My 24 year old brother was talking to me about KD tonight. He is having very strong muscle cramps and is concerned this may be an early sign that he has the disease also. His throat and jaw cramp when he yawns. His shoulder cramps up when he lifts his arm. His bicep cramps when he flexes. His hands cramp when he makes a fist and yesterday, while laughing his ribs cramped and hurt so bad he could hardly breathe. I have already tested positive at 39. What advice would you all give to him?

Oh, and his eyes twitch.

Thanks for any advice you can give.

Jim

I'd give him the same advice as I gave my younger brother. There is not any treatment for the problem. Official diagnosis can result in denial of life insurance and other medical coverage. Unless you have to know, I would not get diagnosed at this point.

I've had a similar discussion with my neurologist and the one thing they like to verify is that you don't have something more serious than KD. I'm 31 and was 25 or so when I got diagnosed and I haven't had any issue getting life insurance or with any medical claims. KD doesn't generally affect lifespan and my only big claim is occasional blood work.

Well Brad, good questions. Unfortunatey there are no definate answers. I had hand tremors start in my later teens. I was a Telephone installation and repair technician. I was 20 when I started the job but, my tremors didn't keep me from working with the fine wiring and components. I lost my dexterity at about 41. Unfortunately I had no idea I had KD issues, until I developed a limp at 39. That is when it started to affect my work. I ignored or put off all the other ocassional weakness issues and cramping as just poor fitness, etc.

First off, I wouldn't make any life altering decisions until you know for sure or even after that, it is up for debate. Second as you are aware, the progression is totally different for everyone (Mine is the fastest, that I have discovered. From limp at 39, to basically bed ridden at 42 and with major breathing trouble. The doc's say not ALS). Then there are others in their 50's still running marathons. I don't think anyone can rightfully give you definate yes and no answers. Third it might be a good idea to have your insurances(Disabillity, life, health, etc.) in place and the probationary periods for those insurances has expired, before you seek any medical treatment and/or diganossis for any your symptoms. Otherwise you could disqualify yourself from coverage.

Unfortunately you have some tough decissons to make and ultimately your the only one that can and should make those decissions, with as much info as you can gather. You have one advantage I didn't and that is the insurance issues. You need the financial backing, just in case you do have KD and might become physically unable to earn an income at some point.
I'm sure these aren't the answers your looking for but, I felt I should mention my thoughts.

Good luck buddy, we all know what you are going through!!

Darwyn

There are some great comments above. I agree, there is no perfect answer. Every decision has some kind of risk. If you must know for sure, have the DNA blood test. And, as mentioned, even if you have KD, onset and progression for each person is different.

Personally, I feel that KD should not be a determining factor in deciding your direction or purpose in life. You are young, and even if you have KD, you have many good years in front of you before it becomes a major issue.

That being said, I also feel that you should prepare for the future by making certain you have proper health care and disability coverage ... just in case. Disability coverage has been a God-send for me.

Good Luck!

This message has been edited. Last edited by: Bruce,

Jim:
I just got back from Manitoulin Island, which is located in Ontario, Canada and read the boards. Yours read like a looking glass when I was younger. I am 46 years old and had the exact same symptoms when I was in my twenties. My cramping was mainly in my legs and upper torso. Everyone told me to eat more potasium or drink more juice, but they never worked.

Eventually, when I was 40, my family doctor sent me to see a Neurologist. He did many blood work ups and the testing for Kennedy's. To that point in my life, I felt great and that this was just a family anomoly.

If it hadn't been for the testing, I think that I would have gone on with my life and summized that I was just getting older.

Yesterday I spent the day, from 9:00 am to nightfall building a deck a camp. Throughout the day, I did it, cramping, resting, eating, laughing with my wife, feeding the ducks and just enjoying a bautiful day. At the end of the day I felt great, it must be a plateau that was giving me the day to enjoy.

To live with Kennedy's is not a sentence of things coming to an end. It's a sentence of how to LIVE your life in a new way. I will never be first on race day in a bike race, but I will finish and I can tell you what colour the flowers were along the way.

There have been days where I have gone for a long walk and halfway through I have had to call my wife because of weakness and the inability to put one foot in front of the other, but I know there will be more walks, walks that will be complete and rewarding.

I live my life to the fullest, however, there's a new fullest in town and I've learned to work with it. I share everything that I feel with my wife and son about how Kennedy's and I are doing that day. Sometimes I get a hot bath run for me and other times it's an encouraging pat on the back for a better day tomorrow.

The worst thing now for me about Kennedy's is cramping up when when getting intimate. Funny...Kennedy's (cramping)never hits you in that muscle

Take care...

Dan

Dan, thanks for sharing. What a great story and an even better attitude.

There is an old saying about "living one day at a time". Your message is an excellent example of how to live your life.