Hello to everyone on this forum and thanks to the KDA for supporting it!

To introduce myself, I have been diagnosed with KD for about five years. I am forty-three years old. For the most part I can do daily activities and I am mobile, although endurance is greatly diminished and going up stairs (or even rising from a sitting position) is difficult. There are a few symptoms I have had that I haven't read much about and I wanted to see if anyone else experienced these things.

First, I have noticed that it takes me a long time to feel fully awake upon waking up. I have to set my clock back two hours so that I can be fully awake for work. One aspect of this is that I notice weakness in my hands much more in the morning than later.


Second, I have recently found myself waking up from sleep, out of breath. Sometimes I will feel that I am going to throw up. Other times, I just can't catch my breath.

Just curious if anyone else has experienced these or similar things?

Pete

Hi Pete,

I'm 42 and like you am leading a pretty normal life (work, family, etc.) except when it comes to climbing stairs or walking up a steep hill. Then my KD really shows!

I haven't had your two symptoms per se, although I do notice that my muscles appear to be more fatigued first thing in the morning. My legs feel really heavy first thing but after a little walking and a cup of coffee they get stronger.

I get out of breath easily, especially when I'm bending over to do something. But I haven't had any of the episodes where I wake up out of breath. I do have terrible night sweats when I sleep, though.

Lately, the ringing in my ears has been more pronounced and my sinuses seem to be affected--it's like I have water in my ears and I can't get it out. This sort of comes and goes; doesn't seem to be any rhyme or reason.

Thanks for raising this topic. It seems like everyone has a little different symptoms, but we're all dealing and coping with this disease. It's nice to have someone to share with!

Kennedy's/SBMA is primarily a motor neuron disease but there have been studies that show modest, typically sub-clinical, impairment of the sensory and autonomic nerves. Which implies that this disease is unlikely to be the cause of your sleep/waking issues, nausea, etc. but might be a contributing factor.

The good news would be that if you can manage to identify other factor(s) for those symptoms you might be able to address them and obtain relief.

I've long been prone to restlessness/insomnia. For much of my life I considered it beneficial and had many productive hours that I might otherwise have spent sleeping. But it has taken a toll that is increasing and I sought out assistance. I've had good results from adjusting habits, setting a schedule for eating & sleeping, avoiding artificial light especially computer & phone screens in the hour before bed.

RE: out of breath - throw up

I believe a common problem with SBMA is GERD - acid-reflux. I know it is in my case. The condition is exacerbated by being overweight and carrying weight around the middle of the body. GERD was among my earliest symptoms I attribute to SBMA combine with overweight. I dealt with it by raise the head of my bed a few inches, and later, switching to an articulating bed.

While GERD is a problem unto itself it also lead to laryangal spasms where your vocal cords spasm and it makes it difficult to breath. Early events caused me to panic thinking I was choking. While the event is frightening to you and those around you (you make horrible sounds while trying to suck air into your lungs) it isn't really dangerous as it isn't life threatening like a try choking event is.

Over the years my experience is that it became easier to trigger the spasms. Usually cause is food or drink touching in a way to as to trigger the event. Smaller bites and complete chewing seem to lower the incidents. There are other triggers that at times are hard to identify. e.g. hot spicy foods.

Like other SBMA symptoms incidents wax and wane over the years. Currently they occur very infrequently for me. Perhaps my efforts to avoid them are paying off. I know if I slack off a bit on dealing with GERD acid-reflux events occur with early spasm symptoms as you noted in your post.

Once a spasm begins I have found the best practice is to try to remain calm and take very shallow breaths via my nose. If you catch it early enough the event can go away almost immediately. If not it goes away usually in under a minute.

I highly recommend you prepare those you send time with that on occasion you may have trouble breathing and may make horrible sounds and tell them to not panic, you'll be fine in a minute.

You won't be able to do much in the way of communicating once a spasm starts. I had a co-working try to use the Heimlich maneuver before I could stop him! I found one effect method is to hold an index finger into the air - basically a 'wait a minute' hand gesture.

Hope this helps!

--------------------

I should add SBMA does not make you immune from choking!!!! Just wanted to let you know that as one with SBMA laryangal spasms are likely to occur.

This message has been edited. Last edited by: Bob Heitzman,

According to WebMD.com, the following foods can trigger acid reflux or GERD:

• alcohol, particularly red wine
  
• black pepper, garlic, raw onions, and other spicy foods
  
• chocolate
  
• citrus fruits and products, such as oranges and orange juice
  
• coffee and caffeinated drinks, including tea and soda
  
• peppermint
  
• tomatoes
  

I agree with you that GERD can cause an incident of laryngospasm. I've had it happen myself. Antacids such as Tums help me, and I think doctors can write for prescription medicines if you have a more serious case.

I experienced acid reflux often enough that my docs (including ENT) recommended Prilosec (or its generic.) This was independent of SBMA. Works well for me. If I stop taking it symptoms return so I am taking it long term. Not a 100% solution but close.

Laryngospasms was also one of my early symptoms although for my most frequent experiences were while I was going to sleep. I have found that some of the exercises noted on the KDA website and a couple of additional ones I learned from a speech therapist have helped to greatly reduce occurrences.
A couple of years ago I had an incident whereby a particle of food became stuck leading some severe throat irritation. As part of the treatment I started to take a daily Prilosec type capsule and has also helped reduce food or drink triggers.
I used to enjoy spicy food but I now avoid them, it is just not worth the risk and discomfort from laryngospasms.

Dave, is it possible to provide any details on the type of exercises prescribed by the speech therapist? It could help some of us.

The original poster said his issue was waking from sleep out of breath which might be laryngospasm though it could be something else.

Perhaps the most beneficial thing I have done medically is to have a deviated septum corrected. As a child I had countless bloody noses from a variety of accidents, sports, fighting, etc. and it turns out the insides of my nose were folded up like an accordion.

However, despite numerous medical exams no doctor ever suggested it was likely a problem that ought to be corrected.

Until I told my neurologist that all of my choking and sleep issues were worse when I couldn't breath through my nose and any time I got hay fever or even a mild cold I couldn't breath through my nose. Because it had been that way for so long it didn't even occur to me that my nose was significantly damaged.

The surgical procedure to correct it wasn't too bad and the relief has been HUGE. I heartily recommend anyone with KD who has ever had a bloody nose get theirs checked out.

I thought I would add my experience. I was diagnosed with sleep apnea in 2005 and had surgery in 2007 to remove my tonsils, adnoids, and correct a deviated septum.

This improved my breathing and quality of sleep for many years.

Last year, my chest started feeling heavy when I breathed. I went to a pulmonary specialist who after several tests, informed me that my lungs are strong and working well. But he thought the "heavy" might be caused by weakened intercostal muscles (the muscles between the ribs).

For the last couple of months, I have been waking up gasping for breath. My primary care specialist ordered another sleep study (I just went last night). To confirm or rule out sleep apnea caused by something other than obstruction.

I can keep you posted on what the results are.

Dan I had shared with Bruce G. the details of some of the exercises I do regularly and I just checked and a number of them have been posted to the Share Information - Other Resources page of the KDA website try this link. It should take you to the face, swallowing and lung page and from there you can print a description of each exercise.

http://www.kennedysdisease.org...e-and-lung-exercises

I thought I would share. My shortness of breath during the day is a result of rheumatoid arthritis in my lungs, not KD.

One thing my PCP insists on is making sure that he and I do not attribute every symptom or health concern to SBMA.

I learned today that in addition to KD, I also have rheumatoid arthritis.

I will also share the results of my sleep study, after I get the results on August 6.

Jim, your comment is important for everyone. It is far too easy to associate every symptom and condition with KD. Just because we have KD doesn't mean that we can't have many other more common conditions that need attention and/or treatment.

That being said, KD might exasperate the other symptom or condition.