Sitting here in Starbucks I'm trying to out how to go through the brain liquefaction process without losing losing my mind. In recent months I've discovered that traveling for me just doesn't work anymore. Well, at least alone. Not only am I having to many issues on the road, it is so hard to get back into a routine when I return. As funny as it seems, the easiest part of traveling for me is the traveling itself. Traveling with someone is okay, but by myself I'm to wide open to issues.
Seems like I'm caught up in trying to find a life and lifestyle that works, while trying to pacify my ever changing partner FTD. I'm as outgoing and friendly as ever. I love intellectual and stimulating conversation. Yet I run into difficulties with the basics in communications with others in society. Had a stupid incident at my neighborhood supermarket I frequent daily and might've gotten myself banned. Over a month ago I ordered a simple chicken parmesan hero. When I got home it turned out to be a lemon chicken hero. I took a bite and then brought it back to the store. It was awful. The kid who made the sandwich realized it was a mistake and authorized a refund. Last night I was back at the supermarket and ordered a meatball parmesan hero from the same sandwich boy of the previous incident. There was a fair sized crowd and when I placed my order, he announced out loud that he would make it for me as long as I wouldn't return it. I said, "excuse me, what did you say to me"? He repeated it with sandwich boy bravado. Bad move. I realized I hadn't shut off the flashing Neon Light sign on my forehead which proclaimed, "Danger, FTD, Don't Mess with at your Own Risk". I told sandwich boy he already admitted a month ago he'd made a mistake with the sandwich and I didn't need to put up with his passive/aggressive BS now. He said he wanted to make sure I wasn't going to return it. There were a lot of people at the counter and this wasn't going to go well for sandwich boy or me. I asked him if I ever returned a sandwich before? He retorted no. I said to him, "I've been coming here for years and have never returned anything. Now I return one sandwich a month ago and bruise your sandwich boy ego and you need to try and humiliate me in front of all these people". He quickly moved to the end of the counter away from the crowd and signaled me to come down there to him. I told him out loud he started this BS in front of a crowd with his uncalled for remark and now that he's looking like an idiot he wants to take it to a quiet corner. I told him he should he should stop cowering and come back and make the damn sandwich. He wouldn't move. Everything was at a standstill with this Mexican standoff. The crowd, other employees, sandwich boy and me were silent and waiting for someone to make a move. Finally after about a minute I left. Not sure if I'm allowed back in Frank's supermarket. I think I need to start making a list of FTD No-Go places.
I need to lose weight, so getting banned might help me.
As much as I'm trying to lead a normal life, it's just not working. Friends invited me to go away for this holiday weekend, but I declined. I was going to but I haven't been doing well lately going away and I don't feel like camping. I'm not a snob, but I don't feel like sleeping in a tent with a dog that continually likes to snap at my ankles. Plus, I just really don't feel like going away. Guess It'll be a McBucks '181' weekend at the local Starbucks. I need to get back on track with filming and my book anyway. I've been unproductive lately and it's really difficult for me to live with myself this way.
Still looking to stabilize my path. All I can do is go one day at a time and what happened yesterday, was lifetimes ago.
Howard
Thursday, August 30, 2012
Monday, August 27, 2012
FTD'ed and Exhausted, so What.
Someone whom I'm in contact with wrote to me last night that she noticed my work week starts on a Monday and ends on a Monday. I've been working 7 days a week. This is what I do. I don't even realize it. Being medically retired means the normal work week doesn't flow from Monday to Friday. It just flows with no beginning or end.
It is by no means your normal schedule. My neurologist has had me taking 10mg of Melatonin to try and help with sleep and it's been working. I'm now up to about 5-6 hours a night. Still, I can't shake the on and off exhaustion during the day. I arrive at Starbucks between 6-7am and return home by 10-11am. Things aren't easy as they used to be. A year ago I used to be running outside, filming "Howard's Brain", and would be working on multiple tasks easily switching back and forth. Now I need to totally focus on one thing at a time and that's even difficult.
My main areas of focus now are my Blog, Book and FTD Patient Support group. I'm trying desperately to stay on top of these and not let them drift. It just seems like I'm having such issues staying focused and just have waves of exhaustion hit me. I'm usually exhausted and it feels like my brain has shut down from late morning till mid/late afternoon. Then I catch a 2nd wind for a few hours.
One theory is that since there's substantial atrophy in part of the brain, the healthy part needs to work aggressively to make up for the damaged part. This mean using 10-20 times the amount of energy and time to get through easy reading and functioning.
Some use medications to help push them and keep them going. I've had to many issues with side effects and really don't like or trust what we call modern medicines. I've been incredibly successful with behavioral techniques in helping manage some of the symptoms of FTD. I prefer not to dull my senses and brain. I've also been very fortunate and lucky as to how FTD has been affecting me. Each case of FTD is different and there's no crystal ball on what will happen to each individual.
Reading and comprehension continues to become more difficult. Seems by the time I get to the 2nd or 3rd paragraph, I lose the beginning. Sometimes I already know the statistic of an upcoming page or paragraph and realize I've read the same newspaper article over and over perhaps a half a dozen times. When it comes to TV, I can only follow the simplest of plots. Any movie that has subplots or complicated topics I lose track of. When I realize I don't know what's going on, I usually shift back and forth to my computer.
Writing is a different story. I can write freely, but it becomes an arduous task to edit or review my own writing.
One routine change I will be making this week will be adding going to the gym a couple of times a week. I'm not sure how this will affect me, but I'll find out. I'm also going to cut my Melatonin intake by half from 10mg to 5mg. Hit or miss, we'll see what happens. I would love an extra hour or two a day of functionablilty.
A friend has volunteered to help me get back back on track filming "Howard's Brain" a couple of hours a week. I need the help. It's become so difficult trying to keep everything going and keep up on my projects.
As far as I'm concerned, I'm doing great and will keep plugging away at life. We all have obstacles in life and just need to keep finding ways to circumvent. I might be getting less done than last year and have less money, but my quality of life continues to improve. What is important to us in our lives? I had to go to hell and back to find out. What I used to think was important and substantial now seems silly. Does this mean I'm being critical or judgmental of anyone else's life. Absolutely not. I just found my own path that works for me. I've accepted what my life is and will continue to make the best of it every moment of every day, every day of each week, every week of each month and each month of every year.
Howard
It is by no means your normal schedule. My neurologist has had me taking 10mg of Melatonin to try and help with sleep and it's been working. I'm now up to about 5-6 hours a night. Still, I can't shake the on and off exhaustion during the day. I arrive at Starbucks between 6-7am and return home by 10-11am. Things aren't easy as they used to be. A year ago I used to be running outside, filming "Howard's Brain", and would be working on multiple tasks easily switching back and forth. Now I need to totally focus on one thing at a time and that's even difficult.
My main areas of focus now are my Blog, Book and FTD Patient Support group. I'm trying desperately to stay on top of these and not let them drift. It just seems like I'm having such issues staying focused and just have waves of exhaustion hit me. I'm usually exhausted and it feels like my brain has shut down from late morning till mid/late afternoon. Then I catch a 2nd wind for a few hours.
One theory is that since there's substantial atrophy in part of the brain, the healthy part needs to work aggressively to make up for the damaged part. This mean using 10-20 times the amount of energy and time to get through easy reading and functioning.
Some use medications to help push them and keep them going. I've had to many issues with side effects and really don't like or trust what we call modern medicines. I've been incredibly successful with behavioral techniques in helping manage some of the symptoms of FTD. I prefer not to dull my senses and brain. I've also been very fortunate and lucky as to how FTD has been affecting me. Each case of FTD is different and there's no crystal ball on what will happen to each individual.
Reading and comprehension continues to become more difficult. Seems by the time I get to the 2nd or 3rd paragraph, I lose the beginning. Sometimes I already know the statistic of an upcoming page or paragraph and realize I've read the same newspaper article over and over perhaps a half a dozen times. When it comes to TV, I can only follow the simplest of plots. Any movie that has subplots or complicated topics I lose track of. When I realize I don't know what's going on, I usually shift back and forth to my computer.
Writing is a different story. I can write freely, but it becomes an arduous task to edit or review my own writing.
One routine change I will be making this week will be adding going to the gym a couple of times a week. I'm not sure how this will affect me, but I'll find out. I'm also going to cut my Melatonin intake by half from 10mg to 5mg. Hit or miss, we'll see what happens. I would love an extra hour or two a day of functionablilty.
A friend has volunteered to help me get back back on track filming "Howard's Brain" a couple of hours a week. I need the help. It's become so difficult trying to keep everything going and keep up on my projects.
As far as I'm concerned, I'm doing great and will keep plugging away at life. We all have obstacles in life and just need to keep finding ways to circumvent. I might be getting less done than last year and have less money, but my quality of life continues to improve. What is important to us in our lives? I had to go to hell and back to find out. What I used to think was important and substantial now seems silly. Does this mean I'm being critical or judgmental of anyone else's life. Absolutely not. I just found my own path that works for me. I've accepted what my life is and will continue to make the best of it every moment of every day, every day of each week, every week of each month and each month of every year.
Howard
Tuesday, August 21, 2012
FTD and Making a Life
I'm still here today and I'll be around tomorrow. Once again I'm trying to thrust myself into non-FTD mode. Yes, lately FTD has been getting the most of me and I've been consumed at managing and living with it instead of living and letting it just be. It's a delicate balance between over thinking and burning out.
It's easy to get caught up in being your own caregiver. Life turns into caregiving and not living life. People ask me how I can do it. Guess what, I have no choice. I do have some help but most of everything falls on my shoulders. I get letters all the time asking what I'm doing for long term care and future plans. I've been looking into it for a few months and considering I'm dead broke. The options are really bad and depressing.
Time to get back to basics. I'm living for today. I was at my neurologist a few weeks ago and besides a bit of a decline in cognitive skills, I'm doing fine. There is no crystal ball when it comes to FTD and I'm not going to get caught up in "end of life" plans, but will instead concentrate on "quality of life" plans.
Yes, I know I have behavioral issues, memory issues and other FTD symptoms. In the last 2 years besides being diagnosed with FTD I've also had to battle cancer and heart disease with a heart attack and 3 stents inserted.
I'm returning to my motto that FTD can hang out, but my life is mine.
FTD, cancer and heart disease can get in the back of my line. I have a life to live and live it I shall.
Hey, I have charitable help with meals, God's Love We Deliver and people helping me survive financially. Is my life is what it used to be? No and it will never return. Have I fully accepted it the way it is now. No, I miss my old life, but it's gone and I need to rock and roll. That means kicking myself in the ass every time I start feeling sorry for myself or start heading towards victim mode.
To many patients and caregivers are victims of their own minds.
We all have the right to live a good and fruitful life with purpose and happiness. Does shit happen and things get real bad and real ugly. Yes, that just means we've got to dig in and work even harder to make a life.
I have a life and will continue to make it better. What about you?
Howard
It's easy to get caught up in being your own caregiver. Life turns into caregiving and not living life. People ask me how I can do it. Guess what, I have no choice. I do have some help but most of everything falls on my shoulders. I get letters all the time asking what I'm doing for long term care and future plans. I've been looking into it for a few months and considering I'm dead broke. The options are really bad and depressing.
Time to get back to basics. I'm living for today. I was at my neurologist a few weeks ago and besides a bit of a decline in cognitive skills, I'm doing fine. There is no crystal ball when it comes to FTD and I'm not going to get caught up in "end of life" plans, but will instead concentrate on "quality of life" plans.
Yes, I know I have behavioral issues, memory issues and other FTD symptoms. In the last 2 years besides being diagnosed with FTD I've also had to battle cancer and heart disease with a heart attack and 3 stents inserted.
I'm returning to my motto that FTD can hang out, but my life is mine.
FTD, cancer and heart disease can get in the back of my line. I have a life to live and live it I shall.
Hey, I have charitable help with meals, God's Love We Deliver and people helping me survive financially. Is my life is what it used to be? No and it will never return. Have I fully accepted it the way it is now. No, I miss my old life, but it's gone and I need to rock and roll. That means kicking myself in the ass every time I start feeling sorry for myself or start heading towards victim mode.
To many patients and caregivers are victims of their own minds.
We all have the right to live a good and fruitful life with purpose and happiness. Does shit happen and things get real bad and real ugly. Yes, that just means we've got to dig in and work even harder to make a life.
I have a life and will continue to make it better. What about you?
Howard
Friday, August 10, 2012
Been a Good Week
Last weekend my girlfriend and I ended our relationship. It's hard to deal with the finality of FTD. I understood. She needed and I wanted for her someone with a "lifetime plan", not an "end of life plan". Of course there were other variables I won't get into.
It was the right choice. We both knew from the beginning it wouldn't be a long term plan. It just happened to be bad timing in the sense of when in our lives we met. Hopefully I'll be catching up with her in a future life. Of course all week I've thought about her beauty, intelligence, sarcastic wit, eyebrow raise and many mannerisms. I kept putting her back into my mind, not an ordinary miss or loss. What I decided last weekend was I was not going to collapse. It's so hard accurately translate to the reader the effects of change of routine, loss or dramatic change can be with someone with FTD/Dementia. That pesky parasite, depression is always hanging around and once it settles in, it's tough to exterminate.
I decided I was going to get through this unscathed. No matter how I slept, no matter how I felt I wasn't going to deviate each day from the routine I recently set up. Guess what, I had a great week. i stuck to my plan and each day was smooth. Did I think of my ex. Yes, all the time she travelled with me in my head. The apathy of FTD was definitely there. There wasn't the heartbrokenness of relationships past. She kept popping into my head during all the usual times day and night. But it was pleasant thoughts of all the things I love about her, not a desperate longing and vacancy in my heart.
I've accomplished much in the last year, but I've slowed way down. I avoid the public much more these days. I'm satisfied with my minimum schedule and where I'm not becoming a hermit or isolating myself. I've become much more comfortable and feel safer being out of harms way and spending much more time alone. I will no longer be pushing myself to be out in social situations or take part of different things. I find myself recently getting quieter on purpose. Yes, I have my moments in grocery stores, Starbucks etc. But on the whole I'm trying to get into a more peaceful existence and want to stay out of the publics eye with my outlandish FTD behavior. Can I control this. Not really, but I find by limiting social exposure and overstimulation I feel a lot better.
I was thinking yesterday about my thought process now and what has changed compared to a year ago. A friend of mine told me nothing has changed in my life besides my thought process. He's so right and I could say it's scary but in actuality it's become a lot less scary.
To be continued.............
It's been a really good week and with my mindset and determination set to put my body in an accommodating place, I look forward to the same next week.
FTD Support Group Selected as one of the Best Blogs of 2012
Howard
Wednesday, August 8, 2012
FTD Support Group Selected as one of the Best Blogs of 2012
I was just notified and shocked that my blog was selected as one of the top 25 blogs. My blog made the top 10 and was ranked number 9. I'm humbled and want to thank Healthline and the 25,000 readers who visited this blog as it crossed it's 1 year anniversary.
(link on bottom for full results)
Here is a link for the full results.
http://www.healthline.com/health-slideshow/best-alzheimers-dementia-blogs
Had to cancel my sons visit from Seattle last night. Just not enough money for airfare and expenses. He is 14 and needs me at this stage in his life. Funny that I have to grasp for feelings and think feelings through to make sure I have and show them. Sometimes there foreign and sometimes closer to home. There's always Christmas. Slept only 1 1/2 hours last night but so what. I made sure I made it here to Starbucks for a few hours in the morning. I somehow keep having to convince myself I have a good life and have to fight to be happy and productive. I'll never give up.
Howard
http://www.healthline.com/health-slideshow/best-alzheimers-dementia-blogs
Had to cancel my sons visit from Seattle last night. Just not enough money for airfare and expenses. He is 14 and needs me at this stage in his life. Funny that I have to grasp for feelings and think feelings through to make sure I have and show them. Sometimes there foreign and sometimes closer to home. There's always Christmas. Slept only 1 1/2 hours last night but so what. I made sure I made it here to Starbucks for a few hours in the morning. I somehow keep having to convince myself I have a good life and have to fight to be happy and productive. I'll never give up.
Howard
Tuesday, August 7, 2012
Monday Morning with revision*
It's Monday and I've been at Starbucks since 6am.
After months of struggling I'm happy to be back into a routine 6-7 days a
week. My day consists of Starbucks 6-10 or 11am then home. Last year it was
6-9am so I guess I'm doing better. When I get home from my few hour stint at
Starbucks I'm exhausted. I'm usually done till the next day. Could I do more in
the evenings and afternoons. I really don't know. When I'm tired and by myself
it seems I have a lot less control over myself. I spend most of my time alone
and that continues to increase. I do feel safer alone. I do not like incidents
with people and I don't like my behavior. I've had incidents with moderators at
one support group I visit regularly. I've received many private messages and
emails about this. To be honest, I don't know if what I've written is right or
wrong. Meaning it might've been offensive to someone. If it was I
apologize to those people and the moderators.
My behavior is normally within reasonable bounds
for who and what I am now. Who I am now is not who I used to be. I don't like
being out of control. My functionalbility has declined and I'm getting worn
down. I'm spending more time by myself and find myself getting easily
irritated.
Sometimes I go with a friend to Costco or a ride
somewhere, but for the most part I really don't do much. The few hours I spend
at Starbucks, I try to get my thoughts on paper. I try to articulate what my
thoughts are like, where they come from and what life is like living this way.
Yes, I am aware that I'm unaware of what I'm doing
and saying much of the time. What this means is I'm not sure what I'm doing is
right of wrong. Usually after the fact, it hits me what I said or did either
that or someone makes me aware of it. This is not a fun life. I am not a
rock star, movie star, celebrity or Siddhartha. I'm just a guy who got sick and
is trying to make the most of life while I can. People say I inspire them. The
truth is I'm in survival mode. I'm realistically scared of being out on the
streets or an institution. People like me don't do well in institutions. We
wind up drugged up or put in a secure mental facility. I will not be going this
route.
A little history. Why did I start this blog? I
started this blog because I didn't know what to do with myself. I only have a
few good hours a day which are usually in the morning and a friend suggested I
start it. It was a way I could describe what it was like living with FTD/Dementia and help others in the process. Writing also helps me understand what I'm going through. When I started this blog I was scared I would be shortly dead.
There's a lot of scary stuff out there on the web. Much fact and fiction. My
neurologist banned me from reading anything on FTD. I was consumed with death.
A friend of mine with FTD wrote to me last week that I was consumed with FTD.
He was right. I eat, breathe, write, film and think FTD. I drive everyone
around me crazy. I've successfully isolated myself so I don't have that
many friends around me any more. Most are new victims to me.
I receive really nice comments from people all the
time. They are deeply appreciated. Last night I received a comment letter that
was incredibly vicious and bitter. It was from a Kathy R and had absolutely no
merit, credibility or anything constructive in it.. It was based on her pain
and anger. I've received letters and comments before questioning if I had FTD
and why I'm functioning so well, but never something as nasty as this. It was
the first time I deleted a letter. Kathy R if you want me to address your letter,
you can send me an email at howardjglick@gmail.com and I'll respond. Otherwise
you can start the "anti-Howard Glick blog" or join the "Kill
Howard Glick club".
* Please note: I was contacted by a
2nd Kathy R from Maryland who is not a caregiver, she's a patient and in
constant contact with me. This is not the Mary R who wrote the comment.
Even though my mind is withering and filled
with scary and confused thoughts a good deal of the time I try and keep my
mindset positive.
This isn't the life I've chosen and I wouldn't
wish it on anyone. But "it is what it is" and I have no choice to go
on. What else is there? Suicide. Tried that and learned two things. One thing
is that I'm not good at it and the other was I had FTD.
Howard
Thursday, August 2, 2012
FTD Routine - back on Track
First of all I'd like to apologize anyone I offended on my last blog on appropriateness. Some of what I wrote at the time I wrote was inappropriate and I've since deleted some of the passages. The blog was answering many questions that caregivers were enquiring about and some of what was written was offensive.
I used to be a very capable person flying 120 flights a year, 200+ nights in hotels, rental cars etc. There was no travel agent. I needed to book everything myself at competitive prices and then organize work at my destination. Today, I can barely make it through a day. Each task takes a ridiculous amount of time and energy.
For the last year I've been going to Starbucks '181' daily. It was my base of operations and I recently learned how fragile my life has become. It was months ago that Starbucks renovated and I've been struggling ever since. Starbucks '181' turned into a crowded, noisy place. The speakers were blaring and people were shouting to be heard over the speakers.
Of course in the middle of this mess I went to Seattle which made everything twice as difficult. Not only was that trip difficult, but I've been like a hobo since I've returned. Each week I've been trying new Starbucks and different venues. Starbucks decided to turn up the music volume in all there stores. That, on top of me being very sensitive to sound has made things difficult and frustrating. "God's love we deliver" charity food service has been a godsend, except it's taken a while to fit that into a routine.. They deliver Monday, Wednesday and Friday between 8:30 and 4pm. Memory Club, my support group was on Tuesday. So my schedule looks as follows:
Monday: GLWD
Tuesday: Memory Club
Wednesday: GLWD
Thursday: Blogging somewhere - Starbucks downtown
Friday: GLWD
Saturday: Domestification day
Sunday: Blogging Somewhere - Starbucks downtown
I only have a few hours in the morning where I can really focus. I went from going to Starbucks 6-7 days a week, to not at all. I used to go to Starbucks before Memory Club and now that was out. The worker at Starbucks 181 told me arrogantly that they were going to keep the volume high even though they knew customers were complaining. He told me the "needs of the whole, outweigh the needs of the few" and many liked the volume high. He must've thought we were in a Star Trek episode and not a coffee shop.
It reached the point that I didn't know where I was going or what I'd accomplish each day. I decided that I needed to get my routine in order. I was spending many a day not even leaving the house. My filming dropped to minimum levels and I was turning into a House Potato. Change of routine is incredibly difficult with FTD or any type of dementia. The longer this chaos went on, the more difficult it was to change.
I needed to make some tough choices and implement difficult decisions to get back on track.
God's Love We Deliver was a godsend, only problem was I had to be home 3 days a week from 8:30am-4pm awaiting there delivery. The first 2 out of 5 times they didn't show up at all, nor did they call. There food is restaurant quality and helped me get past my day to struggles figuring out what to eat and also was saving me money. It was killing me to stay home all day, 3 days a week. I called and cut it down to 2 deliveries a week and them finally we worked it out where they would deliver 5 days of food once a week.
Next, my beloved Memory Club support group. Memory Club gave me the tools to learn to live with Dementia. I've been going there 11/2 years and had many friends. Not only did I get a lot out of it, I felt I contributed much to it. The facilitator, Carmen Nunez was the best group leader I've ever seen. Things change though. Where it used to average 8-13 people showing up, it now dwindled to 2-3. I kept going to support the group, but was no longer getting out of it what I used to. I decided to take off the summer, get my routine back in order and evaluate later.
As luck would have it, my blog and the Forbes article on Starbucks actually got the attention of the District Manager of Starbucks as well as his boss. I spoke with both at length. I also explained how sad it was that many in the community no longer went there because it was no longer customer friendly. There were plenty of complaints besides the articles and the Starbucks corporation did take actions to partially return McBucks '181' to Starbucks status. The new speaker that was blasting was removed and put in the back of the store so customers no longer had to shout to be heard over the speaker. The long hard bench they installed had a comfortable custom made cushion put over it. The tiny tables still sucked but I could live with that. I also picked up a pair of noise reduction headphones before they moved the speaker and this now adds extra comfort.
My McBucks '181' had returned to full Starbucks status. Many of the old regulars still will not come back, but I'm glad I don't need to take the subway downtown anymore. The store is still at least half empty a good deal of the time. In fact, I just came from the counter getting my free refill and thanked the manager and staff for screwing up the store because it's so quiet being half empty a good deal of the time. They snickered and sort of laughed.
Have been coming back here every morning for about a week now and I'm feeling so much better. No more getting up in the morning not sure what I was doing.
My new schedule:
Monday: McBucks '181' - Book writing - Filming
Tuesday: McBucks '181' - Blog- Filming
Wednesday: McBucks '181' - Book writing 9:45am GLWD
Thursday: McBucks '181' - Blog - Filming
Friday: McBucks '181' - Book writing - Filming
Saturday: Domestification McBucks '181' - Netflix
Sunday: McBucks '181' - Book writing - Filming
I'm also working on an early evening schedule. Ideally, I'd like to have a couple hours of being productive in the evening. Twice this week I went out, backpack on and wandered for about 45 minutes before going home undecided. I'd also like to get in a couple of workouts at the gym each week. Hey, Rome wasn't built in a day, but I'm confident I'm heading in the right direction.
Howard
I used to be a very capable person flying 120 flights a year, 200+ nights in hotels, rental cars etc. There was no travel agent. I needed to book everything myself at competitive prices and then organize work at my destination. Today, I can barely make it through a day. Each task takes a ridiculous amount of time and energy.
For the last year I've been going to Starbucks '181' daily. It was my base of operations and I recently learned how fragile my life has become. It was months ago that Starbucks renovated and I've been struggling ever since. Starbucks '181' turned into a crowded, noisy place. The speakers were blaring and people were shouting to be heard over the speakers.
Of course in the middle of this mess I went to Seattle which made everything twice as difficult. Not only was that trip difficult, but I've been like a hobo since I've returned. Each week I've been trying new Starbucks and different venues. Starbucks decided to turn up the music volume in all there stores. That, on top of me being very sensitive to sound has made things difficult and frustrating. "God's love we deliver" charity food service has been a godsend, except it's taken a while to fit that into a routine.. They deliver Monday, Wednesday and Friday between 8:30 and 4pm. Memory Club, my support group was on Tuesday. So my schedule looks as follows:
Monday: GLWD
Tuesday: Memory Club
Wednesday: GLWD
Thursday: Blogging somewhere - Starbucks downtown
Friday: GLWD
Saturday: Domestification day
Sunday: Blogging Somewhere - Starbucks downtown
I only have a few hours in the morning where I can really focus. I went from going to Starbucks 6-7 days a week, to not at all. I used to go to Starbucks before Memory Club and now that was out. The worker at Starbucks 181 told me arrogantly that they were going to keep the volume high even though they knew customers were complaining. He told me the "needs of the whole, outweigh the needs of the few" and many liked the volume high. He must've thought we were in a Star Trek episode and not a coffee shop.
It reached the point that I didn't know where I was going or what I'd accomplish each day. I decided that I needed to get my routine in order. I was spending many a day not even leaving the house. My filming dropped to minimum levels and I was turning into a House Potato. Change of routine is incredibly difficult with FTD or any type of dementia. The longer this chaos went on, the more difficult it was to change.
I needed to make some tough choices and implement difficult decisions to get back on track.
God's Love We Deliver was a godsend, only problem was I had to be home 3 days a week from 8:30am-4pm awaiting there delivery. The first 2 out of 5 times they didn't show up at all, nor did they call. There food is restaurant quality and helped me get past my day to struggles figuring out what to eat and also was saving me money. It was killing me to stay home all day, 3 days a week. I called and cut it down to 2 deliveries a week and them finally we worked it out where they would deliver 5 days of food once a week.
Next, my beloved Memory Club support group. Memory Club gave me the tools to learn to live with Dementia. I've been going there 11/2 years and had many friends. Not only did I get a lot out of it, I felt I contributed much to it. The facilitator, Carmen Nunez was the best group leader I've ever seen. Things change though. Where it used to average 8-13 people showing up, it now dwindled to 2-3. I kept going to support the group, but was no longer getting out of it what I used to. I decided to take off the summer, get my routine back in order and evaluate later.
As luck would have it, my blog and the Forbes article on Starbucks actually got the attention of the District Manager of Starbucks as well as his boss. I spoke with both at length. I also explained how sad it was that many in the community no longer went there because it was no longer customer friendly. There were plenty of complaints besides the articles and the Starbucks corporation did take actions to partially return McBucks '181' to Starbucks status. The new speaker that was blasting was removed and put in the back of the store so customers no longer had to shout to be heard over the speaker. The long hard bench they installed had a comfortable custom made cushion put over it. The tiny tables still sucked but I could live with that. I also picked up a pair of noise reduction headphones before they moved the speaker and this now adds extra comfort.
My McBucks '181' had returned to full Starbucks status. Many of the old regulars still will not come back, but I'm glad I don't need to take the subway downtown anymore. The store is still at least half empty a good deal of the time. In fact, I just came from the counter getting my free refill and thanked the manager and staff for screwing up the store because it's so quiet being half empty a good deal of the time. They snickered and sort of laughed.
Have been coming back here every morning for about a week now and I'm feeling so much better. No more getting up in the morning not sure what I was doing.
My new schedule:
Monday: McBucks '181' - Book writing - Filming
Tuesday: McBucks '181' - Blog- Filming
Wednesday: McBucks '181' - Book writing 9:45am GLWD
Thursday: McBucks '181' - Blog - Filming
Friday: McBucks '181' - Book writing - Filming
Saturday: Domestification McBucks '181' - Netflix
Sunday: McBucks '181' - Book writing - Filming
I'm also working on an early evening schedule. Ideally, I'd like to have a couple hours of being productive in the evening. Twice this week I went out, backpack on and wandered for about 45 minutes before going home undecided. I'd also like to get in a couple of workouts at the gym each week. Hey, Rome wasn't built in a day, but I'm confident I'm heading in the right direction.
Howard
Tuesday, July 31, 2012
Inappropriate Behavior. Who cares? I don't or do I?
Was cruising the aisles at Trader Joe's yesterday and happened upon a refreshing clerk stocking the shelf. Of course I gave her a big "hi" and she responded with a brilliant smile. I told her how I haven't seen her in a year or so and how great she looked. She lost weight, looked fit and had an overall aura of happiness. She thanked me and reciprocated with a compliment. I asked how life was treating her etc. We talked for about a minute and caught up on each others lives while laughing quite a bit. I was not making a pass at her, just saying what came into my head. My friend Howard was right next to me. He was embarrassed at my FTDish behavior. and ushered me on. Of course Howard knew that this was the first time I've ever laid eyes on the Trader Joe's worker. Howard always tells me I need to control myself and I always tell him, "it's not me, it's FTD".
Half hour later in the upper scale, upper east side we watched an upper class. well groomed gentleman threw a plastic bag on the sidewalk. I shouted out the car window, "pig". Howard and I had the discussion of me not saying something to everyone about everything. We should've been discussing can I control it and is it even important to me. So, am I aware and can I shut up. Yes, I am aware that I say whatever is on my mind in any given moment. I don't shut up and am aware that it's Howard Glick FTD. I'm aware that I'm unaware of what I'm exactly saying as I'm saying it, but I'm aware my mouth is ramped up and I'm talking when I should be silent. I know I shouldn't be saying something, but I don't care.
I try to measure the amount of energy I put on controlling what I'm saying. If I monitor myself all the time, I put myself in a perpetual state of exhaustion. Meds just put you in a cloud and once you start on that your mind will slip faster and your quality of life will slip. Some do need the relief of meds or need to be controlled by meds. For me, my path is taking FTD head on with my relief coming from mindset.
There are many stages of FTD and each person and caregiver has different ways of dealing with it. I went through the cursing stage for years. Now it has mellowed. I've worked very hard on minimizing the amount of cursing and I've had help. About a year ago I cursed in front of my ex-girlfriends child and her response to me was quick and furious. I remember it like it was yesterday. Since then I have worked hard at knowing when I'm cursing, especially around children. Did it curtail overnight. No, it's taken a while, but It's nominal compared to what it was. I took my girlfriends "quick retort" everywhere with me and she is always in my FTD mind reminding me to keep it together.
Sexual inappropriateness is another fun FTD stage which is rough and wearing on caregivers. I've been going through it for a couple of years now, but it's subsided compared to what it used to be. Funny, I'm sitting here at Starbucks checking every woman out. That probably puts me in the same arena with 99% of the dysfunctional male population. What makes an FTD'er different is we just don't glance. We make remarks and some people actually touch people. Hypersexuality is common. It's crazy that progressive neurological disease can give a 54 year old a libido of a 15 year old. I was once laying down with my girlfriend and she was discussing something particularly painful in her life. At one point she stopped and said, "Are you hitting on me". I didn't even realize I started fondling her and wasn't even paying attention to what she was saying. I told her I was making a pass at her and didn't even realize it. She was hurt, but lucky for me she gets FTD.
It was common for me to tell a woman on the street what great tits she had or make a pass at anyone I spoke to for more than a minute. My friends used to say something harsh and I would stop, but not really care. At night, everything I did and say would catch up with me and I's lay in bed crying. I found when I was with someone who knew me my behavior was better than when I was alone. The same holds true with all behavioral aspects of FTD. When I'm alone I easily get out of control without realizing it and when with someone I know I'm more aware and in control. Especially if the person I'm with makes me aware with a harsh tone. Sort of sinks in for a while. So, what does it mean that the sexual inappropriate stage has somewhat subsided. It means I'm not totally out of control as I used to be. I'm still unaware when I'm saying things, but I'm saying sexual remarks every day in the way of compliments of jokes. (Still at Starbucks and my doctor just walked in and said hello. She is very attractive, wearing shorts but I don't look at her in a sexual way or think about her in a sexual way. I don't, never have and in control. I never check with children or nuns of touch anyone. We are broken, but many of us stay on the edge of keeping it together). We're not different than anyone else on this planet. People with FTD are sick, but each person and case is different. Where I can make it without meds, plenty need them to stay in control or feel better about there life. Quite often caregivers need to give there loved ones strong drugs like seroquel etc. There is only only so much a caregiver can take and when there safety, sanity or there FTD loved ones safety is an issue, then you have to do what you have to due. The problem is how much do you dull the brain and will that make the person with FTD fade even faster and lose his or her sense of self.
I still make comments how great someone's butt. breasts, arms or calves are. The difference is it's never as ugly as it's used to. Maybe it's how I'm saying it now. It can be that I'm also sitting here deluding myself, making a bad situation tolerable. It's also where you live that makes a big difference. I live in NYC where I can say just about anything without anyone blinking an eye. If I were Iowa or Southern England, I'd probably be institutionalized or drugged up. I've also never touched anyone, nor will I ever touch anyone. I will also never get violent.
Writing to me is the same thing as blabbering with my mouth. I write freely without a filter and I don't care. I've been thrown out of Forums and groups. Some ask me to try and filter myself or they will filter me. If FTD groups can't deal with FTD members than they shouldn't say the group welcomes FTD patients. Yes, I'm sensitive to the fact that caregivers go through hell taking care of FTDers. But you can't tell someone with FTD they have to be normal. There is no on/off switch. Yes, I use strange FTD humor as levity and I might be a bit insensitive because I write, don't think. When someone says they are going to freely modify my posts or responses like they do there husbands, I want to tell them to F(ftd)Off. Sorry, my words are my words and I work to hard evaluating my feelings and actions to let someone flippantly change them. I read plenty of posts about extreme violence and medicine/chemical abuse. They are extremely disturbing and graphic. People with FTD do not need to read and get disturbed by these. I remember being sent into a tizzy thinking I was going to get violent because I had FTD. I was reading caregiver strings which like FTD'er strings need to be carefully evaluated. I did my research through AFTD and other qualified research centers and found there is absolutely no evidence that someone with FTD will turn violent. FTD patients and caregivers need to be tolerant and give each other leeway. Sometimes it is better that the paths of support for patients and caregivers stay separate. I will continue to try and bridge that gap, but now have people from certain groups write me directly in situations that need in depth answers. This way I maximize my time and don't need to worry about offending someone or more often someone worrying about me possibly offending someone.
My former partner and caregiver used to say she used to have to take care of me almost like I was a child. I was on up to 17 pills a day being misdiagnosed as bipolar and didn't even have a chance of controlling myself. It's my belief is that the inner strength we have as people helps us control things to a point. Each person is different with FTD and how they weather adverse conditions. Much of it is flat out desire, mindset and determination to make the most of life and not give up. My reality is I lost my family, career, friends, money and comforts of life. I can never work again as my life slowly slips away. 2 years ago I was told I had FTD and I needed to make my "end of life" plans.
Well it ain't over yet and I've rebuilt. Giving up isn't in my vocabulary. In the last year I've started and maintained a successful blog which is about to pass 25,000 visits whatever that means, filmed 130+ hours in Howard's Brain, a documentary film on me living life with FTD which will be put together by the brilliant filmmaker Joe Becker and started the first FTD Patient Support Group which has 48 members. I also have a girlfriend I love very much who puts up with me and my FTD ways. 8 years ago I was making $100k+ and had a wonderful normal life. Now I have a very self gratifying life and know in my heart I've made a difference in many lives. There can be no greater calling.
Is my life now fun and peachy. I don't know. In the last month I've lost my Food Stamps, Medicaid and my case against Unum is on life support. My health is slowly declining and I'm living off the charity of others. Of course I worry what if the help goes away and I can no longer afford to exist. Checkmate. Yes, I say checkmate in justifiable panic, but guess what? I'll find a way and keep going till there's nothing left and they peel me out of my Manhattan apt.
Thank you all that support me and help give me the determination to get up every morning and try and make a difference.
Howard
Half hour later in the upper scale, upper east side we watched an upper class. well groomed gentleman threw a plastic bag on the sidewalk. I shouted out the car window, "pig". Howard and I had the discussion of me not saying something to everyone about everything. We should've been discussing can I control it and is it even important to me. So, am I aware and can I shut up. Yes, I am aware that I say whatever is on my mind in any given moment. I don't shut up and am aware that it's Howard Glick FTD. I'm aware that I'm unaware of what I'm exactly saying as I'm saying it, but I'm aware my mouth is ramped up and I'm talking when I should be silent. I know I shouldn't be saying something, but I don't care.
I try to measure the amount of energy I put on controlling what I'm saying. If I monitor myself all the time, I put myself in a perpetual state of exhaustion. Meds just put you in a cloud and once you start on that your mind will slip faster and your quality of life will slip. Some do need the relief of meds or need to be controlled by meds. For me, my path is taking FTD head on with my relief coming from mindset.
There are many stages of FTD and each person and caregiver has different ways of dealing with it. I went through the cursing stage for years. Now it has mellowed. I've worked very hard on minimizing the amount of cursing and I've had help. About a year ago I cursed in front of my ex-girlfriends child and her response to me was quick and furious. I remember it like it was yesterday. Since then I have worked hard at knowing when I'm cursing, especially around children. Did it curtail overnight. No, it's taken a while, but It's nominal compared to what it was. I took my girlfriends "quick retort" everywhere with me and she is always in my FTD mind reminding me to keep it together.
Sexual inappropriateness is another fun FTD stage which is rough and wearing on caregivers. I've been going through it for a couple of years now, but it's subsided compared to what it used to be. Funny, I'm sitting here at Starbucks checking every woman out. That probably puts me in the same arena with 99% of the dysfunctional male population. What makes an FTD'er different is we just don't glance. We make remarks and some people actually touch people. Hypersexuality is common. It's crazy that progressive neurological disease can give a 54 year old a libido of a 15 year old. I was once laying down with my girlfriend and she was discussing something particularly painful in her life. At one point she stopped and said, "Are you hitting on me". I didn't even realize I started fondling her and wasn't even paying attention to what she was saying. I told her I was making a pass at her and didn't even realize it. She was hurt, but lucky for me she gets FTD.
It was common for me to tell a woman on the street what great tits she had or make a pass at anyone I spoke to for more than a minute. My friends used to say something harsh and I would stop, but not really care. At night, everything I did and say would catch up with me and I's lay in bed crying. I found when I was with someone who knew me my behavior was better than when I was alone. The same holds true with all behavioral aspects of FTD. When I'm alone I easily get out of control without realizing it and when with someone I know I'm more aware and in control. Especially if the person I'm with makes me aware with a harsh tone. Sort of sinks in for a while. So, what does it mean that the sexual inappropriate stage has somewhat subsided. It means I'm not totally out of control as I used to be. I'm still unaware when I'm saying things, but I'm saying sexual remarks every day in the way of compliments of jokes. (Still at Starbucks and my doctor just walked in and said hello. She is very attractive, wearing shorts but I don't look at her in a sexual way or think about her in a sexual way. I don't, never have and in control. I never check with children or nuns of touch anyone. We are broken, but many of us stay on the edge of keeping it together). We're not different than anyone else on this planet. People with FTD are sick, but each person and case is different. Where I can make it without meds, plenty need them to stay in control or feel better about there life. Quite often caregivers need to give there loved ones strong drugs like seroquel etc. There is only only so much a caregiver can take and when there safety, sanity or there FTD loved ones safety is an issue, then you have to do what you have to due. The problem is how much do you dull the brain and will that make the person with FTD fade even faster and lose his or her sense of self.
I still make comments how great someone's butt. breasts, arms or calves are. The difference is it's never as ugly as it's used to. Maybe it's how I'm saying it now. It can be that I'm also sitting here deluding myself, making a bad situation tolerable. It's also where you live that makes a big difference. I live in NYC where I can say just about anything without anyone blinking an eye. If I were Iowa or Southern England, I'd probably be institutionalized or drugged up. I've also never touched anyone, nor will I ever touch anyone. I will also never get violent.
Writing to me is the same thing as blabbering with my mouth. I write freely without a filter and I don't care. I've been thrown out of Forums and groups. Some ask me to try and filter myself or they will filter me. If FTD groups can't deal with FTD members than they shouldn't say the group welcomes FTD patients. Yes, I'm sensitive to the fact that caregivers go through hell taking care of FTDers. But you can't tell someone with FTD they have to be normal. There is no on/off switch. Yes, I use strange FTD humor as levity and I might be a bit insensitive because I write, don't think. When someone says they are going to freely modify my posts or responses like they do there husbands, I want to tell them to F(ftd)Off. Sorry, my words are my words and I work to hard evaluating my feelings and actions to let someone flippantly change them. I read plenty of posts about extreme violence and medicine/chemical abuse. They are extremely disturbing and graphic. People with FTD do not need to read and get disturbed by these. I remember being sent into a tizzy thinking I was going to get violent because I had FTD. I was reading caregiver strings which like FTD'er strings need to be carefully evaluated. I did my research through AFTD and other qualified research centers and found there is absolutely no evidence that someone with FTD will turn violent. FTD patients and caregivers need to be tolerant and give each other leeway. Sometimes it is better that the paths of support for patients and caregivers stay separate. I will continue to try and bridge that gap, but now have people from certain groups write me directly in situations that need in depth answers. This way I maximize my time and don't need to worry about offending someone or more often someone worrying about me possibly offending someone.
My former partner and caregiver used to say she used to have to take care of me almost like I was a child. I was on up to 17 pills a day being misdiagnosed as bipolar and didn't even have a chance of controlling myself. It's my belief is that the inner strength we have as people helps us control things to a point. Each person is different with FTD and how they weather adverse conditions. Much of it is flat out desire, mindset and determination to make the most of life and not give up. My reality is I lost my family, career, friends, money and comforts of life. I can never work again as my life slowly slips away. 2 years ago I was told I had FTD and I needed to make my "end of life" plans.
Well it ain't over yet and I've rebuilt. Giving up isn't in my vocabulary. In the last year I've started and maintained a successful blog which is about to pass 25,000 visits whatever that means, filmed 130+ hours in Howard's Brain, a documentary film on me living life with FTD which will be put together by the brilliant filmmaker Joe Becker and started the first FTD Patient Support Group which has 48 members. I also have a girlfriend I love very much who puts up with me and my FTD ways. 8 years ago I was making $100k+ and had a wonderful normal life. Now I have a very self gratifying life and know in my heart I've made a difference in many lives. There can be no greater calling.
Is my life now fun and peachy. I don't know. In the last month I've lost my Food Stamps, Medicaid and my case against Unum is on life support. My health is slowly declining and I'm living off the charity of others. Of course I worry what if the help goes away and I can no longer afford to exist. Checkmate. Yes, I say checkmate in justifiable panic, but guess what? I'll find a way and keep going till there's nothing left and they peel me out of my Manhattan apt.
Thank you all that support me and help give me the determination to get up every morning and try and make a difference.
Howard
Friday, July 27, 2012
Get Out The F Door
It's 6:10am and I'm safely seated at McBucks 181 with my ice coffee in hand. It's sort of nice being the only one here besides the workers. It's Howard's time. This is the highest level functioning hours of the day. Getting to this point and into my seat is no easy feat.
I've been up since 1:30am having slept about two and a half hours. The melatonin just isn't working. Had cheerios at 5am and then watched Romney make an ass of himself insulting the British.
Then it hit's. I'm exhausted. Okay, do I stay home and rest and maybe try to catch a couple of Zzzz's or do I get my ass in gear and "get out the Fucking door" (GOTFD). Every FTD molecule in me has me laying there not moving and trying to shut down and not think. There's this FTD haze that we go into where we can just do nothing and not think about. This can go on and on until we let FTD's number one enemy enter the picture. That would be that pesky parasite called depression. Depression can take over your body and soul. For me it's not a matter of fighting off depression, as it is letting it in. It is banned.
GOTFD I shout to myself and I'm out of there leaving that pesky parasite in the dust.
Next, get something done. I need a sense of accomplishment each day. I have that burning desire in me to get something done. Blog, film, post, mail etc. It doesn't matter what. I cannot go home without getting something done and feeling great about myself. No, not good about myself, great about myself. Life is tough with FTD and doing okay doesn't work for me. I need to excel and excel I will. There is no choice, there is no failure. Mindset is everything. Every day I will battle pesky parasites, unawareness, inappropriate behavior and memory loss. That's just internal, never mind the world. Every day I will win.
Most days I get home exhausted between 11am and 1pm. I get home and there's no guarantee I'll get out of the house till the next day. One thing is for sure. Another day has gone by and I'm woking my ass off to stay highly functional with FTD. I will never get complacent and let that pesky parasite depression in.
It's now 7:21 and I have this blog done. I've kicked ass and told FTD to F(ftd)off. Hope this helps someone out there.
Howard
I've been up since 1:30am having slept about two and a half hours. The melatonin just isn't working. Had cheerios at 5am and then watched Romney make an ass of himself insulting the British.
Then it hit's. I'm exhausted. Okay, do I stay home and rest and maybe try to catch a couple of Zzzz's or do I get my ass in gear and "get out the Fucking door" (GOTFD). Every FTD molecule in me has me laying there not moving and trying to shut down and not think. There's this FTD haze that we go into where we can just do nothing and not think about. This can go on and on until we let FTD's number one enemy enter the picture. That would be that pesky parasite called depression. Depression can take over your body and soul. For me it's not a matter of fighting off depression, as it is letting it in. It is banned.
GOTFD I shout to myself and I'm out of there leaving that pesky parasite in the dust.
Next, get something done. I need a sense of accomplishment each day. I have that burning desire in me to get something done. Blog, film, post, mail etc. It doesn't matter what. I cannot go home without getting something done and feeling great about myself. No, not good about myself, great about myself. Life is tough with FTD and doing okay doesn't work for me. I need to excel and excel I will. There is no choice, there is no failure. Mindset is everything. Every day I will battle pesky parasites, unawareness, inappropriate behavior and memory loss. That's just internal, never mind the world. Every day I will win.
Most days I get home exhausted between 11am and 1pm. I get home and there's no guarantee I'll get out of the house till the next day. One thing is for sure. Another day has gone by and I'm woking my ass off to stay highly functional with FTD. I will never get complacent and let that pesky parasite depression in.
It's now 7:21 and I have this blog done. I've kicked ass and told FTD to F(ftd)off. Hope this helps someone out there.
Howard
Wednesday, July 25, 2012
FTD and Cooking Fires
Last week I awoke mid-day to the smell of burning paper. No smoke, just a faint smell. Something was amiss. I went to the kitchen to find my window fan on high and my friend Barbara, who was there earlier gone. I texted her asking if there was a fire. She replied that I had the God's Love We Deliver" meal in the oven and had the wrong setting on and the cardboard top burned. I wrote back "Oops".
Barbara of course was worried I would start a fire. I wrote back my fire prevention strategy. I told her that when I cook the oven timer is on and the oven goes off after a while. I also have a timer on my cell phone I use all the time. The problem isn't forgetting things as much as getting distracted. I get distracted so easily. If a timer goes off and I'm typing or doing something, poof-it's gone.
Like everyone with FTD/dementia, I try to develop a fail-safe end game strategy that works. I have a smoke detector which is not attached to the wall which is movable. When I'm cooking I place it on the kitchen table in my small kitchen. I then close the door tight so if my food accidentally starts to burn the small room quickly fills with oven smoke. In case all my strategies fail and my food starts to burn, my smoke alarm turns into an ear piercing get your ass in gear timer.
When I cook a steak or hamburger, the smoke detector is my timer.
The screaming piercing wailing of the smoke detector timer has me in the smoke filled kitchen in an instant. I quickly shut the oven off and remove the screaming smoke detector from the kitchen and place it in the living room where it goes off fairly quickly. I'm then back in the kitchen opening the windows and turning on the venting fan. I keep the door closed so the smoke stays contained to the kitchen. I then check my precious meal which is always still edible.
Food prepared and life goes on.
To me, this is business as usual. FTD in action. To Barbara, she was hysterical laughing/horrified that I was using my smoke detector as a food timer.
I explained to her it was all contained and just smokey, never a flame fire. She looked at me cross-eyed and told me we're going to Home Depot for a fire extinguisher just in case.
I should start selling FTD certified smoke detectors.
Life as an FTD'er.
Howard
Barbara of course was worried I would start a fire. I wrote back my fire prevention strategy. I told her that when I cook the oven timer is on and the oven goes off after a while. I also have a timer on my cell phone I use all the time. The problem isn't forgetting things as much as getting distracted. I get distracted so easily. If a timer goes off and I'm typing or doing something, poof-it's gone.
Like everyone with FTD/dementia, I try to develop a fail-safe end game strategy that works. I have a smoke detector which is not attached to the wall which is movable. When I'm cooking I place it on the kitchen table in my small kitchen. I then close the door tight so if my food accidentally starts to burn the small room quickly fills with oven smoke. In case all my strategies fail and my food starts to burn, my smoke alarm turns into an ear piercing get your ass in gear timer.
When I cook a steak or hamburger, the smoke detector is my timer.
The screaming piercing wailing of the smoke detector timer has me in the smoke filled kitchen in an instant. I quickly shut the oven off and remove the screaming smoke detector from the kitchen and place it in the living room where it goes off fairly quickly. I'm then back in the kitchen opening the windows and turning on the venting fan. I keep the door closed so the smoke stays contained to the kitchen. I then check my precious meal which is always still edible.
Food prepared and life goes on.
To me, this is business as usual. FTD in action. To Barbara, she was hysterical laughing/horrified that I was using my smoke detector as a food timer.
I explained to her it was all contained and just smokey, never a flame fire. She looked at me cross-eyed and told me we're going to Home Depot for a fire extinguisher just in case.
I should start selling FTD certified smoke detectors.
Life as an FTD'er.
Howard
Monday, July 2, 2012
Intellectual Love
Love is different with FTD.
I
can actually say I love with all my brain.
That’s some statement coming from someone losing his mind to a degenerative
disease.
Spent 6 days in Seattle. It was my daughters HS Graduation and I wasn’t
going to miss it, even if it meant hitchhiking cross-country. I missed my son’s
Bar Mitzvah synagogue service (no money for a party) last year, which I dearly
regret.
It was wonderful to see my children and my lifelong friend Marc. It was a tough trip. I won’t pretend differently. I’ve been back over a week and I’m still not back into the groove of life with FTD. Being there also made me realize how much I love and cherish my children and my void of rarely being able to see them living on the other coast in perilous financial state with FTD.
The old feeling of love is gone with FTD. In fact, I don’t even remember it, but can sort of imagine it by seeing it in others. The emotion and feeling isn’t there, but it’s replaced by what I can call intellectual love. Really seeing who and what my children are and what remarkable people they’ve become.
Chelsea is 18 and
has become a young woman. She exuberates incredible confidence in herself and
incredible determination to map out her college experience as well as her
future. She has also become fiscally responsible working after school each day
and saving some money. Chelsea showed her maturity and responsibility by
picking a state school (Washington State) to go to over her preferred more
expensive school. I see exactly whom she is and I’m not clouded by emotion. In
fact, a lot of emotion around me makes me uncomfortable.
I love both my children more than ever, but have to put on disguise to show it. I could easily be emotionless and have been confronted by people hurt for my lack of showing I care. I care, I just need to force myself to show the emotion of caring. I’m very adept now at finding the inner beauty of people and not just seeing a shell. I see a person and notice all the things that make them who they are. I force myself to be aware their actions. Love for children, their humanity, work ethic and selfless acts for others. I can develop an incredible respect and love for people.
On the other side I have zero tolerance for people who aren’t
straight with me or cross me. Certain people who I once cared for dearly I can
drop in heartbeat without a second thought and then never think of them again.
I have trouble following facial expressions and people’s mannerisms
(sarcasm), yet I know when someone is being authentic or unauthentic.
Guess you know whom I’m not backing in the Presidential race.
If someone is questionable, they’re toast in my FTD world. This isn’t the
Howard Glick of the past. I’m rigid and intolerant. Someone told me they like
how straight up I am and feel I’m more evolved seeing things with less or no
emotion. Trust me, there’s no fun in being like a Vulcan on planet earth. You wouldn’t want to trade places with me and
the revolving door of strange FTD symptoms.
“Gods Love We Deliver” just brought my food delivery. That means I’m no
longer captive in my apartment. I wish it was that simple. I literally have to
force-feed myself motivation these days. Since the McBucks debacle, I still
haven’t recovered and gotten back into a routine. I’ll save that for the next blog. Hey, at
least I’m writing and being productive.
Chelsea's graduation was an experience. There were 4,000 people there and
much noise and excitement. I didn't feel it even though I pretended. It was
overwhelming and there was nothing I could do to shut them all up. My ex-wife
kept clapping loudly next to me and I wanted to deck her. I struggled sitting
there trying to be happy while my skin was crawling. Thank the Universe my son
was next to me which kept me focused on the important things in life and distracted
from these unwanted thousands that showed up at my daughters graduation. I was incredibly
proud of her and her accomplishments. Chelsea was beaming and I couldn’t take
my eyes off of her living her moment. The most surprising moment for me of the evening
was seeing my ex-in laws for the first in 10+ years. Like most ex-in-laws we
didn’t leave on the best of terms. The love they showed for their Granddaughter
and the elation they had at the graduation had me awestruck. My hardcore insane
in-laws were so in your face “real” that I kept glancing over at them in awe appreciating
who they are. My son was sitting next to me with golden heart, so I was in
heaven. To bad I couldn’t have gotten rid of the other 3,900+ people.
The highlight of my trip was going to meet Chelsea for dinner on the last
night of the trip. We never did have dinner. Chelsea had a flat tire. We sat by
the road for about 2 hours waiting for help and to be fixed. Those 2 hours were
the best 2 hours of my entire trip. We sat and just talked. Father and
Daughter. Chelsea and Howard.
There was much more to the trip………………
Complete Forbes FTD Patient Interview Series
This is the complete Forbes patient interview series. This series of interviews was done by seasoned journalist Alice Walton. Alice attended the AFTD conference in Atlanta, has spoken to some of the nations most prominent FTD specializing neurologists and met 4 of the 5 FTD patients she interviewed. Alice has a Phd in English, Biopsychology and Neuroscience after studying at Vassar and CUNY. This was the first series of FTD patient interviews ever published.
Complete Forbes FTD Patient Interview Series
This is the complete Forbes patient interview series. This series of interviews was done by seasoned journalist Alice Walton. Alice attended the AFTD conference in Atlanta, has spoken to some of the nations most prominent FTD specializing neurologists and met 4 of the 5 FTD patients she interviewed. Alice has a Phd in English, Biopsychology and Neuroscience after studying at Vassar and CUNY. This was the first series of FTD patient interviews ever published.
Diana – The Disease That Stole My Career: Inside The Mind Of Frontotemporal Degeneration
Howard
Monday, June 11, 2012
I'm Aware I Need Awareness Cards
(Forbes FTD series patient profile at the end of article)
Brandt Henderson
Was with my friend Steve at Costco yesterday and he asked me to give him
some of those FTD awareness cards. This was a bit of a shock, but not surprising.
FTD awareness cards or “Get out of Trouble Free” cards are available for both
patients and people who are in the company of FTD’ers. I’ve always prided
myself on carrying the cards and not using them.
FTD AWARENESS CARDS
by AFTD
by AFTD
She was upset, so first the first time ever I reached in my wallet and
pulled out one of my FTD “get out of trouble free” cards. She looked at it,
rolled her eyes and slid it back to me.
Of course the Staples marketing sleaze bags won the battle. I never mailed
in the receipt for the rebate. I’m sure they count on that. They will lose the
war. I now ignore their advertised specials and shop at Office Depot, or any
other office supply store and am no longer be a loyal Staples customer.
I’ve had a few doozies lately. Someone cut in front of me with a car. In
most cities the car would’ve stopped, but this is NY so they sped up to make
sure I wouldn’t walk in front of it. I had an instant aggressive reaction and
spit at the car. This is something I never would’ve done in the past. It’s
outside my nature. Of course as FTD luck
would have it, the drivers’ side window was open and the driver got nailed in
the face. It just sort of happened. Turned out it was a woman and she was
shocked. Didn’t even faze me. Later it
hit me and I was in a bit of shock to say the least. I rarely left the
apartment for the next few days.
Seems I’m slowly becoming
more “in your face” reactionary aggressive.
Though these incidents worry me, they’re not the norm. I was at a
restaurant with a friend Friday night. I told the young waitress how beautiful
her moon face was and asked if she was Native American. She told me she was
Indian from Honduras. She told me she
was light skinned which was unusual for Honduras. They were mostly very dark.
Ah, ha. I found my opening and went into an FTD rant. I told her that since she
was light skinned her great, great, great, great grandmother was probably a beautiful
Indian woman, who was raped in a village that was pillaged by Christopher
Columbus’s New World plunderers. She was now a mutt with a beautiful mixture. We
all laughed, had a good time with a free round of wine and beer.
Anyway, these things happen and I start thinking about the future and
possibly chemicals or medicines to calm the aggression. The thought of going on
those meds so I can be a happy, flatlined zombie smiling douchebag rattles me. It’s always nice to have a good friend around
like Sheila who tells me I need to stay the way I am. It’s easy to listen to
the pill pushers.
I’d rather keep the edge and be the apathetic FTD asshole that lovingly raids and breaks up caregiver pity parties by offering to play a violin, while letting them know at least there not slowly dying of FTD.
As someone with FTD, I demand nothing less than caregivers make the most of life when their FTD’er is gone. That’s their obligation to the one they love, because he or she wants that for them with all their heart and soul. Nothing less is acceptable. I have the same attitude with functioning FTD’ers that they need to live l life as well as they can with purpose and happiness for as long as they can.
(New Forbes FTD series patient profile article)
Brandt Henderson
Howard
Wednesday, June 6, 2012
FTD and Apathy
(Forbes FTD series patient profile at the end of article)
Joanne Douglas
Well I’m back at McBucks ‘181’. I was contacted by some of the other
dissidents and we agreed to have ‘reunion Tuesdays’. I missed the staff of
McBucks and the cast of characters that hangs out there. It’ll be nice to see
everyone for a couple of hours before my support group, ‘Memory Club”.
It’s always talked about how people suffering from FTD are apathetic or
non-caring because of brain damaged sustained. It’s true and is one of the
symptoms I’m constantly fighting. It’s organic, so I don’t know how long and
how successful I’ll be fighting to care.
Alzheimer’s and FTD patients suffer that same eerie feeling of normalcy; yet knowing we’re off. If you’re familiar with peoples in FTD world,
you constantly hear us say, “we’re fine and nothings wrong ”. We know our
thought process is off, but can’t tell exactly what because we feel fine. When
you have a cold you feel the symptoms. Running nose, fever, sneezing and a
cough.
With Alzheimer’s, patients realize there’s something wrong with there
memory. With FTD, many of us realize our thought process is awry and
behavior is off. Take that and combine it with apathy and you couldn’t find a
better combination on any Chinese menu. What it means is we do what we feel
like doing, say what we want and couldn’t care less about the ramifications.
Each person with FTD is a totally different case. Some get aggressive or
violent. Others just say or do irrational or goofy things. Medications are
usually necessary sooner or later to help manage the symptoms and try and
maintain a sense of baance. All of us are stuck in this weird parallel
universe. There’s nothing like being aware you’re out of control, yet helpless
to do anything about it. Most aren't even aware at all that there's anything wrong, but some of us are aware that we're not aware.
Our thinking is off and we become apathetic. What a combination. How do I
handle being apathetic? I bust my butt, like with everything else. Sometimes
I’m successful and sometimes I’m not. It would be very easy to talk about
myself and not think about or care for anyone else. If you ask anyone who knows
me, they would tell at times it’s all about Howard.
Even though the world now revolves only around me; I do have a need to be a
part of it. There are people I love and I don’t want to be more isolated than I
am or hurt them. While in a conversation I really need to put a lot of energy in making sure it goes both ways. I now fight myself in
every conversation to ask about the other person and to have the conversation
go to both ways. Even if I'm engaged in a conversation of little or no interest to me, I still fight and make it a habit of forcing myself to care.
I actually do care, but have to force myself to care and show it. Each time
I send an email of text, I force myself to go over it before I send it to make
sure I ask about the other person or answer that person’s questions. When I’m
with someone I know, I’m acutely aware and constantly reminding myself to ask
about them. The longer the conversation, the more apt I am to start losing
interest in them or the conversation. It’s exhausting trying to keep engaged.
When in a conversation with someone I don’t know or aren’t interested in, I
can blow them off in a heartbeat and couldn’t care less. Rudeness or
inappropriate remarks are sometimes realized later if at all.
I’m Seattle bound June 16th-22nd for my daughters HS
graduation. Haven’t seen my kids for a while and can’t wait. I deeply appreciate the generosity of my good
friend Tamara and my mother that is enabling me to go on this trip.
While in Seattle I will have some free time so if there’s anyone out there
that knows me from my blog and would like to get together for coffee or a bite,
let me know. It would be fun. howardjglick@gmail.com
(Forbes FTD series patient profile article)
Joanne Douglas
Forbes- FTD Patient Series When Words Fail -a professor-to-lose-her-power-of-speech/
Forbes- FTD Patient Series When Words Fail -a professor-to-lose-her-power-of-speech/
Howard
Friday, June 1, 2012
Help has Arrived & Forbes FTD Professor Interview
(New Forbes FTD series patient profile at the end of article)
Joanne Douglas
Many people have asked me about my long term
planning. It seems that’s coming together. Recently I’ve reconnected with an
old friend who I haven’t had contact with since the 80’s. Glenn, together with
Marc is helping me pulling everything together such as wills, power or
attorney, trusts etc. There are so many things I can’t grasp. I can trust Glenn
and Marc.
Trust means so much to someone with FTD.
You literally put your life
in someone else’s hands. A couple of years ago I stupidly let a questionable
relative into my life when I was diagnosed with FTD. I was warned by people that knew this individual. He turned my life into a
nightmare. I later found out he has a horrible criminal history and what he did
to me, he’s been arrested for multiple times in the past. There’s no lower scum
in life than someone that takes advantage of someone disabled. The NYC police
have taken this seriously enough to get involved. Subpoenaed information now
backs up my version of what occurred.
Updates: Starbuck’s and Blimping out
Blimping out:
I want to thank everyone for all their concern
and helpful comments on my “walrus-ing” issues. Much of many of my issues are
due to decline in my executive functions, meaning I can’t put things together
to make decisions. Yes, even basic decisions such as meals become confusing, stifling
events. One person currently living in Istanbul, Turkey researched and directed
me to an organization here in NYC that helps people that can’t properly shop
and cook meals due to illness. I want to thank that global caregiver and
hopefully one day we will share some Turkish coffee.
The, “God’s Love We Deliver” charity has been a
dream to deal with. As with anything these days there’s a myriad of paperwork
and interview process. I downloaded the 4 sets of forms that needed to be
filled out. Social Worker, Doctor, HIPPA, and personal info. Riverstone “Memory
Club” Milagros and Carmen helped me with the paperwork. I phone interviewed
yesterday with Bernadine from GLWD and on Monday they start delivery. I
actually spoke with Bernadine about 4-5 times in the last couple of days,
driving her crazy as only an FTD’er can. She took it all in stride and was
extremely nice and helpful. In this era of cold, unhelpful social services she
was an absolute delight. GLWE will be supplying me with lunch and dinner Monday
– Friday with deliveries on Monday and Wednesday. The only caveat being on need
to be home for delivery, which is between 8:30am and 4:30pm. I’m still not sure
why the whole universe isn’t wrapped around me, but I’m extremely grateful for
the help.
I’m hoping this charitable service will enable me
to be more productive with my time and that additional time can be used to help
others. It’s impossible to describe how difficult life is when you spend so
much valuable time in confusion because you can’t decide how or what to eat.
The Universe is looking out for me because ‘God’s
Love We Deliver’ is starting 2 weeks before my Food Stamps get cancelled. There
was no way I could get through and respond to the 26-page document they sent
me. NYC Dept. of Health and Welfare requested everything but my used toe nail
clippings. On top of that I need a 2 hour hearing to determine whether I can be
recertified for 73 cents a day or $19 a month.
Starbucks: Since I wrote my Starbucks blog and a
many of the regulars scattered from McBucks ‘181’ a few things have happened.
There has been another article in Forbes about Starbucks changing its
philosophy as well as much talk on social media.
Last week I was in Starbucks ‘145’ and I saw
someone eating the most pathetic looking breakfast in the world. A couple of
eggs on a small plain round white plate with flat bacon across the top. Next to
it was plastic utensils wrapped in clear plastic. It looked so institutional. I
took a picture of this and mentioned to the person that this was just about the
most unappetizing meal I’ve ever seen. Starbucks had joined the lower ranks of
fast food. The man told me he had a fast food background and there’s a huge
difference between Starbucks and fast food. He was passionate in making the
pathetic meal in front of him seem identical to food served at the Waldorf
Astoria. I was trying to read this well tailored, kempt man. Was he delusional
or just insane? We continued to talk and I kept having the feeling I knew this
guy. He confirmed that I did know him having previously spoken to him at
McBucks 181. He worked for the Starbucks corporation. That’s all I had to hear
and I asked if I could join him after I had already sat down across from him.
He put a paper napkin over the meal, realizing he wouldn’t be eating soon. I
didn’t think about how rude I was till later, so if you’re reading this Damien,
I apologize. Turned out Damien worked for the Starbucks corporation and was
there district manager. We spoke for over a half our about Starbucks and FTD. He
was already versed on FTD from a previous ‘181’ conversation. Impossible to sit
across from me for more than 5 minutes and not get FTD educated. I told him
about my Starbuck’s blog article and how many felt Starbucks was going down the
tubes. Damien noted my concerns and told me he was going to pass them up to his
boss and someone up the line might call. (and the check’s in the mail)
Sure enough last night, his supervisor did call
me and we had a very nice conversation. She asked what changes I thought could
be made at McBucks ‘181’ without a whole scale renovation. I spoke and she was
attentive without getting defensive or regurgitating the corporate line. I also
told her how important Starbucks was to me, enabling me to live a purposeful
life, with FTD. I educated her about FTD and the “Howard’s Brain” film project.
All and all, it was refreshing to see a corporation such as Starbucks have
wonderful representatives and that were actually listening to customers.
It was just announced that a new small family
owned café, ‘Buunni Coffee’ will be opening one block from my building. I’m
looking forward to having another place to go. I love Starbucks ‘145’, but it’s
a subway schlep.
Forbes- FTD Patient Series When Words Fail -a professor-to-lose-her-power-of-speech/
Howard
(New Forbes FTD series patient profile article)
Joanne Douglas
Forbes- FTD Patient Series When Words Fail -a professor-to-lose-her-power-of-speech/
Howard
Thursday, May 24, 2012
FTD Weight Gain & 3rd Forbes Interview with Young Minister Parent
(New Forbes FTD series patient profile at the end of article)
Matt Rouse
Well, I’m blimping out. I don’t have any idea how much weight I’ve gained,
but it’s been substantial.
Also just realized I need new reading glasses because I’m having trouble
reading the screen. Duh, guess it would help if I had my glasses on to begin
with. That’s not an FTD thing, that’s a common life experience.
Anyway, back to the walrus-ing of Howard Glick. It’s been happening for
months, but’s been particularly bad of late. Last week I threw out half a
refrigerator worth of food. Full-unopened moldy Costco spring salad and other
rotting fruits and vegetables. This morning I opened the fridge and the only
recent addition is organic milk, which I have with my cheerios at 5:20am each
day. At least the fridge will be easy to clean with nothing in it. My freezer
is full of fish which I do have a couple of times a week. Filled it up 6 months
to a year ago with Costco bulk fish products and cannibalize it once in a
while.
I have money for food, so what’s the problem. The problem is I stand at
the fridge with the door open and can’t make a simple decision what to have.
This is a bit more than your basic indecision. This is going back and forth,
staring in and just not being able to figure out what to do.
Then I head out to the local supermarkets, usually wandering isle to isle and not buying anything. Sometimes i partially fill up a shopping cart and just leave. I get confused over prices and items.
Then I head out to the local supermarkets, usually wandering isle to isle and not buying anything. Sometimes i partially fill up a shopping cart and just leave. I get confused over prices and items.
What happens from here is one of two things. The first is I order Chinese
take-out or pizza. Lately it’s mostly Chinese because my friend Alice will do
me bodily harm if I order pizza. She can tell if I’ve had pizza just by texting
me hello. Chinese or pizza is the
beginning of the problem. If I order a pizza pie, I eat the whole thing. Just
can’t stop. Has nothing to do with being hungry, I eat way past the hungry
stage. I just keep shoveling it in, consciously or unconsciously till it’s
gone. I do the same thing with Chinese or anything else, but pizza’s the most
dangerous.
Many with FTD have sweet tooth’s. Not me. My mother had type 1 diabetes
since before I was born; I grew up without any sugar in the house. I naturally
don’t care for sweets.
I also rarely prepare hot foods these days unless I nuke em. Incidents of
forgetting things on the burners have made me cooking wary.
These days fruits and veggies just don’t do it for me, I’ve turned to a
hard-core carb routine and it shows.
I’m stuck in a rut. It’s happened
before but this time I’m having trouble instituting change.
Many of you in and out of FTD world have
dealt with this. I welcome your suggestions though comments here, elsewhere or
email.
I
desperately need to de-walrus-fy.
Forbes Patient Profile Series
Matt Rouse
Howard
howardjglick@gmail.com
Subscribe to:
Posts (Atom)