I wonder if anyone has any experience of ageing with Kennedy. My father is now 81 and I think its hard do know what new difficulties are from ageing and what is the disease. I´m also concerned about his loss of memory. Living for several years with Kennedy has made him very caustious how do to things,he knows exactly how to drive his mobile chair, how to manage the toilet and so on. Now he cant always remember how he used to do it.So if anyone has any experience please let me know ( sorry for my english, Im much better in swedish )

Hi Anna, Knowing what is the result of KD as opposed to 'normal' ageing is difficult. My 95 year old mother-in-law still lives on her own, bakes great cookies and goes for a walk on her own daily but can't remember how her remote works to turn on the TV (she also gets upset when the printer on her computer refuses to print on recycled paper she has kept). As with every other aspect of KD, when things are becoming stressful for caregivers, don't try to analysis it, just get help. You might get some tips from the KD UK people, I'll post their link, and the KDRA facebook page has many older members, carriers and care-givers as well. Care well for yourself, your father can only benefit from being surrounded by well rested support.
https://www.facebook.com/Kenne...6650717398/timeline/

Anna, thanks for posting your question. 81 and still functioning is a blessing.

Aging, something all of us experience, is always a challenge for those of us with Kennedy's Disease. Since KD is a lower motor neuron condition, normally our mental faculties are not impaired.

And, even though we have KD, we can still have other health issues including dementia. But, I would guess that more often forgetfulness and other similar symptoms might just be part of the aging process because we do not challenge ourselves or stimulate mental activities like we did earlier in life.

Discuss these symptoms with your father's neurologist first. He should be able to relate what symptoms could be KD related and which ones might be caused by something else.

Again, thanks for contacting the KDA. We hope some of the answers will be helpful.

Thank you very much Paul and Bruce for your suggestions. And for this site. KDA has been very informative and helpful.

Sleep. or lack of quality sleep is perhaps the greatest contributor to cognitive decline.but, some research show a link to kd, mitochondrial dysfunction and disrupted autophagy.
http://link.springer.com/artic...07/s00415-009-5212-5