I recently celebrated my 65th birthday.

I realized that this was also the 5th anniversary of maintaining a good quality of life while having neurodegenerative disease.

They give people awards for five years without cancer remission or for five-year sobriety. So I thought I would give myself an award for having many bad things happen during the five-year period since “officially” becoming 100% disabled (according to the Social Security Administration) and nonetheless being able to maintain a good quality of life.

Obviously I had lots of help … nobody can survive dementia without a strong support system. For that I am very grateful.

I started out my period of retirement with the goals of maintaining quality of life for my family and myself and making a little difference in the world. I also wanted to stay relatively independent and minimize the number of times I would have to ask others to make large personal sacrifices to help me.

Don’t send me an email or comment on this entry to acknowledge that I did a good job — I know that. Do design programs and experiences for patients, clients, family members, friends, and anyone else with dementia to celebrate how hard they worked to try to stay independent and be as self-reliant and responsible as their medical condition would permit.

People with dementia can do much more and have a better life than most know. Help them learn this and celebrate their victories and achievements. Recognition that it is hard helps a lot. So does basic information that this is possible and some simple and inexpensive techniques for achieving as much independence as possible.

[I got the idea for this approach when my dermatology clinic congratulated me on the fifth anniversary of a skin cancer they had removed which did not re-occur.]

Celebrate people with dementia who “survive” and “thrive” during the time of their disease. Encouragement goes a LONG way.

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