My husband's diagnosis of KD was just confirmed with the genetic testing. He originally was given the diagnosis of ALS. It may be strange to say, but after that ALS diagnosis getting the diagnosis of KD was good news. My husband didn't seek a medical advice until the symptoms were more severe. I have my own health issues and the idea of being my husband's primary caregiver with this progressive illness is overwhelming. My husband is 68 years old and is struggling to walk. I am 61 years old. Just look for support and advise as we head down this new path in our life journey.
Thank you for posting your thoughts, 2DanceAgain. The KDA website including this forum are excellent resources for those living with Kennedy's Disease.
I understand what you are saying. Quality of life is important for both of you.
I have a blog called Living with Kennedy's Disease. Over the last six years I have published almost 700 posts, most of them dealing with Kennedy's Disease, support systems, and mobility devices. I hope you can find something of interest there.
I am also 69 years old, but experienced onset in my late 20s. Ask any questions you might have and we'll try to answer them.
Hi 2dance, sorry I missed this post earlier. Way too much happening this year.
First off, understand that being diagnosed with any serious degenerative disease is a huge psychological blow for anyone, and may have traumatic side affects. The good news is that its not ALS. is thought to be slowly progressive and as there is no certified treatment, your doctor is free to prescribe any medications that his training and experience have shown to be successful to alleviate your husbands symptoms.
I was very lucky to not be diagnosed until I was 60 and had been taking many meds that were effective in controlling my various misdiagnosed symptoms. Some of them I have maintained and others not. Healthy living and a positive attitude are absolutely critical once you have absorbed the diagnostic shock. Kennedy's Disease is not an end of life condition, its more of a 'now that I know, how do I live better and appreciate more". Help your husband to use all of the tools he can accumulate; tell them they will help you too. A butler's cart to carrry stuff from counter to table, some decorative handrails for comfort (and ballet), a walker (when needed) with cup holder and newspaper pocket so he has an excuse to sit and read while others fret in the mall. Watch for a lift chair in the for sale ads, time to be treated with some creature comforts. Get a handicap Pass for the car. They are not a sign of Disability, but a 'I want you to shop here pass instead of using a drive through somewhere else'. Watch a few old movies and learn again that a cane can be used as a symbol of authority, assurance and 'that'll teach you to mess with experience" Your husband (and you) have done pretty good to get this far, time to take care of yourself the best way that you can. Don't listen to those who would have you just coping, thats treating the disease and not the man. Adapt and find new ways to enjoy the journey ... it ain't over til its over.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614