Sunday, October 21, 2012

Life with FTD

When I was first diagnosed with FTD, the Alzheimer's Association gave me a grant to Riverstone's Memory Club which was a support group for those with early onset dementia. The staff and club members of Memory Club taught me how to live with Dementia and I'll be forever grateful. There's no way that I could've accomplished what I have without Memory Club's support and help.

Memory Club averaged 8-13 people and met twice weekly. I might have been the only one with FTD, but it became quickly apparent we all shared similar difficulties. I was very lucky to be in a support group for patients. They are very limited, compared to the amount of support groups and programs for caregivers. There are no support groups for just FTD patients. There is one  Online FTD Patient Only Support Group.

Mainly because of economics, the numbers of club members shrank to just 1-2. City and Government funds were slashed and with the economy people couldn't afford to go. I was lucky enough to have grants from both the Alzheimer's Assoc. and then AFTD - The Association for Frontotemporal Degeneration. In the beginning of the summer, I stopped attending Memory Club. It just wasn't the same without there being a large amount of people engaged in our discussions.

The last few weeks I've been having chest pains, so I've been panicking a bit more about getting  my "end of life" plans together in this lifetime. While at Memory Club I picked up a piece of paper and scribbled on a piece of paper that I leave all my earthly possessions to my children. Had two of the staff witness and sign it. Alas, it's done. I need to do a proper will, but this will do for the moment.

I spoke with the Director of Memory Club, Carmen Nunez about helping me with my long term planning and she was more than helpful. She already has arranged for  a tour of a "Memory Care Center" for Thursday. I fully expect to leave there in a state of shock. I'll probably be about 20-30 years younger than most people there. Such is the case for those with FTD. We also present special challenges for long term facilities because of our energy and behavioral issues. I recently heard from someone who was worried because her husband was to active so they had to medicate him. He was just trying to be helpful and wasn't destructive. Just a pain in the butt like me. Anyway, they needed to medicate him and the medications weren't working. They told the poor wife If they couldn't get her husband calmed down they would have to transfer him to a "secure mental facility". I feel so bad for her and her husband who has FTD and no clue to what's going on.  Of course that makes me think of my own future. Things like that are fairly common for those with FTD. Hopefully I won't be checking into one of those facilities for 20-30 years. Yes, things are a bit rough around the edges, but I'm nowhere near ready to give up my independence. Carmen will also be helping me with a living well etc.

As I said earlier I've been having chest pains for weeks. Considering I had a heart attack and stents put in 10 months ago this wasn't a good sign. One night the chest pains even woke me. Each night when I went to sleep I wasn't sure if I was going to wake up in the morning. My thoughts would jump to my children and some close friends. I knew I had to get some sort of will done. I'm 54 and have had 8-9 really bad years. Things have been continuously getting worse and there's no light at the end of my tunnel. Not every book has to have a cheerful ending. Wish mine would, but that's not the hand I've been dealt. Those are my thoughts for the future. Do I wish for death? No, but I'm hoping for a quick exit when I know longer can take care of myself. I love the work I'm doing on this blog, film, support groups and book but I need to have a bit more going in my personal life. I accept what is, is. But that doesn't mean I have be happy about needing to ask people and apply for grants, just so I can see my children who live in Seattle. I still don't know if I'll be seeing my children Christmas break. Then of course my mind goes into a cycle of hating Unum for getting off on a technicality from paying my disability. I'm not looking for pity, I'm just venting here in Starbucks where I'm probably on Double Secret Probation with the possibility of getting banned. It just feels like I'm not part of society any more. Sort of feels like i'm an outsider looking in.

There's no way to describe slowly losing your mind. To look normal, but to have your thought process corrupt and actions off is like slow torture. Things happen and people look at you with a, "What's the matter with you stare". It gets tiresome for even me to explain FTD to people all the time. Then after a major incident you dhole up in your apartment for days, just not want to go through it. There's no pain in losing your mind. If I wasn't self aware, I wouldn't even know I was sick. If I had a strict routine and didn't deviate at all, each day would flow into next. Time would stand still and I'd be one of the those FTD patients in a doctors office who at the end of the session the doc would think there was absolutely nothing wrong with me and the stressed out caregiver was sick patient. In fact, when I was in my cardiologists office he was explaining something simple to me and I told him I didn't understand. He said, "Of course you do". I just smiled. You can't fight "Wall Street" all the time. Later in the morning I had a test done downstairs and couldn't find my way back to his office. Luckily I ran into my Doc who pointed the way and explained how to get back. 10 minutes later I was still wandering the hallways.

My Cardiologist was concerned. He doesn't think my chest pain is heart related, but I'll have more tests done on Monday. Dr. Merab was very concerned that I'd gained around 46 pounds. It's not my fault the pizza is so good, cheap and a no brainer when I'm hungry and can't make a decision.  One quick call, "Small Pizza Well Done". "Right Boss, 6F" and it's at my door 25 minutes later. Don't even have to give my name or address. They know me and call me 6F because that's my apartment number.

In the past I've successfully lost weight on the Atkins diet. Starting Monday Atkins it is. Though I'm sort of tired of eating out of aluminum charity trays 7 days a week, I'm extremely grateful for the food and services that God's Love We Deliver comes with. The food is actually excellent and I'll pick it apart to keep my protein up.

My life with FTD is different. Dreams, hopes that we all have in life get shattered. You need to get accustomed to a whole new set of rules. I might bitch and moan a bit, but in my heart I know things could be a lot worse, my concern is that they will. Just hard to see any light at the end of the tunnel.



  1. Last time at the doctor, realised that she has an idea of me that doesn't have much of anything to do with me! Frustrating. Props to you for keeping up with your health care ( and figuring out the other important stuff) no matter how hard it is, Howard.

    1. Thank you Les. I appreciate it.


  2. Howard,
    I might not be diagnosed with what you have, my husband is. I do understand a some what you are going through. Weight gain, carbs craving, weight gain... all part of the disease. Proud of you for seeing you need to loose and are going to try and loose. It sounds like you are putting your house in order, which is good. Maybe that will help ease your stress. I know you stated you were going in for check up today, I hope you update everyone with how your health is. As a caregiver for my husband he doesn't realize like you the details of the disease. I know it's hard, but you are not giving up. That is good. Stay strong:O)


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