Thursday, August 30, 2012

Sandwich Boy

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.


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. 


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?


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


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.

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. 


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 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.


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.