I´m very sad to tell that my father Sören Mannheimer left us this morning due to, and after, a twenty-five year long battle with Kd.
He died very peacefully in his sleep with his wife at his side.
He was a very brave and strong man and he invented a lot off special solutions thru the years to help him cope in everyday life.
We live in Sweden, and here Kd is very unknown.
In his active days he worked as a lawyer and as a politician and the years just after his diagnosis and before retirement as a director of a bank. He died at the age of 83 and we all gonna miss him so much, but always keep him in our thoughts and hearts. I hope my english is possible to read, Im much better in Swedish.
Anna

Anna, thank you for sharing. Your English expressed well your loving thoughts of your father.

Thoughts and prayers for your father and your entire family.

Anna, I'm sorry for your loss. Thank you for sharing.

Your father did well to live to 83 with Kennedy's disease. Some people with KD live a full life which is why KD is usually clinically described as not having a major impact on life span and yet it appears many of us with KD die younger than statistical averages for people in similar circumstances without KD.

I believe we might all learn from people such as your father who beat the odds. Do you have any insight into his diet, exercise and other lifestyle choices that you believe helped sustain him?

Thank you Bruce and ToddAllen!
I really don't know what made my father keep on going for so long.And I´m sorry that I don't have a distinct answer.
He didn´t have any special diet but liked food and ate most of everything.
But not to much of anything!
He drank a glass of read wine every day and, as long as he could, sat on his training bike for 15 minutes everyday while he watched the news.
I think he also was a very careful and proactive person in that sense that he was prepared for what was coming.
He got in his wheelchair in time and the last year he had a lift installed in his bedroom for every move.
In Sweden they don't give Kd patients the pneumonia shot, just the flu shot, but he always had a bottle of antiseptics in the hall for visitors to clean their hands with. And fortunately he didn't get sick during all this years.
All in all I think he made his life as good as he could and took every challenge very stoical, it was just his last 6 month that was a bit to hard on him and on us
I think he also, other than with Kd, had some genetic luck with good health. He had a strong immune system a low blood pressure a very nice wife, a cute dog, and a sometimes nice daughter

quote:

He had a strong immune system a low blood pressure a very nice wife, a cute dog, and a sometimes nice daughter

A fortunate man, that is a great combination.

Thank-you Anna for allowing us to share in your loss. Our end days are often neglected when routine makes everyday pass so quickly, but they arrive none the less. I hope you, his very nice wife, and cute dog may have the time during this difficult transition to truly care for yourselves as I am sure he would have wanted.