Hello, my name is Jen. I would first like to say that I am a nursing student and am continually shocked at the lack of information/knowledge about this disease. Even some of my class instructors have never heard of it. That is...well...discouraging. At any rate, to the point.

My grandfather was diagnosed with Kennedy's Disease between five and seven years ago. I have noticed a sharp decline in his physical health over the past few months and am wondering if this is typical? He recently had chairlifts installed in his home (he is now unable to climb stairs unaided) and has started walking, although stubbornly, with a cane. I have also noticed that he becomes dizzy and weakened performing the most elementary of tasks, during meal-times for example.

I love him to death and visit regularly. The whole family is more than supportive of him, he knows we care so much, but I can't help but notice that he doesn't seem happy as much anymore. He laughs and jokes about his new stairlifts, calling them his "magic chairs" and the like - but this seems more like an attempt to side step the disappointment of his loss of mobility. He's changed very much. He almost seems to be suffering from depression at times, and maybe it sounds selfish, but it aboslutely rips me up inside. I want so much to be a help to him.

He is still able to engage in many of the activities he has loved and practiced for years, which I believe may be his primary source of sanity. He still actively goes fishing and boating, still goes to the movies with my grandma and still enjoys travelling. What kind of comfort can I offer him once these simple pleasures are gone? How can I help him?

I want to do whatever possible to help my pap-pap, but I'm just not sure what to do. It seems as if all I can do is try to make him comfortable and just keep on reminding him how much he means to both myself and the family.

Any comments or suggestions would be greatly appreciated.

Thank you.

Jen, thank you for asking. Your grandfather is very fortunate to have you as a grandchild.

I can understand your concerns, but it sounds like your grandfather is doing well. This disease is progressive and doesn't effect every person the same way and at the same time. Keeping mobile is important and at some time your grandfather will probably need an electric wheelchair or scooter to get around.

Exercise, we call it smart-exercising, is also important. Neurologists now recommend that people with KD keep the motor-neurons firing and muscles working to keep muscle tone. Your grandfather's neurologist can help explain the important exercises and we also have an exercise guide for beginners on our website.

Balance is an issue as the leg, ankle, and feet muscles weaken. Exercises that include twisting in place and standing on one leg are helpful. Dizziness is not normally associated with KD and should be checked out by your doctor. It could be something else.

Mentally, KD takes its toll on people as the muscle groups weaken and basic movements become more difficult. Supporting a person through these times is important, but do not 'mother' or 'smother' them. Loss of independence is a difficult pill to swallow. All of us with KD try to do too much and often end up hurting ourselves (falling for example) or break something (reaching high above our head for dishes for example). Acceptance is often the most difficult aspect of KD. None of us want to give in to the disease. Frustration and anger are often side-effects of our fight to remain mobile, helpful, responsive, and remaining a 'man' in our own eyes.

One thing that is critically importantant is to be supportive of the primary 'care-giver'. They are often the unintentional benificiary of the person's anger and frustrations. We don't mean to be mean, but the disease often effects us mentally and emotionally as much as it does physically. Living with the condition is often more difficult for care-givers, family and friend than for the person with KD.

These are just some initial thoughts and I am certain others will also respond to your inquiry.