Kennedys Disease Community
How are you dealing with Kennedy's Disease in your life?

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10-19-2008, 11:43 AM
How are you dealing with Kennedy's Disease in your life?
DNA Testing for Kennedy's Disease

This is for Jim Michael and the others who have recently commented that their doctor or Medicare will not pay for DNA testing for KD. You need to contact your local MDA office and find out when and where the next MDA Clinic will be held. The MDA neurologist can have your tested for KD.

To locate your local office, go to and near the bottom of the page is a box for you to enter your zip code. It will give you the name and address of your nearest office. When you call, tell them what you believe you have and ask to register. The MDA has several good benefits including the clinic. Their doctors are very good and most know all about Kennedy's Disease.
11-08-2008, 08:55 AM
Hello all,

I've been diagnosed with KD for about... (counts on fingers, carry the 2) ...a whole week. I'm 37 and have known that "something was wrong with me" for several years. I've been seeing a Rheumatologist for arthritis trouble for about 2 years, and I have been incorrectly thinking of my progressive muscle weakness as "fatigue." It does manke you tired, I guess, but obviously an inaccurate description. At my last appointment 2 weeks ago, he saw me try to get up from the low step on the exam table. That is where my life changed.

Needless to say, after a short neuro exam, he looked pretty scared. Miraculously, I had an appointment with the Neuromuscular department at the university hospital within one week. That day, I had my diagnosis. I felt blessed; It could have been worse. As my Neurologist said, "I bet you've never been so happy to have gynecomastia in all your life! If not for your endocrine disease, you'd be diagnosed with ALS at age 37."

I've often said that it is what it is, regardless of what they eventually decide to call it. At least now I better understand what I need to do to take care of myself. All the intense cardio, weight lifting, karate and such I was doing to try to stay "healthy" had been hurting me all along. Who knew? The exercise section of this site was a sobering, yet extremely helpful, tool.

As far as my current limitations, I use a cane some of the time because of leg weakness, stairs are troublesome, shoulders, back, and neck are weak, I have some face droop, mild articulation troubles, and of course swallowing is sometimes an adventure. Overall, not too bad considering.

Prior to this diagnosis, I had trouble coping with well-intentioned friends trying to push me to exercise harder because it would make me feel better, for my own good so to speak. As much as I appreciated their concern, I just couldn't explain why sometimes "I just can't." That's usually the cop-out of a couch potato... or the confused reasoning of the newly disabled, it turns out. They're good friends, and obviously it makes sense to all of us at this point. I don't think they'll like my new exercise program--very unlikely to build huge muscles. I would like to see them try swallowing 10 times while biting their own tongues, though. Now that's a workout!

I'm content that I'll get to watch my 2 young girls grow up, I have a loving and very supportive wife, and I get a "second chance" to live the kind of life God would have me live. Although challenged, I am truly blessed.

That's my story, and I'm sticking to it. God bless all of you.

11-08-2008, 09:38 AM
Chris, welcome to the club!

What a great story. I admire your attitude (positive outlook) on life and being grateful for your family and other blessings in life. It takes many of us a few more years to come to peace with the disease and some never do.

Consider joining us on our Saturday morning chats (10:30 Eastern Time) on the first and third Saturday of each month. Next week we will have Dr. Fischbeck as our special guest.
11-08-2008, 12:36 PM
Welcome Chris,

You will find good support and information here Smiler My husband was diagnosed with KD 2 years ago, after experiencing progressive weakness over 10 years or more. It's been a relief to finally know what his problem is and, although there is no treatment (yet!), there is lots of really great research going on, and that means HOPE! Your positive attitude is terrific. I wish you and your family all the best in coming to terms with KD.
11-09-2008, 09:53 PM
Welcome Chris! Robbie 2 is will find good support here. My husband has KD and we just take things day by day. He also enjoys the chats on Saturdays. Your wife may also want to join in the women's chats on the second saturdays of the month. I'm pretty new to the chats and forums myself and have learned that we are not alone in this and neither are you! Your attitude is uplifting to us all!
11-10-2008, 03:52 PM
Pocatello Jim
Hi Chris, I just wanted to add my welcome. I too am fairly new to the world of KD and you will see that I have taken great advantage of the KDA and the wonderful people on it.

Pocatello Jim
11-11-2008, 07:34 AM
Thank you all for the warm welcome.

So far my experience is that, other than my Neurologist's office, this is the only place I've encountered where anyone has even heard of KD, much less understands it's insult on the body.

That's quite a statement, given that I'm a Physician Assistant and my co-workers are mostly doctors and other PAs (Dermatology). Their reactions seem to range from utter devastation from those who had already done their homework, to my favorite, the glassy-eyed stare of someone who has no idea what you're talking about.

I dislike being the center of attention, but I do appreciate the offers of assistance and the prayers on my behalf from my friends and acquaintances. My Dad reminds me to not be proud and decline offers for help--accept it graciously in the spirit it was given. That man's intelligence and wisdom has increased in direct proportion to my age past the teenage years. I sure hope that happens to me someday as well!

Thanks, again, for the kind words.

11-11-2008, 09:46 AM
Are you the Chris from Kansas that just joined the KDA? If so, I just sent you a welcome letter with a couple of attachments and your email host rejected it. The welcome was a reply to your email so I can only assume that it was sent by a valid email address. Please white-list "". Thanks

Error Message: "Technical details of permanent failure:
Google tried to deliver your message, but it was rejected by the recipient domain. We recommend contacting the other email provider for further information about the cause of this error. The error that the other server returned was: 550 550 5.1.1 - Invalid mailbox:"
11-11-2008, 08:27 PM
Yes, that was me. I'll take a look at the email settings--thanks!
11-12-2008, 08:39 PM
Chris, you have something in common with my husband...the reaction of the glassy eyed stare from people that have no idea what you're talking about when you tell them about KD. My husband refers to it as the "deer in the headlights" look!

I like what you said your dad told you about accepting help and I agree, "accept it graciously in the spirit it was given". What a beautiful statement! I will always remember that when someone offers assistance to us. I know it has been difficult for my husband to accept help when it seems like a short time ago, he was able to perform routine tasks on his own. Thank you both for the inspiring thought!
12-02-2008, 05:36 PM
KDA Adminstrator
Wow! What a good topic Bruce. I should visit these forums more than I do. After all I set them up for all of us LOL. I will try to do so in the future. Thank you Bruce for taking the reins of these forums and providing the feedback to everyone, it is greatly appreciated. Reading these posts is theraputic and inspirational. It makes me feel good to know that taking the steps with my wife & Patrick Griffin to start the KDA have helped so many. So many times with this disease I get that feeling of no self worth and feel like giving up and wish I had the energy to do more and something always comes along to change that train of though. Everyday I get the feeling that God is messing with me like it is some long ongoing practical joke. I can be working with something with my hands on the counter top and I then drop it only for it to roll all the way across the room and then find its resting place in the most hard to reach spot in the room. This does not happen just occasionally it seems that way all the time. So I find myself having to get down on my hands and knees and sit on the floor to get to where the object is and then after I get it I have to crawl over to somewhere I can get some sort of aid to try to help myself back up. We have 3 horses, 2 dogs and 5 cats and Susanne works long hours so I do my best to keep things going at home on the 5 acres we have. There is always something breaking or the constant maintenance on the property and It is starting to win. Maybe time for a re-think. I get very frustrated with KD but I just keep chugging along each day. I hope to meet more of my fellow KDers at our next conference. Until then I will try to check these forum more often.
12-02-2008, 05:54 PM
Terry, I decided some time back to make this specific topic more of a blog by continuing with a variety of related subjects for easier reading and more continuity. So far it seems to have worked and spurred more topics.

I am still amazed you handle all the responsibilities that you have on the farm/stables. Each one provides its own challenge, but it also keeps you off the street at nights.
12-08-2008, 10:31 AM
New Exercise Program Has Really Helped

Two weeks ago a Physical Therapist (PT) came out to the house to evaluate my current capabilities and exercise program. Fortunately, the lady was familiar with Kennedy's Disease so I didn't have to provide a lot of background. She was very impressed with my current exercise program (Smart Exercise Guide), but had several improvements/modifications that I have been using the last two weeks and they have really helped improve my strength and balance.

I become excited when something comes along that can significantly make a difference and these additions have done just that.

I found that I have compensated for many of my inabilities ... in other words taken the easy road. The PT has challenged me to not always take the easy way and focus on not just maintaining, but also improving my capabilities and self confidence.

One of the big differences I have seen is the ability to stand up without having to immediately grab a hold of something to maintain my balance. Another is the new-found confidence in standing for longer periods of time using my own muscles, or even turning, without having to lean on a walker or counter top or wall.

One of the "secrets" imparted to me is that when I exercise I need to improve my visualization of the actual working of the muscles and use the brain to contract/tighten the muscles I want to have worked. Initially I could not feel anything, but the more I focus the better I can feel the muscles contracting/tightening.

Another opportunity was immediately pointed out. Since I have lost a lot of confidence when standing, I tend to not stand totally erect any more. I have now been asked to stand near a wall, in case I need support, and without holding on to anything stand at attention with my butt and stomach pulled in, chest out, and chin up. Once comfortable with the position, I can close my eyes and continue to focus on just standing straight and strong. It is amazing all of the muscles that I use (sense) with this exercise. Then, I open the eyes and begin to move/sway my hips left and right to put weight on one side of the body and then the other. It is amazing how many muscles you work with such a simple exercise.

As you can tell, I am pumped! After I perfect the revised/improved exercise program, I plan on updating the Smart Exercise Guide so others can experience the same benefits. Wish me luck!

You can see some examples of the exercises by following this link: New Exercises

This message has been edited. Last edited by: Bruce,
12-20-2008, 05:06 PM
KDA Adminstrator
We are continuiing to stay positive and look at all the things we have to be grateful for. Its a struggle at times, no doubt. But it could be a lot worse.

Whenever I get the chance, I educate others (family, friends, DOCTORS!) about Kennedy's Disease. If we don't who will? Its amazing how many will listen as I drone on about muscle waisting, adult onset, no cure/treatment (yet!), etc.

Happy Holidays to you all!
Susanne Waite (I think I better get my own logon here or I might be in trouble with Terry hijacking his Avatar/Login!)
12-21-2008, 10:24 AM
Holidays Bring Hope

I feel that these holidays are a special time because normally families gather together in the spirit of love. It is a time for sharing and caring. During this season I find that 'hope' also springs forth. You see random acts of kindness that bring joy to your heart or receive a card or phone call from someone that brings back wonderful memories.

For me, it is difficult to feel down or feel sorry for myself during this time of year. Perhaps this feeling is brought on by my childhood memories of Christmas. Or, it could be the result of memories of the joy that my children expressed (when they were still children) during this time of year. Whatever the reason, it is always a good season for me and it is made even more special when you can be with family.

I would be interested in your stories of how the holiday season impacts you.

From our house to yours, we wish you and yours a safe, healthy and happy holiday season and an even better 2009.