Location: south carolina
Just recently diagnosed with Kennedy's disease the DNA test that the Mayo clinic did showed 44 repeats. So was assured that it was not ALS but still worried cause I am having muscle atrophy on my right side of neck and left arm.
Just looks like I am losing muscle tone all over.
Still really scared that it could be ALS. I am 43 still able to walk climb/bound up stairs with no real problems.
I have tremors in left hand that started a good 10 years ago not noticeable at first but over the last 3-4 years easily noticeable the tremor when alot of times whole body can tremble depending on position.
I dont really get cramping but I can cramp any muscle easily like just straitening out my legs like stretching or yawning.
I do notice after golfing in the heat I get cramps all over the worst ones are the stomach muscle cramping but the next day I am fine.
I twitch all over it seems.
Well thought I would get some of this out just scared and the anxiety is getting to me was hoping to meet a few people on the forums.
Welcome to the forum. There is a vast amount of collective experience and wisdom among the participants, so let us know how we can help you.
The DNA test is very accurate and if you had it done at Mayo, I'm sure they knew what they were doing. So there is no reason to be concerned about ALS. Many of us have had the experience of a mistaken initial diagnosis of ALS, just because it is more common and has similar symptoms to Kennedy's disease/SBMA. Many doctors have heard of ALS and haven't heard of SBMA.
For a couple of good articles about what to expect at different ages, I suggest reading the ones referencing "Natural History of SBMA" which can be found here
Concerning the cramping, I have had good success fighting cramps by stretching gently and watching my diet carefully. I find that eating salty foods makes the cramps much worse almost immediately, but eating foods high in choline reduces the cramps for about a day afterwards. Check out my post "Foods High in Choline" in the Food and Nutrition section of the forum.
On the anxiety, I try to reduce it by focusing on what I can control vs. what I can't. I can't control that I have SBMA, but I can focus on things like diet and moderate exercise that make me feel better. If the anxiety is really getting to you, talk to your doctor, because there are some good medications for it.
Good luck and again, let us know how we can help you.This message has been edited. Last edited by: Dan B,
Location: south carolina
Thanks for the reply Dan. Finding this website has been a godsend just finding people to relate with has been so helpful.
I hope to talk to more of you from here.
Location: Pocatello, ID
Welcome to our fraternity Dorsey,
I am also 43 years old with KD. My repeats are 46 and I am envious that you can still bound upstairs...
My initial progression was a little faster than most and even after the KD confirmation, my neurologist did several other tests to make sure there was not something else going on with the KD. There was not.
What I have found over the past three years since diagnosis, is that anxiety and depression are common, especially at first, but it does continue to come back from time to time.
Also, that for me the symptoms seemed worst right before my diagnosis and just after. But, working with my neurologist and interacting with the KD veterans on this forum, I have been able to develop a routine of medication, exercise, and diet that have allowed me to live a relatively normal lifestyle (at least as normal as KD gets).
I echo Dan, good luck and let us know how we can help.
Location: south carolina
Yea still fortunate I can climb stairs with little problem but i get extremely winded when I do 4 flights or so and you would think i ran a mile or so.
I am showing some atrophy but still able to do pull ups not sure if that is a good thing to do plus able to still do 30 plus push ups at a time but I was all ways active in the gym until this diagnosis.
Now not sure what activities to do. I did play 18 holes of golf once a week so going to try to still do that.
Just scared of doing harm and fearful of what is down the road for me.
I pray for all of you and am grateful to have found this community.
I think my anxiety is getting the better of me since diagnosed I have lost 10 lbs and not eating well just do not feel hungry, but my original diagnosis was ALS until I went to the Mayo clinic and they did the DNA test that month of fearing ALS really took a toll on me.
Good luck guys and gals and hope to talk to more of you soon. Is anyone going to the the conference in Nov? I am really considering going.
Location: Pocatello, ID
Hi Dorsey, I can relate to the anxiety and fear that you are feeling. And the confusion about what you should or should not do. The neurologist that first diagnosed Kennedy's Disease told me to get moderate exercise, but not push myself. The concern is that if we with KD over do it and start breaking down muscle, it may not build back up. So, the rule that I follow is the 70% rule. Whatever I think I can do, I do 70% The problem I have is that I am not the best judge of what I can do. My physical therapist gently pushes me and I find that I can do more than I thought. I also frustrate my wife, because I insist on doing things, like carrying my daughter from her bed to the rocker for morning cuddle time. She constantly tells me, "you're not strong enough to do that and I'm afraid you're straining yourself." I argue that if I stop doing an activity in order to avoid straining my muscles, then whether from KD or by choice I have lost that ability. Yes, I am a bit stubborn.
As far as how I dealt with the anxiety and fear, I became very depressed. KD cost me my job. KD cost me a promising future in the safety industry. KD cost me most of the things I enjoyed about life. I prayed that the diagnosis was wrong, I prayed that it was ALS, so that I could die and get it over with.
I don't know if you are a spiritual person, but what got me through it was my faith and time. I had read in the New Testament that we should give thanks to God in all things. I would pray and tell God how angry I was. I would pray and tell God, how unfair this was. But, I started to think, really think of things I was thankful for. I first started giving thanks for the blessings that came. I was home with my family. I got to spend a lot of time with my kids. Because KD isn't ALS, I would be able to see my children grow up and get married (btw, my step-daughter is getting married November 19). In a few years when grandkids start coming, I can give them wheelchair rides. It took months for me to get over the anger, depression, and anxiety. And, from time to time, they still come back.
KD affects each one of us differently and while we share stories, and ideas, and support one another, none of us is living the same life. Some write, some run, some volunteer, some run, most of us are as active as we can be. It is not an easy process, but you will find your balance.
We are here for you to lean on, complain to, or whatever you need until you do find that balance.
Hi dorsey, glad to make your acquaintance. You're in great shape at 43, likely you have decades of "normal" activity ahead. 17 years after diagnosis, if I could send a message back to myself at initial diagnosis, it would be "relax, things will be just fine" At 57, I'm on permanent disability and there's challenges, but I'm still mobile, the cramping has subsided, and life is good. Further to the inevitable anxiety, I highly recommend "The Mindful Way Through Depression". Don't let the word "Depression" in the title put you off, this book contains valuable insights into how our mind works, and how to come to best come to terms with it. There is significant science to prove the validity of the process. Stay as physically active as is comfortable, and don't worry about it. Your challenge remains to enjoy this day and to live a good life.
Dorsey, thanks for joining us. We have a special group that makes themselves available to others who are in need of support.
Between the KDA website, my blog, the KDA chat room and this forum, you have excellent resources available to you.
I believe the key is what others have said above. Enjoy life! Don't let the weight of KD get you down. You have plenty of life left in those muscles and motor neurons of yours.
Just don't waste them by over-doing it. Exercise is important to keep those motor neurons firing within those healthy muscles. I am 64 and continue to exercise about seven hours a week and love it. I focus my exercises today to make certain that I do not cause additional damage.
Location: south carolina
Cam and Bruce,
Thank you for the welcome. You guys are great. This website is so helpful words can not even explain how finding this site has helped and hearing from others like myself has been a huge help of growing and understanding.
Cam I hope and pray for normal activity for decades and the same for all those afflicted.
I guess my only real problem now seems to be some dexterity in left hand the tremor is very noticeable the whole kind of arm all the way up to the shoulder trembles somewhat when drinking or eating and now some atrophy in the hand the thumb area is starting to show.
I guess my problem is besides sometimes staying focused on the present and that I am still very mobile cause I am sure most would see me and think normal guy moves fine but I find myself sometimes dwelling on the future.
And exercise wise how much is too much? I golfed 18 holes twice this week within 3 days of each other and was afraid to do it but these were charity events i committed to prior to finding out my diagnosis granted I rode a cart but not sure if I am doing damage or not.
I know right up to the diagnosis I still was in the gym lifting heavy to failure and wonder if that is why I am seeing some muscle tone loss in some areas or its just some normal progression I do know clothes do not fit like they use to.
Sorry rambling a bit. Grateful for the replies and would love to make the Saturday chats but i work on Saturdays. But If anyone wants to talk message me I would not mind talking to anyone via phone computer or whatever maybe we could ease each others mind or bring comfort with just some listening.
Dorsey, you should have not problems golfing for years to come.
Again, enjoy yourself and just listen to your body. Ask you doctor for a CPK blood analysis once a year. If it is going up significantly then you are probably overdoing it (muscle waste).
Generally speaking, we use the 70% rule for exercise. If you can push yourself to lift 100 pounds, then just lift 70 pounds. If you can do 10 arm curls, but the last couple are not great, then just do 7. The key is to not push yourself to muscle exhaustion.
Any time you want to write me via email, please do so. If I don't have the answer, I will try to find someone that does. My address is: firstname.lastname@example.org
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614