Read a newspaper article about Julie Krueger, an FTD patient a few days ago in a Wisconsin publication Daily Herald - I'm Aware that I'm Unaware. The article really impressed me and gave me more insight into my life, by reading about hers with FTD. Julie is a truly amazing woman whom I'm honored to have as a friend and also has an FTD Blog Julies Journey. There's a bunch of us FTD'ers that are in contact with each other who work to continue on with a life of purpose, happiness and productivity. We shun the death sentence given by FTD and keep living life while knowing we're putting our families and friends through hell as our brains liquefy and we slowly lose our minds and lives.
Each FTD'er is on there own journey. Our symptoms are similar but different as our lives and support for each other intersect. Julie and I both became symptomatic in our mid-40's with me bing about 8 years older. Julie got diagnosed quickly and I went through 6+ years of medical hell being misdiagnosed. Amazing what 8 years can do in the awareness of a disease. FTD has gone through 3 name changes since I first heard of it being called Pick's disease. More doctors are now aware and hopefully cases like mine will become rarer as time goes on.
I was amazed to read about team Krueger. "The team of doctors and caregivers involved that of a football team - a team in which Krueger considers herself the quarterback". Team Krueger has a neurologist, a psychiatrist, a neuropsychologist and a counselor. Julie also has a loving boyfriend and a local family. From the beginning she used her organizational skills and has her "end of life" plans neatly mapped out. Her will, life insurance, long term care and all the other things one needs to get done, she proudly got done. She is now moving forward the best she can knowing things are set in motion to as FTD progresses.
By contrast, there are those like me out there that were and are inadvertently trashed by the medical community because of lack of knowledge of FTD. We're lost and have lost much. If FTD was caught in the beginning my life would be a bit different. I wouldn't have lost my soulmate Tamara, who I lost after 6 years of caregiver hell. I'd have my Unum long tern disability which would make things financially easier and help me have funds to plan long term care. I'd be seeing my kids who I miss dearly and help contribute to there lives. I'd have a will in place, medical proxy with my wishes known and all the rest that comes with "end of life" planning. I do have friends that are trying to help. A friend of mine has an accounting firm and set me up to get my will done. After months of phone and email tag, I finally got through to the person. We spent 45 minutes to an hour on the phone. I got off the phone having no idea what he needed or what I was suppose to do. I sent him an email requesting just a short list of what he needs. Never heard back. I can't tell you how frustrating and depressing it is needing everything in my life micromanaged. Over a year ago I bought one of those online "Will" programs and couldn't get through it. I've asked a couple of people to help me, but it never happened. It's now in the mess of paperwork strewn throughout my apartment. I'm now planning on finding a local cheap lawyer to draft a basic cheap will leaving everything to my children.
Instead I have absolutely nothing set up. It's been over 2 years since I've been diagnosed, but I've been unsuccessful in accomplishing anything in regards to my future or own well being. I've been successful and organized all of my life and now I can't get anything done. I have good friends who've been trying but it's not happening. One of the problems is I look and sound to damn normal. People think I can do what I used to do with prompting, but it's not happening. My apartment has become a total wreck. My kitchen is a mess and a cockroach the size of the Empire State Building has moved in. Hopefully he's single like me and didn't bring his family. I used to have all my papers neatly filed. Now papers are everywhere. Closets cluttered with God knows what. I simply can't keep up no matter how much I try or plan. My hygiene is slipping but manageable. I don't want to get into it accept to say I received a letter from a friend who was reading one of my older posts about me being concerned about me brushing my teeth once a day now instead of twice. I remember that period and I figured since I was aware it was happening I would snap back to twice a day. No problem right. Wrong, it's once a day and sometimes I miss that. My wash which used to be done every Saturday with me cleaning the apartment. This was pushed to every other week to help me save money. In NYC we pay for the wash machines in the basement. Well I think I'm doing it once every 3-4 weeks now and the apartment is out of control.
As I've written before, social services have been squeezing me out and I've given up with the appeals process that I continually lose etc. Things are getting tighter and tighter. I've compensated over the last year by becoming extremely frugal and not doing my best not to spend money unnecessarily. Last year the sun, moon and stars didn't line up and I found myself eating cheerios and water for 6+ days. Was to embarrassed to tell anyone at the time, but I decided to cut back on many facets of my life including go downtown etc. Pretty much my life consists now of going to Starbucks 7 days a week and working my FTD stuff. I'm not destitute by any means, I just live within my means by any means possible.
I'm struggling but have accepted that I need outside help. People have talked to me about getting an advocate. Right now, I need to start getting help. I can't let things slip anymore.
A few weeks ago my Unum disability case ended and with it came the reality that, that was the best hope for me having any financial independence. I had a few other things going like a book etc, but It's just so difficult getting anything done. As I wrote last week I unfortunately see myself heading toward's some really rough times with my health and finances declining. I'm on the edge and slipping and it's so scary. It's really hard being alone with all this.
My life long friend and Power of Attorney Marc Turkel set up a power of attorney trust account for people to donate money to help me. It should be up and running on this blog in a few day.
The last few days I've been distraught. The thought that this is how I'm ending my life as beggar has me on the edge of tears as I type away here at Starbucks. I've never felt so hopeless. The thought of not being able to somehow be master of my own fate and work my way out of this mess is incredibly stressful. Two nights ago I went out to the local pub and got drunk on beer and tequila. I was sort of sitting outside by myself and lost it. Crying, cursing and at one point slammed my fist on the table. I forgot I was filming and the camera went flying. At least it didn't break. I wrote what was going on to some friends and in my FTD Patient Support Group and received some excellent feedback. People made me aware that I'm not a beggar and It's okay to accept charity. I still feel really horrible of having to be dependent on society, but things are coming apart at the seams and I need help.
I'm struggling and putting all my energy toward this blog, the groups, the film and the book if I can. I also refuse to shift my priorities and will keep my FTD work first and foremost.
My friend and power of attorney sent me a beautiful email which I read about 10 times. It had the beautiful words and seemed really touching even though I just can't put it together. Here is his letter sent to me a couple of days ago as I've been going through a really rough time.
There's the good and there's the bad and then there's life absent good or bad. The sun just shines, the waves just roll in, there's a storm an earthquake and a flood. Is there anything wrong with any of it? No, it just is. You are. You draw breathe and live and the context of any life is what one says about it. I say there's nothing wrong and it is what it is.
Have been off Namenda for I think 4 days now and don't notice any difference. Still tired during the day and I really can't tell if it's any less yet. Will keep everyone appraised.
Some people ask me how I edit this. Usually line by line as I go. Right now It's 10:20am I'm tired so I stopped edited about 3/4 through and am just going to publish. This is what I usually do and come back later to check for typos.
Waiting here at home for GLWD. It's some life we live.