Kennedys Disease Community
Lifespan with Kennedy's Disease

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09-10-2014, 04:12 AM
Lifespan with Kennedy's Disease
Not to be morbid, but I would like to discuss death. Or at least request information from others who may be relatives of men who have had Kennedy's and passed on to share regarding thier age at death and if the cause was Kennedy's related.

I'll start. I am 54, diagnosed 15 years ago at age 39. I have 3 cousins and one brother that also have/had Kennedy's. Two of my cousins each died at age 70 due to respiratory issues. They did not have aspiration pneumonia, but a cold or bronchitis that they could not fight with their compromised throat muscles (ie,could not expel the phlegm) My brother died at age 56 due to head trauma caused by falling down a flight of stairs. His difficulty in navigating stairs and poor balance was definitely due to Kennedy's.

I do not consider these 3 situations in my family to jive with what the currently published symptomology of Kennedy's says both on this site and others regarding not having (much of) an effect on the lifespan of those of use who have it.

I am currently in the process of applying for Social Security Disability Income, and believe that if the professional literature reflected a more accurate (and unfortunately more affected) reality with regard to lifespan that it might be easier to get disability. Plus, I think it is better to know than not know. Knowledge gives us power to make decisions that could possibly lengthen our individual lifespan by not continuing to do stairs longer than we should (like in the case of my brother) or being more careful to not get exposed to respiratory illnesses (like in the cases of my cousins).

Plus if the literature did report that mortality can be significantly affected and that data did make it easier to get Disability sooner, that would actually serve to potentially lengthen lifespan as the individual on Disability is able to slow down and de-stress and take better care of themselves.
09-10-2014, 10:06 AM
KDA Adminstrator
(Sorry, I just noticed I was logged in as the Administrator. This is Bruce responding and not Terry.)

DB, as with anything in life, there are no sure things. I had two brothers with KD. One died at 67 after breaking a leg and coming down with pneumonia in the hospital recuperating. My other brother was 76 when he passed away. I am 67 and am fairly healthy, but I have taken precautions for several years now to minimize the chance of falls, getting my annual flu shots and pneumonia boosters, when needed. I try to eat fairly healthy. I exercise every day (smart exercises). I try to stay engaged and active with family, friends, neighbors and others. Yet, I could become very ill or die today.

The 'almost normal' life cycle is based upon many factors. Men don't all begin to see symptoms as the same time in life. It is rare, but they can begin to show symptoms in the late teens or the 60s and 70s. The CAG Repeat length also has a bearing on the severity of the symptoms. Someone borderline, might not know he has KD for most of his life. Someone with an extremely high CAG (in the 60s, for example) might have many more difficulties early on as well as through his entire life as the condition progresses.

Social Security Disability is based upon 'your inability' to safely and effectively do your job or a similar type job. Have you read the guide available on the KDA website? Many people have used the guide and been approved the first time. The key is to do your research, get to know your local SS-D representative, have a well thought out and detailed report, and make your case.

If we can help you make your case, please let us know.
11-11-2014, 07:14 PM
My husbands' uncle passed away last month at age 70. We were told he had walking pneumonia which he just couldn't fight.
As a spouse, this news scares me to death. Every time we are out and I hear someone cough or sneeze nearby who doesn't cover their face, I just want to scream at them! They have no idea what this can bring upon you men who suffer from Kennedy's or others who have MD.
My spouse also gets out each day to walk, move around and stay active. When he coughs, I encourage him to cough harder to keep those muscles strong. I think it has helped as his could has improved in strength.
None of us know when are days here are finished. Just live each one the best you can, no regrets.
11-13-2014, 08:34 AM
Lolo, good advice. We should be mindful of ways to reduce contagions in our life as much as possible. Annual flu shots and the pneumonia vaccination are a necessary precaution. Practicing coughing (hard coughs) every day is also helpful. The diaphragm is a muscle and needs to be exercised to help maintain its health.
03-29-2015, 11:26 PM
I recently had an appointment with the neurologists here at the MDA clinic in Salt Lake City. They told me of a device called a "Coughing Machine" that can be prescribed for individuals with Kennedy's and others who have respiratory issues.

What it basically does is "suck" the wind and thus mucous and fluid out of the lungs and passage ways so that it never becomes a life or death situation. They told me that rather than wait for an illness to occur, that it should be requested when significant difficulty coughing on ones own is occurring and then used on a daily basis for the rest of ones life.
03-30-2015, 11:06 AM
DB, I know of several people that have used this device - most when then were in the hospital. I hope a few comment in the forum on their experiences.

My neurologist recommended that I practice coughing every day. Good, hard coughs is what he told me to integrate into my daily exercise program. I have been coughing for several years now (at least once or twice a day).

Give it a try and see if it helps.
06-06-2015, 10:58 AM
graham lee
Hi Everyone. I use this machine every day, 3 sets of 12 repetitions. In the uk it is called a Clearway cough assistor. It pushes 30cm of air into my lungs in 2 seconds, it immediately reverses and withdraws the same air in 1.1/2 seconds. Just big breaths really! As you breath out you tend to cough anyway. The idea is to keep the airways clear. It takes about 5 minutes each time you use it, so 15 minutes a day keeps the doctor away. My best to everyone.
12-11-2018, 04:53 PM
Graham, is there any feeling of uneasiness or unsettled feeling using that machine? My husband dislikes medical equipment but sounds like that machine would keep you deep breathing and deep coughing so much longer! And or bring back deep breathing/coughing. When my husband just broke his leg, I was absolutely sure he did NOT go into surgery until I spoke to the surgeon, anesthesiologist, and the recovery nurses and his dry drowning and my fear of aspiration pneumonia! I said I didn’t want him dying over pneumonia while there for a busted leg. Each time I visited him, I handed him that little thing every surgery patient has to blow into that lifts the balls. He wasn’t going to go down hill on my watch. I made sure his hands were kept clean, everything around him was clean and that staff was clean and also in the two rehabs he was in. If it wasn’t clean, I put up a fuss. I also fought for two weeks just for a flu shot!

God is the greatest physician of all.