This is a support blog for people that have been diagnosed with early stage FTD/dementia. This blog is dedicated to helping people help themselves as well as increase awareness for caregivers, friends, and the medical community. It will include finding groups, medical care, public assistance, having fun again, making new friends, dealing with old friends, family, depression, and isolation.
Dementia is a lifestyle change. You can live a happy, productive life with dementia.
The Annual AFTD Education Conference is in Salt Lake City, Utah on April 12, 2012.
Caregivers as well as patients have been invited to the conference. Last year was the first year patients were invited. We had 9 patients and it was a successful meeting. This would be a good place for us to get educated on FTD as well as have our voice heard as to the needs of patients. This year we're planning more activities for patients to get together. Since FTD is such a rare disease, this is an opportunity to see your not alone and learn different tecqniques of dealing with FTD. It's also an opportunity to get for caregivers and patients to get educated on the latest information on FTD.
I take no pills for FTD. There are no FDA approved meds for FTD. It's just hit and miss with drugs for other ailments used to try to address whatever symptoms the FTD'er is going through at the time. If your not seeing a psychiatrist or neurologist every month to stay on top of it, medications can become a problem in themselves. Besides FTD, I've had cancer and heart disease. All 3 of them in the last 2 years. The cancer was cut out and FTD, well FTD has a mind of it's own, pun intended. That leaves heart disease. A heart attack and 3 stents has me taking 6 pills a day. Over the last couple of months with my routine getting shot to hell, so has my daily pill regiment. The other day I took a serious look at pill container and it looked like a swiss cheese package. I stopped following the days listed and just open whatever day my fingers flip open of the 30 day container. Of course this leads to days when I'm not sure if I took them or not in the middle of the day. When that happens I don't take any more for fear of doubling up. Thinking about it, it got all screwed up because of a loading foul up. Some of the days have 7 pills instead of 6. Pilot error in loading the pills. I tried to see what I doubled up on, but couldn't figure out which pills are which. A few are the same size, but all the pills have symbols on both sides. I kept forgetting what, what while trying to check. Either that or I'm not sure if the extra pill is a generic with different symbols altogether. Okay, so what is better, taking an extra pill or missing a days worth? Then again I keep forgetting to take them anyway. I'm ready to get refills. It's that time of the month, but the container is only half full. Oh well, next? Have a nice weekend. Howard
Wrote a blog yesterday and went home totally exhausted. It was the first time I've written in a month and I never realized how much it took out of me. Besides falling asleep in the afternoon for a few hours, I also fell asleep at 8:30pm last night. When you have less of a brain, it's exhausting using the remaining cells left up there. Today is the second day in a row up I'm up and out of the house. Seems like my routine went to hell. The last month found me leaving my apartment briefly each day just to get a quick cup of take out coffee before heading home. Of course there were exceptions, but they were few and far between. Guess what, time to put all the crap aside and give myself a big kick in the ass and get myself together. I have the self determination and the discipline, but it is so hard to make it happen. Getting anything done is like a major feat for those with FTD. FTD steals our motivation and planning cable. Just arrived at Cafe Buunni and realized that I didn't have breakfast again. In fact, I haven't had breakfast in over a month. It used to be just cheerios every morning and then I went over to the Atkins diet. My cardiologist had me switch back but I still haven't been able to my morning routine back together. Last week I threw out milk that went bad because it wasn't used in my Cheerios. I'm supposed to put in my monthly order for heart medicines tomorrow, but noticed this morning I have about a three week supply. I guess breakfast isn't the only thing I'm forgetting. I usually have my pills after breakfast, but since I've been missing breakfast, the morning routines surrounding it are also suffering. It's a domino effect. So how did my routines get shot to hell? I'm not really sure. I did have it traced back and explained it to someone the other day, but it eludes me now. I know I've been sleeping better and that extra hour of sleep threw off my timing and delayed my shower, my tv news routine etc. I normally would leave the house by 6:30am. If I didn't leave the house by 7am, there was a good chance I wouldn't leave the house at all that day. It also makes it hard facing the day knowing that I continue to be aware that I'm unaware of what I'm saying and doing often. The other day when I was out getting coffee a jogger went by wearing a black spandex suit. As she passed me I turned and said, "nice ass". A day or so later I realized that, that was a bit inappropriate. Though no harm was done, incidents in public are common and they weigh me down. I bring this up because when you know your off it makes it much harder to get out the door of my apartment. I'm off and I know it. When I'm by myself my behavior is worse in public. When I'm with others, which is becoming very rare I'm more in control. Why? Sorry, no time to think it through right now. Now that I'm working on getting myself and my routine back together, my new arrival time at Cafe Buuni is 7:30am. I've made it there three days in a row now. I just need to get my pill taking, breakfast and all my other things back together. This is some way to live your life. I want to thank everyone who has written to me and researched Nursing Homes and Long Term Care in the NYC area. Your love and care is invaluable. I believe and am hoping the nursing home we visited was just a bad one and poor research done by the organizer of the trip. Hey, everyone makes mistakes. If this was a good one, bring on euthanasia :-) I've been to two LTC facilities now and at both I was asked if I was checking for my parents. Neither heard of FTD. I explained at both that I have FTD and statistic wise, this could be my home within a few months to a few years. I need to be responsible and have things organized. This is taking a toll on me visiting these facilities. "Memory Club" will be making these trips once a month and I just don't have the stomach to go by myself. I'm 55, if you don't think this is rough, think again. I started showing symptoms and getting sick because of FTD 8-9 years ago. Like everyone else with FTD, I don't feel there's anything wrong with me. I need to think about myself, life and actions to realize how my mind is off and deteriorating. Most who are around me short term also have no idea I'm sick. Most who think they get it, don't. Well, time to publish and get home and wait for my GLWD God's Love We Deliver meal delivery. I deeply appreciate there charity service. It's a lifesaver not having to make a decision about what to eat and just throwing one of the aluminum containers in the toaster oven. Still, there only so much spices can do to help these along. There's a lot to look forward to. I've got to get help planning out what, where and when I need to move. I'll get through it. I've a lot of good things coming up and plan to schedule many more with conference's etc. FTD, big deal. Still have plenty of life to live. Howard
Ah, nothing like the French Riviera in January. Warm weather, beautiful beaches littered with scantily bikinied or topless French woman. I can always have Nice in my mind as I sit here in 26 degree New York. It's been about a month since I've been to Cafe Buunni. The employee that I had a problem with quit. Good riddance. Haven't really left my apartment at all in a while. I'll get into that later, but I want to focus on my wonderful last week. Last Tuesday I met with the remaining members of my old support group, "Memory Club" and we took a tour of a Nursing Home in Riverdale. This is a posh area of NYC littered with cobblestone homes. In my quest to get my future set I need to visit facilities in my area so when the time comes, everything will be prepared. We entered the NH and it had a beautiful fish tank. We soon were escorted upstairs towards the recreation room. cruising the hallways the putrid smell of urine assaulted us. That smell hung in the air throughout our tour on the three floors we visited. As we walked we noticed the rooms had 3-4 beds per tiny room. You could have a room with 1-2 beds if you pay additionally. Mattresses were visibly lumpy. Master locks were on the closets and cable locks secured the bedside dresser. One bathroom for every 2 room and a communal shower. The Home wasn't run down, just very institutional. My friend Leo commented, "this is a place to die, not to live." I asked if any resident had FTD. No. The recreational room was sparse and cold. There were a few people my age with disabling illnesses. This was suppose to be one of the nicer Nursing Homes. Another Nursing Home that I enquired about in the area was having problems with patient abuse. This was a place people people go that have medicaid or medicare and are broke like me. After the 20 minute tour we gathered silently in the lobby. All of us were shaken up. This place was a nightmare. Our Memory Club director was shocked and stating how there was no way in hell she would let her parents anywhere near a place like that. Boris, a support group member who tries to mooch a meal no matter where we go was silent. You know it's bad. I left there in a state of shock. I'm trying to find a place where friends can check up on me from time to time. I would rather the Universe suck me up to wherever our next destination is than wind up in a place like that. Well, at least there's a shot I'll still get my disability. A friend of mine found a large NYC law firm to take on my Unum Long Term Disability case. This firm really was going to put in the resources and do whatever it took to help me get my disability reinstated. The firm was also going to do it Pro Bono. I had a long term disability plan which covered FTD while I was working. Problem was that I was misdiagnosed and by the time it was discovered I had FTD, the allotted time for appeal had passed. I've been fighting this technicality for years. Unum knows now that I had FTD while working, but they don't have to pay so they don't. That's why they are the No. 1 disability company in the world. At least now I had this law firm on my side. I knew it was a 50/50 shot, but there was hope and that was keeping me going.The firm worked very hard to find a legal path towards getting me my disability and I appreciate all there help. On Friday I was contacted and told the law firm exhausted all of the directions they were looking and there was no legal path for getting my disability reinstated. I've been fighting tooth and nail for years and now it was over. Gone with it was any hope of living a decent lifestyle. Gone was the thought of being able to visit my children a few times a year and help them financially. If I wanted to see them at all, it would be at the generosity of others or I'd have to be begging. Gone was the thought of possibly ever having a car or taking even a short vacation. Gone was thought of visiting Israel again. Hope is a funny thing. Though sick and slowly losing my mind, I never gave up that things could improve a bit. That was till now. Now, hope is officially gone. All of a sudden I'm picturing my only option in the future would be the urine laden hallways of the Riverdale Nursing Home. My reality was now settling in. My rent is $1,700 and my SSDI is $2,000. Because of some generous people I can stay another 6 months or so before moving. Then where, out of NYC I guess before I become a ward of the state. NYC is expensive and I don't live in an expensive apartment. I don't know where I'm going to go or what I can afford. the last year has had me lose medicaid, medicare pharmaceutical help, food stamps as well as other services. I keep getting cut back while I'm cutting back. There's nothing left to do but figure out how to move on. I spent the weekend in a panic state. I simply could not put things together on what to do. I've never felt such a loss of hopelessness in my life. Simply nothing to look forward to. Lately, I've been losing words and have been having more difficulty talking. This weekend I was shocked how much stress was affecting me and how quickly it could degrade. I spoke with my friends Alice and Howard. We talked about my friends having a conference call to figure out my options. I simply can't put it together and have no idea what to do. I don't know whether I'm coming or going. I have friends in my area and the FTD medical expertise here that's extremely limited in this country, but simply no money to stay. I've a few months to put together a plan and implement it. It's Monday and I'm back at Cafe Buunni and I will fight on. I knew they would be getting tougher and I'll just have to keep going and let the chips fall where they might. My choices and hopes in life are quickly becoming few and far between. Yet, I'm determined to get back on the blogging and filming "Howard's Brain" bandwagon. I've not been able to keep up with all the groups I belong to. Just can't handle as much anymore. In my push to further awareness I've reached a couple of milestones. This blog has crossed over 50,000 people viewing the pages in the year and half since it's inception. The FTD Patient Support Group I created has 51 members and is over a year old. I reached 55 years old a few weeks ago and though I've slowed a bit I'm still kicking. Things are rough and there going to get much rougher. Not every book has a happy ending. There were times over the last month where I've never felt so all alone and just wishing somehow the Universe will be merciful. We all live, we all die. What matters is how we live while we're here and I'm determined to keep going for as long as possible. Time to head back to the Riviera :-) Howard