Monday, November 5, 2012

Long time for Alzheimer's blog.

Hello blog readers especially all of you in the UK that seem to be faithful readers! I realize I have not blogged since March I believe, much too long, I would like to say I have been busy, and I have, but that is not an excuse. I expect you will hear from my dear friend Joe Potocny shortly after I post this also. He loves to jump on after I post and it is always good to see him.
I know everybody just wants to know, "Is Alzheimer's a mental illness?" (see prevous entries over the years)
As far as Alzheimer's, not a whole hell of a lot to report in the trenches. You are all aware or should be of the concept of biomarkers which is the rage in the Alzheimer's world. Basically blood tests, spinal tap cerebrospinal fluid tests, neuroimaging MRI's PET scans etc, looking at ways to identify Alzheimer's months and years before it ever clincally shows up on a day to day basis. The idea is if we identify it really early before it is even there, we can develop better treatments, and even preventative treatments. The giant Alzheimer's Assosciation continues to clip along, non-profit that it is. One noble thing they are doing is trying to get the "experts" to come together, to work on this stuff. I give them much credit. Remember I tought you I think, that the first order of bussiness for any non-profit is to stay in bussiness. Second, secretly every expert it seems want to be the first to win the "space race' that is discover the cure for Alzheimer's. So the mission to make this not competitive and make it truly more collaborative is a noble thing. I know I am cynical and I know every expert and every Alzheimer's associaiton person has been "touched" by Alzhiemer's be it a grandmother, in-law, aging parent, or spouse. Everyone has been touched it seems, that's how prevalent it is.
We tend to gauge people on how close a relation that relative was, are they still living, etc.
Example I know when I show up at the local Alzheimer's walk, I feel more removed and left out, my pain is not as poignant objectively as some family member currently living throught it.
Nobody seems to give a crap. I mean my mother has been dead for 25 years now from Alzheimer's, so get over it right? I seem to have less creidbility as a survivor as the years go on.  Perhaps I have gotten over it, the fact that I am not on the inner circle anymore, put some daylight between it and me. Perhaps when you are over it, you still feel bad.
So anyways the biomarker stuff is not cmoing to you corner primary care any time soon. If this ObamaCare stuff continues you can and will see a lot less attention to more meds and treatments being developed. My opinion, and prediction. Many in the know would vainly and sarcastically refute that, but I am sure it is true. God help us tommorrow at the election.
I am seriously considering changing up the focus of this blog. There are so many places you can go to find out the latest fads and Alzheimer's news. I know you get things here that others don't know or say or are afraid to say. You have heard all the stories, you know the course, you will survive. If you are going through it, someday you will be like me 25 years later, still feeling bad but wondering why you don't fit in at an Alzheimer's walk, or if you are like me, and lost somone to AD a kong time ago, you know EXACTLY what I am talking about.
Good luck voting, don't be ashamed or embarrassed anymore to vote for the right guy espeically if you live in a geographic region or demogrphic that exepcts you to vote a certain way.
Lets wage a war on political correctness and be proud of who we are again! Vote from your heart not from hate.

Friday, March 9, 2012

25 years ago my mother died from Alzheimer's disease.

From my sister Madeline the other day on facebook_

"Today is March 6th. 25 years ago today, my mother left this earth and moved into heaven. She was 69 (5 days short of her 70th birthday) and I was 29. For almost the last 10 years of her life-she did not know who her children were. She lived in a very good nursing home with wonderful care. When she was diagnosed with Alzheimers Disease in 1980-no one had heard of it except my physician brothers and sister in law who was a medical geneticist. You learn how cruel life really can be when your parent asks you who you are. I tried to do everything I could to fight against Alzheimers-(became the youngest board member of the Alzehimer's Association, gave trainings and talks- everything physically possible to annihilate this killer disease. Now those words are a part of the American fabric.
I only found out something so special about her last year. When I was a teenager, I spent a total of two years on the adolescent medical floor at St Vincent Hospital in Erie. (My parents had met there when my father was an intern and my mother worked there and volunteered for decades there.) Last year, while perusing through her scrapbooks-I found that she had been the president of the Hospital Guild when they raised funds to open an adolescent unit. She never once mentioned that to me. Nor was it she that told me that she used to play the organ at the Warner theater in Erie to go along with the films in the 1930’s. So many things I can never ask her about.
Everyone felt her kindness and caring and how loved her life so much-as a wife,mother, daughter,musician, community volunteer and so many other roles. My greatest sadness in life was not to have parents around as an adult-how lucky people are that could have this kind of relationship-truly a gift. My luckiest gift was to have had the parents I did even though it was for a short time. Luckily, my parents named me after my sweet mother-We were the two Madges. God bless Madeline Mary Mentz Sivak-March 11, 1917-March 6, 1987.

Madeline Sivak "It was so heartwrenching painful to try to explain to people what was wrong with my mother-as if dealing with it at 20 wasnt hard enough-the insensitivty of most people was what now I consider amzaing seeing how AD is now-"TRENDY DISEASE". obviously we might have what you call bitter feelings-I just don't think we can ever get rid of them it was such a heartwrenching decade."



How I'm feeling about it all lately.....


"a quarter of a century of broken heartedness now and a piece of yourself and your very fabric, identity and self-worth ripped from you slowly and sadistically unrelenting-thats what AD in a parent does to you as a kid, (despite all the hope and positve spin BS on the disease), and then you cover the wound that never really heals and limp through life- Thats Alzheimers disease, and nobody really cares becouse it is too icky to talk about, until it happens to them. Then they want to know how you got through it, so you say "I tried to tell you, don't you see? This is why I am like I am" I so wish I had something to offer them. I promise Alzheimer's in a family member does not make you stronger- it weakens and chronically wounds you. Sorry"

Talking about the book with the Lake Superior wind....... a calm day