Thursday, November 3, 2011
FTD - I'm in the War
I'm consistently dealing better managing the revolving door of symptoms of life with FTD.
Right now I'm taking FTD head on with no caregiver and no drugs (except Namenda) and I'm kicking ass. I am clear, lucid and can articulate well.
The symptoms are there and not going anywhere, I'm just dealing with them differently. For months I wrote about how I would come home from Starbucks at 9:30 -10am exhausted and quiet often be in bed till the next morning. I was exhausted from monitoring my behavior trying to keep my language, sexual jokes and innuendoes etc. at a minimum.
Sometimes the home health aide would be shocked that I was so exhausted I couldn't answer any question besides what my name is. I would just stand there confused and disoriented and she would tell me to go lay down.
My neurologist and friends told me not to worry about my language, behavior etc. I was told to stop my monitoring and over thinking because I was burning myself out. In my desire to return to the human race I discounted there advice. A few weeks ago my Starbucks buddies and staff noticed I was staying later and later or returning in the afternoons. Friends also noticed that my behavioral/language difficulties were greatly reduced.
Now it seems I'm getting close to having most of my all energy back. I still don't sleep more than 3-4 hours a night.
I just put it together a few days ago. All the monitoring of my actions and language that was burning me out was finally paying off dividends. I integrated into my life and have successfully minimized these symptoms and now I'm not needing the constant monitoring of myself. Of course I slip, but big deal.
Of course the hours of monitoring, meditation, resting, and mind strengthening exercises are helping.
Some reports say FTD behaviors have a physical cause and cannot be controlled or minimized by the individual.
The more I find out about FTD the more I realize how much is not known. The Frontal and Temporal lobes cover half the brain.
I frequently get contact by people whose loved one display new musical talents as there language skills decline. One woman is now mute, but started singing beautifully. Another plays organ. The list goes on. No one understands this. FTD is still an enigma.
"It is what it is" and I'm doing better. Maybe it's just a stage of FTD, but I'm doing better and I will continue to fight to improve every day.
Does this mean I'm ready to join society being a fully functioning person, I think not. There are so many other symptoms and issues I'm dealing with it is mind boggling. Some of the most difficult and prevalent are:
1. Not being able to put facts together and make a rational decision. This also causes my judgement to be flawed.
2. Not being able to follow conversations and phasing out in the middle of conversations.
3. Not realizing when circumstances are changing around me.
4. Not knowing exactly what a person is meaning or intending to say while there talking to me.
5. Saying things I regret later.
6. Constantly second-guessing myself.
7. Being aware that I'm unaware of what I'm saying and the hurt that's being done.
8. Short term memory loss.
9. Not being able to retain what I read and other cognitive issues.
I intended to write just a couple of symptoms but the list quickly grew. I stopped at 9.
My pet project right now is minimize my non-stop chatting or incessant talking. I get into these modes where I continually ramble on without stopping. It's usually about myself and I don't let anyone talk or pay attention to anyone else. There are a many issues involved in this and it is complicated. I will get back to you on my progress. I was going to say progress or lack of progress, but to me the efforts involved in managing the symptoms of FTD are a triumph in itself.
Everyone knows how my heart goes out to caregivers, friends and loved ones of people afflicted with FTD. You go through absolute hell.
Those suffering with FTD are in a war 24 hours a day. Whether there isolated in a bedroom at home watching TV (I did that for 6 years), in a nursing home not really knowing what's happening or going on, or battling every day out in society like I'm doing, we are in a war.
I'm going to use the analogy of watching the Vietnam war on TV. We still see the old clips and say how horrible that was. Nobody though has any idea of what that soldier on the ground was going through. That's what it's like living with FTD. You can't explain it or understand it unless your going through it.
Living life with FTD is fighting a horrible war that never ends and everyone else is watching it on TV.
Living with FTD is nothing short of war.
FTD'er who is living life with happiness and purpose