In July 2010, I re-entered the world as we know it. I spent about 7 weeks in the hospital psych ward and was relieved to find out I wasn't bipolar. Now I had a some new weird opponent called FTD to face. Returning to my apartment alone and broke, I also needed to find specialized medical help and had to start dealing with insurance companies. I had medicare and a supplemental insurance carrier.
If you have straight medicare, you probably pay 80/20. There are many free medicare supplemental programs you can join for free.
I called my medicare supplemental insurer, Fidelis who gave me the names of 2 neurologists in my area. I googled each name and I found Dr. Kyra Blatt who was highly qualified and specialized in dementia. I started seeing Dr. Blatt, a community doctor who I loved dearly and had gone way out of her way to help me. Dr. Blatt gave me some of the best advice I since being diagnosed. I was literally going crazy having learned I had FTD and was combing the internet for all information on this dreadful disease. Everything pointed to a soon to come drastic death. Dr. Blatt banned me from reading about FTD on the internet because there was so much inaccurate information. She told me she would've died a dozen times in the last month if she self diagnosed from the internet.
I was all shrink-ed out after 6+ years of hell. 17 pills a day, over 50 ECT's Electric Shock Treatments, VNS Vagus Nerve Stimulator surgically implanted in my chest with a wire running toward's the Vagus nerve to give my brain shocks. I fired my current psychiatrist and decided I could do a better job, so I hired myself.
Now that I was off the 17 pills a day after being misdiagnosed for six years my head was slowly clearing from being kept in a medically induced fog. It took me close to a year to recover to my FTD self. My behavior, language and 6 year history was like a checklist for a poster boy FTD patient. I was having many new difficulties which was discovered by my friend David and Dr. Blatt to have been side effects of the only drug I was on, Aricept. Dr. Blatt had contacted Dr. Ted Huey, a well known FTD specialist at Columbia. Dr. Huey confirmed that many FTD patients were having difficulty with Aricept, a drug made for Alzheimer's patients. Aricept is now on the "medications to avoid" list by UCSF. Dr. Blatt suggested that I start seeing Dr. Huey or one of the FTD specialists at Columbia. The only problem was my insurance didn't cover Columbia or any of the doctors in it.
At the same time I developed prostate cancer and my Urologist for that was out of St. Lukes hospital which was far from where I lived. I needed to have my prostate removed and surgery needed to be arranged. All the above was happening in November 2010 so I needed to act fast. It was open enrollment time for Medicare and I needed new insurance by December 31st.
The Medicare supplemental carriers were like vultures. I made some calls to the insurance carriers and found them extremely accommodating. They had free breakfasts at local diners, would come directly to my home and all sorts of fun places to meet. Each one had a yellow page type directory saying they covered just about every doctor in NYC. Each one also tried to close me like a used car salesman. My head was swimming and I was getting no where.
Finally I decided to do things reversed. Instead of looking at insurance companies and checking out there doctors and yellow page type plans, I decided to find the doctors and hospital I wanted, then find which insurance company met my needs. I needed to find the "Best and the Brightest" docs out there.
Columbia University Medical center was near me, so I started researching there doctors. Once I found out what doctors I wanted, I started calling there office managers and finding out which medicare insurance carriers they took.
I had long lists of up to 10 insurance carriers per doctor. It was painstaking work cross referencing, but I needed excellent for the major medical issues I had.
My priority was of course finding the best neurologist who was familiar with FTD. I met doctors Ted Huey and Karen Bell and liked them both. I was at an award diner where Dr. Bell won an award for being a top neurologist from Columbia. Dr. Bell was my age and from the area I grew in so there was a connection. Oxford Insurance was on Dr. Bells list.
I needed a Surgeon to remove my cancerous prostate. I found Dr. Ketan Badani was the Director of Robotic Surgery from Columbia. I met with him and liked him. Oxford.
My GP luckily took Oxford so I wouldn't need to change him.
My future Cardiologist is also a resident of Columbia and Harvard Med School grad. Oxford, yes!!!
I called the Oxford rep and she was at my apartment the next day signing me up.
One of the reasons I'm doing well is I have excellent caring doctors. There's nothing that can be done with my FTD, but Dr. Bell is experienced, intelligent and I trust her implicitly and she always has excellent advise for me. In fact, every one of my doctors I trust my life with. I've had enough screwballs and now when I see a doctor I know they listen to me and care. I'm not just a number. I
I receive letters all the time from people having incredible difficulties with there doctors. My advice, go do the research on the internet and find the best doctors in your area. Check there insurance with the office manager and then go meet and interview them. It's only your life at stake. PS don't trust the online insurance carrier list of docs. They change insurance frequently. Check with the office manager.
Right now it's open enrollment time for Medicare. You can change carriers now. For those of you with choices of insurance carriers, do the same. Put in the effort to find the best docs you get a long with. You and your health will be thankful.
Howard
Thursday, November 29, 2012
Tuesday, November 27, 2012
FTD - Down a pill, up a symptom
Down a pill, up a symptom. Seems like they should be linked, but there not. The new symptom started a couple of weeks ago. I was hoping it would go away, but hasn't. My lip and right hand have developed slight tremors. Not all the time, but it has been coming back consistently. My lip feels like it has electricity running through it. Right now I notice it, but it doesn't effect me at all. Hopefully it'll stay that way. If not, well just something else to deal with on the vast chalkboard of FTD symptoms.
For the last year or more I've had this indiscriminate cough. It comes and goes. No rhyme or reason, just a pain in the ass dry cough. No phlegm involved. I'm down to just a few medicines for my heart and blood pressure, so it was easy to look up side effects. Sure enough, Lisiniprol one of my blood pressure medications was the culprit. It was listed first as the most frequent side effect. Three days off and no more cough. Of course I should contact my cardiologist, but since I never even followed up after the results of my tests a month ago, why bother. I'm all doctored out.
*I now have a follow up appointment with my Cardiologist for next week.
I did have a nice surprise at my local pharmacy. It's a neighborhood place and they've known me forever. I picked up my usual assortment of pills. The only difference was this time there was no charge. I asked why and the guy behind the counter shrugged his shoulders and smiled. I've no idea what's going on. Guess I have a "drugstore angel." Happened to me there a couple of years ago with pharmaceuticals and other things I tried to purchase. Another wonderful mystery.
Things have been very quiet with me lately. I've been spending a few hours a day at "Cafe Bunni" and heading home. I'm not sure why I feel like I'm doing nothing with my life, but I feel so vacant. I guess I do to much of nothing and I'm just not used to doing nothing. Yet, I feel so comfortable doing nothing, but it's not me. Then again, me isn't me anymore. With FTD it seems me keeps changing.
Howard
For the last year or more I've had this indiscriminate cough. It comes and goes. No rhyme or reason, just a pain in the ass dry cough. No phlegm involved. I'm down to just a few medicines for my heart and blood pressure, so it was easy to look up side effects. Sure enough, Lisiniprol one of my blood pressure medications was the culprit. It was listed first as the most frequent side effect. Three days off and no more cough. Of course I should contact my cardiologist, but since I never even followed up after the results of my tests a month ago, why bother. I'm all doctored out.
*I now have a follow up appointment with my Cardiologist for next week.
I did have a nice surprise at my local pharmacy. It's a neighborhood place and they've known me forever. I picked up my usual assortment of pills. The only difference was this time there was no charge. I asked why and the guy behind the counter shrugged his shoulders and smiled. I've no idea what's going on. Guess I have a "drugstore angel." Happened to me there a couple of years ago with pharmaceuticals and other things I tried to purchase. Another wonderful mystery.
Things have been very quiet with me lately. I've been spending a few hours a day at "Cafe Bunni" and heading home. I'm not sure why I feel like I'm doing nothing with my life, but I feel so vacant. I guess I do to much of nothing and I'm just not used to doing nothing. Yet, I feel so comfortable doing nothing, but it's not me. Then again, me isn't me anymore. With FTD it seems me keeps changing.
Howard
Sunday, November 25, 2012
FTD and Instant On
Thanksgiving was wonderful. I spent it at my friends Steve and Sheila. They had about15- 20 people there. It was a wonderful experience being around such wonderful people, many of whom I see once a year. Each person makes a dish so there's plenty of food. I usually bring bring ice and alcohol. This year I offered to make a big salad for everyone. I went up to Costco and another couple of stores Tuesday to pick up salad materials. I made a bit of a mistake acquiring salad materials. Instead of purchasing enough for 20 people, I bought enough for a small army. I didn't realize as I went from store to store I kept buying the same thing over and over. Plus in a desperate effort to get out, I was just grabbing, throwing in the cart and running. There's enough varieties of lettuce in my fridge to open a lettuce museum. My refrigerator is busting and never has been so full of veggies. I also killed my budget for the month. I forgot about my GLWD "Gods" Love We Deliver" delivery Wednesday so I'll be on the saladian rabbit program for a while. It'll help me lose the nearly 50 pounds I gained this year. That makes 3 weeks this month I've missed GLWD (2 because of Sandy). Today is Saturday and I still can't get into my fridge. I'm sure I'll give away a lot before it spoils.
A friend of mine just walked into Cafe Bunni. She'll take some salad off my hands. We're on the way to get almond peanut butter and other food outside the neighborhood. Almond butter is $11 at the local rip off store. I told her I have almond butter I could give her. She told me that she's seen mine and it expired a long time ago like everything else in my cabinet. Guess it's not like twinkies, that last as long as mummified Pharaohs. Whenever she comes over and I make anything, she checks out the exp. date and insinuates I live in a hazardous material zone. Hey, besides FTD, cancer, heart disease and obesity I'm perfectly healthy and don't get sick more than once every couple of weeks. Last week I did make chicken. I made a big bag of thighs so I would have enough for a few days. Sort of forgot about it and found it sitting out a day later. Didn't even think about it. Had a piece and ate the rest over the next few days.
A friend of mine just walked into Cafe Bunni. She'll take some salad off my hands. We're on the way to get almond peanut butter and other food outside the neighborhood. Almond butter is $11 at the local rip off store. I told her I have almond butter I could give her. She told me that she's seen mine and it expired a long time ago like everything else in my cabinet. Guess it's not like twinkies, that last as long as mummified Pharaohs. Whenever she comes over and I make anything, she checks out the exp. date and insinuates I live in a hazardous material zone. Hey, besides FTD, cancer, heart disease and obesity I'm perfectly healthy and don't get sick more than once every couple of weeks. Last week I did make chicken. I made a big bag of thighs so I would have enough for a few days. Sort of forgot about it and found it sitting out a day later. Didn't even think about it. Had a piece and ate the rest over the next few days.
I've had to slow down quite a bit and retool my "instant on" mode. "Instant on" to me is when I become aware that I've been unaware of how inappropriate my behavior has been when I've created a mess. Normally it's not till hours or days that my "instant on" clicks and I realize what happened. Maybe It should be renamed "slow motion instant on." When it hits me what happened I usually don't care, but am aware of the realization what happened. Next is to deal with it, even though I don't care.
*Just had a friend read the previous paragraph. It made sense when I wrote it yesterday, but I just reread it 5+ times now and can't follow it. She says it makes sense and that's good enough for me.
*Just had a friend read the previous paragraph. It made sense when I wrote it yesterday, but I just reread it 5+ times now and can't follow it. She says it makes sense and that's good enough for me.
I do realize that things are a just a wee bit out of control in many aspects of my life. My routine needs to be more structured and I need to add many little things that are falling through the cracks. I decided to order a dry/erase calendar board. Ordered a cheap one from Amazon. This way I can add a task a day to what I'm doing and put a red asterisk next to critical things.
I just have to keep adjusting things to try and make things smoother as well as life easier.
Howard
Howard
Wednesday, November 21, 2012
FTD and Autism
The FTD and autism correlation question comes up frequently. I also notice family members of FTD patients frequently mention they have children with autism.
Last week I posed the question to the AFTD helpline to see if there was any research investigating a possible relationship between FTD and Autism. The AFTD helpline is a free service for FTD Patients, Caregivers and the public to get accurate answers to FTD questions. The following answer was given to me by Sharon Denny, the AFTD Program Director:
There is also evidence that oxytocin (a hormone that acts as a neurotransmitter in the brain) shows some benefit on social behavior in autism. An initial study of oxytocin in Jan 2012 with people with FTD showed possible temporary benefit in reduction of social behavior symptoms. This needs to undergo more research though before oxytocin would be prescribed as a treatment.
These examples are two ways that researchers are trying to learn why and how social thinking and behavior symptoms occur in different disorders. It's interesting stuff, but does not indicate that the various disorders are linked through a common cause, gene, or pathology.
Last week I posed the question to the AFTD helpline to see if there was any research investigating a possible relationship between FTD and Autism. The AFTD helpline is a free service for FTD Patients, Caregivers and the public to get accurate answers to FTD questions. The following answer was given to me by Sharon Denny, the AFTD Program Director:
AFTD Helpline - 866-507-7222
There is certainly similarity between some of social behavior in bvFTD and in autism (withdrawal, emotional blunting, social inappropriateness, lack of empathy). The similarity has prompted researchers to study how social thinking and behavior are controlled in the brain. However, there is no evidence that directly links the disorders. Autism is a developmental disability that begins in childhood and FTD a neurodegenerative disease with an adult onset.
Researchers are looking into similarities in social behavior. Schizophrenia has some similar symptoms and is another area of research. If scientists can understand what cells, chemical transmitters, etc. contribute to the behaviors it will advance understanding and possibly in time treatment for various disorders.
One of the main areas of interest is something called von Economo neurons (VEN) which are brain cells that are involved in social behavior. Only higher mammals and humans have them and they ate found in the brain's frontal love in the anterior cingulate and frontal insular cortex areas. These areas are involved in autism, and vulnerable in bvFTD, but much less so in Alzheimer's.
These examples are two ways that researchers are trying to learn why and how social thinking and behavior symptoms occur in different disorders. It's interesting stuff, but does not indicate that the various disorders are linked through a common cause, gene, or pathology.
Sharon Denny
Program Director
AFTD
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Thanksgiving's has arrived and I'm trying to figure out what there is to be thankful for: Absolutely nothing.
Just kidding!!!
It's amazing when you have almost nothing left to lose, how much there is to gain.
I've had to face many challenges over the last year. Amazingly, the year is coming to an end and I'm coming out on top. I've needed help in many areas and magically it appeared. Random acts of kindness from people who I know and many from people I've never met or spoken to.
Then there's my "white whale" FTD. FTD is still hanging out, but I'm still ruling Howard's Brain. Where FTD is progressing, it's slow enough to hopefully keep me around for many a year.
Somehow I just lost the rest of what I wrote here. (NAFW) is in effect and I didn't curse out loud. Oh well, there will always be a tomorrow.
Howard
Somehow I just lost the rest of what I wrote here. (NAFW) is in effect and I didn't curse out loud. Oh well, there will always be a tomorrow.
Have a Happy Thanksgiving!!!
Howard
Monday, November 19, 2012
FTD and Decision Making
Went to Cafe Bunni for a couple of hours and got some work done this morning. Cafe Bunni is nice and quiet till about 9:30 -10am. Then it converts to Bunny Cafe Daycare and I'm so out of there.
Started heading downtown by subway around 10am. I need a blanket cover and I want to get some cheap picture frames. I have no pics on the walls and I'd like to have my kids and friends up there. Into the the NYC Subway system I vaunted. After two stops I realized I was already out of it and finished for the day. Still, I might be able to find some of these items in Century 21. I then thought about the last time I was there. It was about a year ago. I went there looking for picture frames and a blanket cover. It was also crowded. I shopped for about 30 minutes in the crowded store and left empty handed because of indecisiveness and went home. In fact, I've seen the same exact movie quite a few times going to that same store and now I was about to have a repeat experience. But maybe, just maybe I could get the stuff.
As I sat in the "A" train reality settled in. I got off the train and switched to the other side of the tracks going the other way. 15 minutes later I was texting a friend what happened and texted, "I hate being F __ing sick". She soon texted back that she remembered me doing the exact same thing last year. She texted, "At least your not getting worse--you had the foresight to turn around this time". Then she texted, "Thinking about it like that actually makes me happy".
I couldn't help but laugh. I texted her that she's warped and I love her. She was right. I know FTD is slowly progressing but I'm dealing with it better and that's half the battle for now. I'm not nearly as stressed out and going crazy over the FTD symptoms as I was a year ago. Hey, for the moment I'm controlling this strange disease. I've also calmed down quite a bit. I spend most of the time at home alone and don't push myself anymore. The noise, hustle and bustle of the out side world it just to much for me.
If I go to Costco with a little list of exactly what I want it's no problem. I zip through and leave exactly what I came for, if not less. Sometimes I'll see something else I need and pick it up, but 90% of the time I'll leave it in an isle before I get to the cash register. Then of course at the cash register I panic over money and leave some things I came for anyway. At home, it's easier. for half my meals I've GLWD -"God's Love We Deliver". They come in aluminum containers and I throw it in my mini-oven not knowing what's in it. NO DECISION NECESSARY.
That's what it's all about. My decision making process is shot. It's amazing that a part of the brain enables us to make decisions and choices. I forgot if that's the Fontal or Temporal lobe, but it's one of the two.
Have thought it out with the part of my brain that works and decided I will go back to Century 21, except I will go early. It opens at 7:45am, so I'll skip McBucks or Bunny and head there when I'm fresh. I really don't know if I'll be able to make decisions even when I'm fresh, but I'm going to give it a shot.
Life is not boring and I'm happy that I've got this figured out whether it works or not.
Howard
Started heading downtown by subway around 10am. I need a blanket cover and I want to get some cheap picture frames. I have no pics on the walls and I'd like to have my kids and friends up there. Into the the NYC Subway system I vaunted. After two stops I realized I was already out of it and finished for the day. Still, I might be able to find some of these items in Century 21. I then thought about the last time I was there. It was about a year ago. I went there looking for picture frames and a blanket cover. It was also crowded. I shopped for about 30 minutes in the crowded store and left empty handed because of indecisiveness and went home. In fact, I've seen the same exact movie quite a few times going to that same store and now I was about to have a repeat experience. But maybe, just maybe I could get the stuff.
As I sat in the "A" train reality settled in. I got off the train and switched to the other side of the tracks going the other way. 15 minutes later I was texting a friend what happened and texted, "I hate being F __ing sick". She soon texted back that she remembered me doing the exact same thing last year. She texted, "At least your not getting worse--you had the foresight to turn around this time". Then she texted, "Thinking about it like that actually makes me happy".
I couldn't help but laugh. I texted her that she's warped and I love her. She was right. I know FTD is slowly progressing but I'm dealing with it better and that's half the battle for now. I'm not nearly as stressed out and going crazy over the FTD symptoms as I was a year ago. Hey, for the moment I'm controlling this strange disease. I've also calmed down quite a bit. I spend most of the time at home alone and don't push myself anymore. The noise, hustle and bustle of the out side world it just to much for me.
If I go to Costco with a little list of exactly what I want it's no problem. I zip through and leave exactly what I came for, if not less. Sometimes I'll see something else I need and pick it up, but 90% of the time I'll leave it in an isle before I get to the cash register. Then of course at the cash register I panic over money and leave some things I came for anyway. At home, it's easier. for half my meals I've GLWD -"God's Love We Deliver". They come in aluminum containers and I throw it in my mini-oven not knowing what's in it. NO DECISION NECESSARY.
That's what it's all about. My decision making process is shot. It's amazing that a part of the brain enables us to make decisions and choices. I forgot if that's the Fontal or Temporal lobe, but it's one of the two.
Have thought it out with the part of my brain that works and decided I will go back to Century 21, except I will go early. It opens at 7:45am, so I'll skip McBucks or Bunny and head there when I'm fresh. I really don't know if I'll be able to make decisions even when I'm fresh, but I'm going to give it a shot.
Life is not boring and I'm happy that I've got this figured out whether it works or not.
Howard
Tuesday, November 13, 2012
FTD and Heaven on Earth
Well, just finished educating someone to FTD, so my evangelistic advocacy campaign to educate goes on. It's an idiosymplamtic part of my existence to educate till everyone on Earth knows that FTD is Frontotemporal Degeneration and not a flower delivery service. Time is standing still for me, so I have all the time in the world. It would be so easy just to sit in my apartment all day and do absolutely nothing. FTD just keeps dragging you to a unmotivated, secluded place. Each morning I set off on a new plan to escape my brain inflicted isolation.
I'm still smiling while over at an incident a few of weeks ago at Columbia. I was there for a Stress Echocardiogram. The test took about 45 minutes. Of course I jabbered on about FTD. On the way out I passed the doc and assistants and waved. One waved and said they were watching the 'Howard's Brain" film trailer. I stuck my head in and noticed one computer with my blog on it and the running the trailer. Bonus, medical personal getting educated. *** Just realized that I never called to get the results of all my heart tests. Ooops, well I guess my hearts still beating.
Everyone once in a while something happens that reminds me that there is heaven on earth. I've been struggling for months to try and find a way to see my kids for winter break. Trying to organize anything has had me so confused and stressed lately. Yesterday I received an email that a person who I've never met or spoken to before arranged 2 tickets for both my children to come visit me in NYC from Seattle. This was an amazing show of generosity by someone who has a family member with FTD and realizes how important it is to be around family. Eric Zuckerman is also making an FTD documentary called, "Project Remember" which I'm honored to have been asked to participate in.
Had a conference call yesterday. Running it was Sharon Denny of AFTD, who was helping me and 2 members of "team Howard" Marc and Alice organize "end of life" and "rest of life" plans. There are others that will be helping, but Marc and Alice will help expedite things I need to get done along with help of some other close friends. I'm so lucky to have such loving friends around me. Without my friends I would've never made it. First on the list is my "will" and work on getting my disability from *Unum reinstated. AFTD is available to help those families or individuals that need proper guidance in dealing with future planning or learning about FTD.
There is also a link on the right hand side to a FTD documentary made by patient Susan Grant called, "Planning for Hope" which discusses long term planning.
*Unum is the despicable Long Term Disability insurance company that refuses to reinstate my disability because of a legal technicality. They were already fined 15 million dollars and and forced to reassess 200,000 cases because of there unfair practices. A drop in the bucket for a 6 Billion dollar company. They are now cloaking there screwing of people better according to legal articles. Of course I always go off on a Unum rant, because it's proven when I was working I had FTD and was forced out. I may never get my disability reinstated, but I will be a pesky mosquito that they will have to constantly swat at.
Ying and Yang - The generosity of the individual helping me see my children during winter break far outweighs the screwing I'm getting from Unum. I'll make sure I keep that in my brain and make sure it gives me the strength to beat down my other FTD demon symptoms that haunt me.
Any hope and acts of random kindness I get goes on for miles and is deeply appreciated.
Howard
I'm still smiling while over at an incident a few of weeks ago at Columbia. I was there for a Stress Echocardiogram. The test took about 45 minutes. Of course I jabbered on about FTD. On the way out I passed the doc and assistants and waved. One waved and said they were watching the 'Howard's Brain" film trailer. I stuck my head in and noticed one computer with my blog on it and the running the trailer. Bonus, medical personal getting educated. *** Just realized that I never called to get the results of all my heart tests. Ooops, well I guess my hearts still beating.
Everyone once in a while something happens that reminds me that there is heaven on earth. I've been struggling for months to try and find a way to see my kids for winter break. Trying to organize anything has had me so confused and stressed lately. Yesterday I received an email that a person who I've never met or spoken to before arranged 2 tickets for both my children to come visit me in NYC from Seattle. This was an amazing show of generosity by someone who has a family member with FTD and realizes how important it is to be around family. Eric Zuckerman is also making an FTD documentary called, "Project Remember" which I'm honored to have been asked to participate in.
Had a conference call yesterday. Running it was Sharon Denny of AFTD, who was helping me and 2 members of "team Howard" Marc and Alice organize "end of life" and "rest of life" plans. There are others that will be helping, but Marc and Alice will help expedite things I need to get done along with help of some other close friends. I'm so lucky to have such loving friends around me. Without my friends I would've never made it. First on the list is my "will" and work on getting my disability from *Unum reinstated. AFTD is available to help those families or individuals that need proper guidance in dealing with future planning or learning about FTD.
There is also a link on the right hand side to a FTD documentary made by patient Susan Grant called, "Planning for Hope" which discusses long term planning.
*Unum is the despicable Long Term Disability insurance company that refuses to reinstate my disability because of a legal technicality. They were already fined 15 million dollars and and forced to reassess 200,000 cases because of there unfair practices. A drop in the bucket for a 6 Billion dollar company. They are now cloaking there screwing of people better according to legal articles. Of course I always go off on a Unum rant, because it's proven when I was working I had FTD and was forced out. I may never get my disability reinstated, but I will be a pesky mosquito that they will have to constantly swat at.
Ying and Yang - The generosity of the individual helping me see my children during winter break far outweighs the screwing I'm getting from Unum. I'll make sure I keep that in my brain and make sure it gives me the strength to beat down my other FTD demon symptoms that haunt me.
Any hope and acts of random kindness I get goes on for miles and is deeply appreciated.
*For those of you that have a firm diagnosis of FTD. I run an online support group. To join the FTD Patient Support Group, you will find instructions on the upper right hand side under links.
Sunday, November 11, 2012
FTD: "Which child would you like......
"Which child would you like the airplane ticket for?"
I've been lucky enough have a charitable person and an organization offer to fly each of my children to NYC for the upcoming Winter Break. At first I was going to fly to Seattle with the generosity of my friend Tamara's Frequent Flier miles. I booked the ticket and was immediately reminded by many who love me the difficulty I've had on long trips over the last year. Not only being there was difficult, it actually took over a month for me to recover and get back to normal in NYC. My friends were shocked that I booked it without telling anyone. That's because I forgot the extreme difficulties of when I was away.
After all, there's nothing wrong with me. A true feeling most of us with FTD have.
Then it came back to me. The day and a half I was in full panic because I thought I lost my backpack. I didn't sleep at night thinking of where I might of left it. I also went back and forth to the car 5+ times checking to make sure I didn't leave it there. Turned out my friend moved it off the designated "Howard Glick Backpack Chair" because he wanted to sit there. He moved it about 5 feet. Off course he had no idea. Then there was the "Enterprise" car rental debacle where in the end they actually gave me the car for about $45 for the week in order to make me happy so I wouldn't make it the worst day of there lives. The list could go on. I had a wonderful time seeing my kids but it wasn't an easy trip.
Funny, most people with FTD have a difficult time with the airports, flying, hotels etc. That part of traveling is like cruise control for me. I guess years of 120 flights a year make that part of traveling easy. I stick with my traveling mantra, NAFW - "Not a F__ing Word" and that keeps me out of trouble.
Okay back to the present. I've been trying to organize plane tickets for the last week+.... Everything was going around and around in my head trying to figure how to organize getting everything coordinated for the kids. My ability to multitask and organize is in really bad shape now. I just can't put things together. For many of us with FTD this is usually one of the first symptoms that affect us in our occupations. This was a difficulty for me when I first started showing symptoms, but now it's paralyzing.
I was in the office of the organization that was giving me one of the tickets. They had all the paperwork that needed to be filled out in front of them. I figured I had all the bases such as dates etc. done and was ready for anything. The first question threw me had me sitting there staring not knowing what to say. It was a killer. "Which child would you like the airplane ticket for?" the woman asked. I just sat there not having any idea of which to pick and couldn't answer. My mind was a turbulent mess trying to think of if it mattered who got what ticket and if I screwed up. So I just sat there in an uncomfortable silence and finally blurted out my daughters name.
I felt so helpless sitting there not being able to answer or figure out a basic question.
But for now, I've been able to write for the first time since this ticket debacle started.
Keep on Truckin.
Howard
*For those of you that have a firm diagnosis of FTD. I run an online support group. To join the FTD Patient Support Group, you will find instructions on the upper right hand side under links.
Wednesday, November 7, 2012
FTD and Election Day
Yesterday was election day. Of course I had to put my input into who should run the country as well as the mistakes at the electioneering zone. When I arrived at the polling office there was a giant sign stating, Vote Here, election day and all the other nonsense. I pulled the door and it was locked. I rattled it couple of times, but it was really locked. I found another door with a million signs and arrows. I then heard an elderly voice behind me with a European voice say, "Vaht its closed" referring to the voting site being closed. I turned to see ms. Vaht starting to turn to leave. I yelled that the entrance was by me and she waddled over.
Once inside it was a madhouse. I asked to speak to one of the supervisors. A bug eyed rotund guy wearing one inch thick glasses approached me. I explained how the door was locked and people might leave without voting. Ms. Vaht was eagerly reinforced my complaint. Bug eyed guys eyes were literally rolling around in circles. He was distracted by the madness around him. He said it had to be unlocked and he would take care of it. As he walked away I could tell he was overwhelmed and it has a 11% chance of getting done. 20 minutes later still standing on line, he walked by and I stepped out and cut herr portliness off. He looked at me eyes still rolling and I said one word, "door". His mouth opened and then it clicked. "I'll tell the custodian". Still blocking his way I told him when I finish voting if the door is still locked, I'm ripping the sign down. It registered and he walked away.
I voted and on the way out there was a really old lady hunched over a walker. The woman behind the desk was telling ms ancientness she was at the wrong polling station. Ms ancientness declared she's been going there most of her life. I turned, took one step and stopped. NAFW -Not a F---in Word (my mantra) I said to myself. I turned back and left. Of course I checked and found the Vhat door unlocked. Homeward bound.
I know much of what I do and say I can't control, but there is plenty I can. I'm trying my best to keep things under control and stay out of trouble. I've been going out less, actually rarely and only in the mornings to keep things under control, plus I get tired all the time, plus I'm unmotivated, plus the overstimulation gets to me stressed, plus a million of the other smorgasbord of rotating FTD symptoms. Good thing my Subway just started running again. I need to do things or I'll start losing my mind :-)
FTD is a rough disease. The person who gets it slowly loses there mind and at the same time drives everyone around them crazy. At least there's no pain except for testing. That's some consolation for slowly losing your mind.
I've been through every test possible and will not have anymore. Many want to see how fast there digressing and get tested yearly. That's there option. My advise is when you have a firm diagnosis of FTD which is incurable, untreatable and unstoppable. Give your mind, body and wallet a break and go enjoy life. Stress is one of the worst things for an FTD patient and this FTD'er will avoid the medical community when possible.
Spinal tap was the most painful. It was a painful and cruel test. PET scans and other scans are like being in an airplane engine. You can get definitive results for a FTD diagnosis results from PET scans and neuropsych testing. All testing will continue to evolve and change. It wasn't to long ago that a Frontal Lobotomy was totally acceptable. While I was in a medically induced fog and misdiagnosed as bipolar in Seattle some idiot told me the only cure for me would be a Frontal Lobotomy or join his self help group Landmarc. I realize now years later how prophetic our conversation. Every person with FTD Frontal Temporal Dementia comes with an automatic surgery free Frontal Lobotomy au natural.
The only 100% way of be sure you have FTD is an autopsy. I'm looking forward to mine so they can tell me I've had Fluffferfoot and not FTD.
Howard
Once inside it was a madhouse. I asked to speak to one of the supervisors. A bug eyed rotund guy wearing one inch thick glasses approached me. I explained how the door was locked and people might leave without voting. Ms. Vaht was eagerly reinforced my complaint. Bug eyed guys eyes were literally rolling around in circles. He was distracted by the madness around him. He said it had to be unlocked and he would take care of it. As he walked away I could tell he was overwhelmed and it has a 11% chance of getting done. 20 minutes later still standing on line, he walked by and I stepped out and cut herr portliness off. He looked at me eyes still rolling and I said one word, "door". His mouth opened and then it clicked. "I'll tell the custodian". Still blocking his way I told him when I finish voting if the door is still locked, I'm ripping the sign down. It registered and he walked away.
I voted and on the way out there was a really old lady hunched over a walker. The woman behind the desk was telling ms ancientness she was at the wrong polling station. Ms ancientness declared she's been going there most of her life. I turned, took one step and stopped. NAFW -Not a F---in Word (my mantra) I said to myself. I turned back and left. Of course I checked and found the Vhat door unlocked. Homeward bound.
I know much of what I do and say I can't control, but there is plenty I can. I'm trying my best to keep things under control and stay out of trouble. I've been going out less, actually rarely and only in the mornings to keep things under control, plus I get tired all the time, plus I'm unmotivated, plus the overstimulation gets to me stressed, plus a million of the other smorgasbord of rotating FTD symptoms. Good thing my Subway just started running again. I need to do things or I'll start losing my mind :-)
FTD is a rough disease. The person who gets it slowly loses there mind and at the same time drives everyone around them crazy. At least there's no pain except for testing. That's some consolation for slowly losing your mind.
I've been through every test possible and will not have anymore. Many want to see how fast there digressing and get tested yearly. That's there option. My advise is when you have a firm diagnosis of FTD which is incurable, untreatable and unstoppable. Give your mind, body and wallet a break and go enjoy life. Stress is one of the worst things for an FTD patient and this FTD'er will avoid the medical community when possible.
Spinal tap was the most painful. It was a painful and cruel test. PET scans and other scans are like being in an airplane engine. You can get definitive results for a FTD diagnosis results from PET scans and neuropsych testing. All testing will continue to evolve and change. It wasn't to long ago that a Frontal Lobotomy was totally acceptable. While I was in a medically induced fog and misdiagnosed as bipolar in Seattle some idiot told me the only cure for me would be a Frontal Lobotomy or join his self help group Landmarc. I realize now years later how prophetic our conversation. Every person with FTD Frontal Temporal Dementia comes with an automatic surgery free Frontal Lobotomy au natural.
The only 100% way of be sure you have FTD is an autopsy. I'm looking forward to mine so they can tell me I've had Fluffferfoot and not FTD.
Howard
Monday, November 5, 2012
FTD: Pizza on the Wall
The steeple to the left is George Washington High School. Now it is home to between 600-700 displaced by Hurricane Sandy. (shot from my bedroom 11/3)
There is a lot of suffering in NYC and the East Coast. I'm lucky where I live very few were affected by the storm. My ex-wifes home was swept away into the ocean. My weekly delivery from "God's Love We Deliver" didn't make it. A few people have written to me that there making emergency deliveries. I have FTD, but there are people are suffering more than me without electricity, water or displaced. I'd rather it go to people in shelters that have lost everything or people that are house bound or bed bound.
Have a dilemma here. I see my my children twice a year now. When I first moved back to NYC from Seattle 4 years ago, I had plenty of frequent flyer miles and still had money left. I used to see them at least 4 times a year. Now times have changed with FTD and I see them twice a year. Christmas break is fast approaching and the people who offered to help so my kids could come to NYC didn't come through. One friend offered me Frequent Flyer miles for one ticket. At first I thought I'd be able to book one of the kids to NY and then I'd be able to get the other ticket. Unfortunately because of the Holidays it's twice the amount of mileage to come to NYC as to go to Seattle. There was one choice. To book myself a ticket to Seattle and visit my kids for a week. I made the reservation. Traveling is difficult for me these days and recuperating after takes a while. Hey that's life and it's my decision. Unfortunately life is not that simple with friends telling me I jumped the gun, was impulsive shouldn't have booked it. Last time I was there I rented a car and drove fine. I drove a friends car with a stick a few weeks ago and that was okay. Besides, there's no one I dislike enough in Seattle to run over. Not yet anyway. I'd love to switch plans and have Chelsea and Myles come to NYC, but that's not likely.
Of course this whole mess just adds to my stress level. Came close to having a couple of outbursts in the kitchen, but held myself in check saying to myself, "Remember the Pizza". Not so long ago I had an outburst and threw a whole pizza against a wall. Of course the wall I threw it against was above the oven and most of the pie went behind the oven. After cleaning the wall I went to get the Handyman to help move the oven and gas lines to get the Pizza out. He knows I've some strange brain disease and has seen some of my antics. He asked with a smile how the pizza got behind the oven. I told him I was the giving pizza flying lessons so it could self deliver and I wouldn't have tip the delivery boy.
Have canned Starbucks for the moment and am writing from Castle Glick. Some generous people sent me Starbucks e-gift cards and after many months they ran out. I also haven't been enjoying the crowded, noisy McBucks atmosphere. It never really recovered from the renovation mess and I haven't been enjoying myself. As of today I still don't have subway service, so heading downtown is out. I declare myself an official McBucks orphan.
Yesterday, I received a text from Warrioress Diana Winoker. You might remember Diana was featured for the Alice Walton "Forbes" FTD Patient Series.
Diana has FTD and some other major health issues. Dynamic Diana gets up every day and gets out of the house and volunteers somewhere. She has every excuse in the world to sit at home everyday, but instead charges out to volunteer and help with different causes.
Diana was rear ended a couple of days ago and the accident actually had her back ( which was bad already) injured and black and blue. She had to do the hospital thing etc. Guess what, Diana the fighter was out yesterday volunteering for the Tampa Fisher House at James Haley Veterans Hospital. She sat patiently in pain waiting for the golfers to come in while also watching her Tampa Bay Bucs win.
People like Diana make life worth living. People with heart and substance.
Have a dilemma here. I see my my children twice a year now. When I first moved back to NYC from Seattle 4 years ago, I had plenty of frequent flyer miles and still had money left. I used to see them at least 4 times a year. Now times have changed with FTD and I see them twice a year. Christmas break is fast approaching and the people who offered to help so my kids could come to NYC didn't come through. One friend offered me Frequent Flyer miles for one ticket. At first I thought I'd be able to book one of the kids to NY and then I'd be able to get the other ticket. Unfortunately because of the Holidays it's twice the amount of mileage to come to NYC as to go to Seattle. There was one choice. To book myself a ticket to Seattle and visit my kids for a week. I made the reservation. Traveling is difficult for me these days and recuperating after takes a while. Hey that's life and it's my decision. Unfortunately life is not that simple with friends telling me I jumped the gun, was impulsive shouldn't have booked it. Last time I was there I rented a car and drove fine. I drove a friends car with a stick a few weeks ago and that was okay. Besides, there's no one I dislike enough in Seattle to run over. Not yet anyway. I'd love to switch plans and have Chelsea and Myles come to NYC, but that's not likely.
Of course this whole mess just adds to my stress level. Came close to having a couple of outbursts in the kitchen, but held myself in check saying to myself, "Remember the Pizza". Not so long ago I had an outburst and threw a whole pizza against a wall. Of course the wall I threw it against was above the oven and most of the pie went behind the oven. After cleaning the wall I went to get the Handyman to help move the oven and gas lines to get the Pizza out. He knows I've some strange brain disease and has seen some of my antics. He asked with a smile how the pizza got behind the oven. I told him I was the giving pizza flying lessons so it could self deliver and I wouldn't have tip the delivery boy.
Have canned Starbucks for the moment and am writing from Castle Glick. Some generous people sent me Starbucks e-gift cards and after many months they ran out. I also haven't been enjoying the crowded, noisy McBucks atmosphere. It never really recovered from the renovation mess and I haven't been enjoying myself. As of today I still don't have subway service, so heading downtown is out. I declare myself an official McBucks orphan.
Yesterday, I received a text from Warrioress Diana Winoker. You might remember Diana was featured for the Alice Walton "Forbes" FTD Patient Series.
Diana has FTD and some other major health issues. Dynamic Diana gets up every day and gets out of the house and volunteers somewhere. She has every excuse in the world to sit at home everyday, but instead charges out to volunteer and help with different causes.
Diana was rear ended a couple of days ago and the accident actually had her back ( which was bad already) injured and black and blue. She had to do the hospital thing etc. Guess what, Diana the fighter was out yesterday volunteering for the Tampa Fisher House at James Haley Veterans Hospital. She sat patiently in pain waiting for the golfers to come in while also watching her Tampa Bay Bucs win.
People like Diana make life worth living. People with heart and substance.
Howard
Friday, November 2, 2012
Today I won
Sitting here at Starbucks by myself at 7:30am shows how much the city is dead. I have two friends who are small business owners. There businesses are both shut. One because his building is in the affected area, the other because her businesses server is down by the financial district which has no power. Schools are also closed keeping many home.
Just found out "God's Love We Deliver" is closed. Everyone in NYC is effected by Sandy, FTD'ers not excluded. GLWD are delivering to those in shelters from the storm. What a great organization. There doing the right thing. In society we need to sacrifice to help others that are also suffering. Even though I've become a lot less tolerant for bullshit, at the same time I'm much more compassionate towards those sick or in need.
Unfortunately for me, that's one weeks supply of food gone. A pit is in my stomach as my budget is getting stretched. I'm fine, but can't cut back much more. When I say budget, there is no actual budget. I can't figure out what is going on financially and never know where I'm really at. My friends tell me I'm okay, so I guess I am. I think :-)
Have barely left the house this week. The hurricane was some experience. I did go to a party with some friends the night after the hurricane. I had a good time at the party, but everything was going so fast. It wasn't in real life time, I was just having difficulty comprehending everything. I had a good time, but tired out quickly and was overwhelmed. I woke up in the middle of the night thinking of conversations at the party and was having such difficulty. I wasn't sure what I understood and what I didn't. Everything seemed jumbled. It's so easy for me to fall into sensory overload.
It seems like getting anything done these days is a major task. No matter how much I try, it seems that I can't focus. My attention span is incredibly short now. I get distracted by the simplest of things. I have a dry erase board I bought about 8 months ago. This was so I could prioritize critical things to do. I was going to ask the handyman to hang it. It's still in shrink wrap. I used to be very organized and able to multitask. "used to" is key. Things I "used to" be able to do and accomplish are gone forever. There is no magic pill or therapy to bring these life skills back. There gone. I just have to keep trying to compensate by finding other ways of doing things.
I've been wanting to do more since getting off the pill Namenda, but I still get really tired and need to lay down in the afternoons. It's not the same collapse exhaustion from the Namenda. Now, it's just a tiredness that I can only describe as my brain is exhausted.
It gets so tough trying to pick myself up and get going these days. Writing this blog used to so easy. Now, it's literally one sentence at a time. I feel I need to get one out every couple of days, which I have been. This is the last consistent thing I have going. I'll have nothing regimented or any routine at all if this slips. I haven't been in Starbucks in 2 days which isn't good. Right now I have to be so careful of not falling into the trap of never leaving my apartment. It would be so easy to do.
It's such a crazy life. I need to spend some time in public and get things like the blog accomplished so I stay a part of the human race. I have to fight to keep what little routine I have. What is routine and normal living of life is such a struggle. My brain now literally tries to keep me from doing anything. Just sit and vegetate. That is what my brain wants me to do all the time. Nothing. It's a daily battle and a test of wills.
Today I won. This blog is done.
Have a great weekend and remember to live each day like it's your last. Appreciate what you have. Life is precious and things can slip and change in a heartbeat.
Howard
Just found out "God's Love We Deliver" is closed. Everyone in NYC is effected by Sandy, FTD'ers not excluded. GLWD are delivering to those in shelters from the storm. What a great organization. There doing the right thing. In society we need to sacrifice to help others that are also suffering. Even though I've become a lot less tolerant for bullshit, at the same time I'm much more compassionate towards those sick or in need.
Unfortunately for me, that's one weeks supply of food gone. A pit is in my stomach as my budget is getting stretched. I'm fine, but can't cut back much more. When I say budget, there is no actual budget. I can't figure out what is going on financially and never know where I'm really at. My friends tell me I'm okay, so I guess I am. I think :-)
Have barely left the house this week. The hurricane was some experience. I did go to a party with some friends the night after the hurricane. I had a good time at the party, but everything was going so fast. It wasn't in real life time, I was just having difficulty comprehending everything. I had a good time, but tired out quickly and was overwhelmed. I woke up in the middle of the night thinking of conversations at the party and was having such difficulty. I wasn't sure what I understood and what I didn't. Everything seemed jumbled. It's so easy for me to fall into sensory overload.
It seems like getting anything done these days is a major task. No matter how much I try, it seems that I can't focus. My attention span is incredibly short now. I get distracted by the simplest of things. I have a dry erase board I bought about 8 months ago. This was so I could prioritize critical things to do. I was going to ask the handyman to hang it. It's still in shrink wrap. I used to be very organized and able to multitask. "used to" is key. Things I "used to" be able to do and accomplish are gone forever. There is no magic pill or therapy to bring these life skills back. There gone. I just have to keep trying to compensate by finding other ways of doing things.
I've been wanting to do more since getting off the pill Namenda, but I still get really tired and need to lay down in the afternoons. It's not the same collapse exhaustion from the Namenda. Now, it's just a tiredness that I can only describe as my brain is exhausted.
It gets so tough trying to pick myself up and get going these days. Writing this blog used to so easy. Now, it's literally one sentence at a time. I feel I need to get one out every couple of days, which I have been. This is the last consistent thing I have going. I'll have nothing regimented or any routine at all if this slips. I haven't been in Starbucks in 2 days which isn't good. Right now I have to be so careful of not falling into the trap of never leaving my apartment. It would be so easy to do.
It's such a crazy life. I need to spend some time in public and get things like the blog accomplished so I stay a part of the human race. I have to fight to keep what little routine I have. What is routine and normal living of life is such a struggle. My brain now literally tries to keep me from doing anything. Just sit and vegetate. That is what my brain wants me to do all the time. Nothing. It's a daily battle and a test of wills.
Today I won. This blog is done.
Have a great weekend and remember to live each day like it's your last. Appreciate what you have. Life is precious and things can slip and change in a heartbeat.
Howard