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Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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I'm sending this from my phone, please excuse spelling, punctuation, or capitalization errors.

I read bruce's blog today and reread the natural progression of kennedy's disease and as a result have a few questions about dysphagia.

For several months i get very congested after eating and also have a gurgly voice. According to the american speech-language-hearing associstion and a couple other medical sites, these are signs of dysphagia.

Questions:

1. What symptoms of dysphagia do others have?

2. Are my symptoms less worriesome than actual choking?

3. According to the chart, the average years between dysphagia and death are 11, should my family and i be concerned?

Thanks


Pocatello Jim
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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Ok, i will answer my own post. Yes, i know these are questions for my neurologist or speech pathologist. I am not asking for medical advice, just thoughts and opinions.

Also, i do not base my life expectancy on the study. Because there are too many unknowns. And so fat, i dont fit the traditional kd mold.
1. My cag repeats are only 42.
2. My tremors have been with me since childhood. But became a problem about 19.
3. My mother took a medicine to prevent miscarriage that has been shown to affect severity of other neuro diseases.
4. From age 3 - 12, i had several surgeries due to chronic ear infections.
5. because of the above, it is hard to say if my early onset of kd symptoms is related to kd or other health issues.
6. I work closely with my health team to manage my kd symptoms and regardless of life expectancy, that will not change.

Like i said, i would really just like to know others thoughts and opinions about the dysphagia.

Thanks


Pocatello Jim
Location: south carolina
Registered: 10-09-2011
Posts: 20
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Jim

I really have no idea reference the dysphagia. I know that I am doing pretty good strength wise and able to get around well where the average person who saw me would say nothing is wrong with him, still able to do pull up push up with no real problem at 43 years of age able to do 3-5 pull ups and 40 push ups at a time but I was told not to do that at my last MDA/ALS visit they recommended 1 pull up and like 10 push ups. My main concern is atrophy that i am seeing in my left arm, forearm, hand fingers not many people notice but when I point it out there like oh yea. I have talked to a few on here and not many people talk of the muscle wasting that I am experiencing so that is very bothersome to me.

My Neruo at the clinic is matter of fact about it and not concerned about it so that makes me feel better i guess but maybe they are like that cause there is really nothing to do about it and do not want to worry me or exasperate the anxiety that i have with this disease so I plug along.

They do reassure me that it is not ALS I am still stuck on that after being told earlier that it was ALS it is hard to shake that and the fear is still there.

I doubt this helps but I think I feel the uncertainty that you feel all these unknowns are sometimes hard to cope with at least for me they are.

Take care Jim and drop me line if you just need someone to talk to I am here for anyone who needs an ear.

Dorsey
Registered: 08-02-2009
Posts: 206
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Hi Jim: I would always encourage you to see your physician or physical therapist for correct information, but meanwhile I can share what little I know.

As you may know, dysphagia is difficulty in swallowing, but dysarthria is difficulty in speaking. If you have a gurgling voice, I think that would be considered dysarthria rather than dysphagia. Physical and occupational therpists have strategies to help both of those conditions, since they often affect patients who have had a stroke. You are not alone, and you are not even rare in this case, since many other diseases besides SBMA cause dysphagia and dysarthria.

For my part, my voice is pretty good, although I do have a tendency to go high-pitched and nasal, which irritates me slightly because I think my voice doesn't sound masculine. On the other hand, my swallowing is sometimes terrible. My main symptom is larnygospasm or "dry drowning", which is what happens when breathing and swallowing get mixed up. My larynx spasms shut and I feel like I can't breathe. There are lots of other posts on this forum about laryngospasm so I won't try to recap them here.

Also on the forum, there are posts about the dysphagia exercises such as the Shaker exercise and the Mendelsohn maneuver. There's no doubt in my mind that I've gotten enormous help from these exercises, and my swallowing has improved.

Concerning the question about the 11-year interval, I don't know. I tend to think that number is a median or average, and your actual results will vary significantly.

One last point: a major risk to people with SBMA is aspiration pneumonia, which is what happens when you have trouble with the transition between swallowing and breathing, and so you inhale a bit of food or saliva into the lungs. For this reason, everyone with SBMA should talk to his doctor about getting the pneumonia vaccine.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, Dan has done a good job of explaining the issues and concerns. Most of us living with Kennedy's Disease at some point begin to experience swallowing problems. I have not heard of the eleven year average and find it difficult to accept. Perhaps there are levels of dysphagia and at the worst level this occurs.

Swallowing exercises are important. I practice them every day and they help. I only experience problems occasionally and aspiration issues are more of a concern for me. Most importantly is the need to be aware of what you are doing ... drinking, eating, breathing and not try to combine two or three because it does not work very well. :-)

I have had the symptoms for 35 years. Choking is something I have to be aware of, but I still have a tendency to not listen to my mother's sage advice, "Don't talk with your mouth full."
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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Thank you Dorsey, Mike, and Bruce for your thoughts and responses.

Dorsey, I am also 43 years old and I think the reason that I get so worked up about these things is that I am so young and have so few repeats. I am constantly reminding myself that research finds correlations, not causation. And, that just because KD research indicates a strong correlation between CAG repeats and symptom onset, it does not, cannot (because of the very nature of research) reveal causation.

As far as excerising goes, I have been a patient of three different neurologists in the four years since KD was identified. The first two recommended light exercise but did not refer me to a physical therapist or recommend any exercises. The last one referred me to a pt last July and that has made all the difference.

My pt spent three months helping me develop an exercise routine that strengthened my legs and core and has dramatically increased my mobility and balance. Three weeks ago, I joined a gym so that I could continue my routine. When I joined, I also got two free sessions with a personal trainer. He and I developed additional routines to strengthen my arms and back. I am now working out 45 minutes to an hour, three time a week and I love it.

Dorsey and Bruce, as always thank you for your sound advice.

Bruce, the 11 years came from the Japanese Study titled, "Natural History of SBMA: a study of 223 Japanes patients." I simply counted the number years between the median ages of dysphagia and the median age of death; 11 years.

However, I think Dorsey is correct and I am likely over simplifying the results of the research.

Also, the gurgly voice only happens for about 30 minutes or so after eating and occurs at the same time as the sensation of deep chest congestion and coughing, which also occurs for about 30 minutes after eating. This is why I believe it (voice gurgling) is related to dysphagia, not Dysarthria. My next step is a trip to the Dr. I will also begin the exercises that you recommended.

As I mentioned above and from time to time in the forums, I am concerned about my low number of CAG repeats and my young age of symptom onset. When I look at the chart of the japanese research, I am experiencing KD symptoms at much younger ages than the median ages they indicated and it does cause my wife, my children, and I to pause and reflect on what this could mean for my family and me.

However, we pause, we reflect, we even mourn from time to time; then we get up, and live our lives. We have faith, we have hope, and we live our lives to the best of our ability each and every day. Then, whatever comes, we have a lifetime of joy, laughter, love and experiences that we share together.

Again, thank you all for your comments and thoughts.


Pocatello Jim
Picture of Pocatello Jim
Location: Pocatello, ID
Registered: 05-24-2008
Posts: 109
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Sorry, that should say Thank you Dorsey, Dan, and Bruce. Not sure why I kept saying Mike.

Could be because my son, Mike, turned 18 yesterday and we are celebrating his birthday later today.

Yeah, that's it.

Again, sorry Dan.


Pocatello Jim
Picture of Bruce
Registered: 09-28-2005
Posts: 654
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Jim, there is always a danger in interpreting research summaries without reading the entire study and asking for a medical opinion. In other words, don't assume anything without the facts. :-)

Take care of yourself like you have been recently and enjoy this wonderful life that you have.
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