Recently found that I am unable to gargle. If I have a conversation I begin to lose my voice within 1/2 hour. I have woken in the morning to find a grain of rice or a pill from the night before stuck in my throat which I couldn’t feel. Increasingly dry mouth. I have had thrush for years which I control with lozenges. My throat hurts all the time now.
Does this all sound pretty familiar?
Has anyone had success with any type of exercise?
I’ve read much here about swallowing and speaking problems. I can’t remember reading much about the progression or any successes with slowing the progression through exercise.
Of course that might be due to my cognitive dysfunction or maybe I’m just trying to fit in with the group. I can’t remember.
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SaltyFlorist
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Yes swallowing loosing your voice and your mind are all issues with MSA.
My Sue has swallowing problems that can lead to chest infections that are dangerous aspiration pneumonia so be very careful.
I would strongly suggest discussing this with your GP or Consultant and get referred to a speech and throat specialist. Also you should start chatting with professionals about alternate feed systems (PEG) as you ability to swallow may deteriorate considerably and then how do you eat.
For thrush lozenges will not help. My wife uses a tablet called fluconazole again discuss this with you GP.
We all have to accept and adapt it's the only way to move on.
Yes Sue still eats and drinks with the PEG in place, but it is at risk so its when she feels she wants to eat. However she lost her sense of taste some years ago so it makes it easier.
Ask your GP about a thrush medication I am sure they will have something.
Aspiration is a big issue as it can lead to serious complications very quickly so I have emergency antibiotics i can administer quickly if i feel the need, again ask your GP.
This concerns a different issue with swallowing. I have had “Barrett’s Tissue” with my throat for several years. For the past couple of years I have had more difficulty swallowing pills which seem to have at least one stick in my throat. Have to swallow a lot of water to get it down.
Read an article which suggested I lay on my side when taking pills instead of sitting up. I have done that for the past couple of weeks and it has worked.
Hi SaltyFlorist, I see my Neurologist on 13 January as my voice keeps coming and going. Even at best it has taken on a gravelly sound, and then sometimes goes quiet. Sometimes I go to say something and nothing comes out until I try a couple of times. I feel my GP just sends me back to my neurologist when I come in with a new symptom rather that read up on it. I fully expect the Neurologist to say it's just part and parcel of the symptoms and I'll just have to get on with it. What else can he do anyway ?
Most people with MSA will eventually have problems with swallowing. For some this may occur relatively early in the disease progression. It is an issue that needs to treated seriously owing to the risk of aspiration pneumonia. I was aware of this shortly after first diagnosis so paid attention to my swallowing so that when I first noticed an occasional difficulty with taking pills with water I was able to alert my Speech and Language Therapist (SALT) and get a referral to their swallowing specialist for a series of tests.
The specialist confimed a slight degradation in the autonomic swallow function and I had advise about exercises, foods to avoid and methods to make pill taking and eating easier and reduce the risk of choking.
There are lots of possibilities for changing what one eats and how meals are prepared. It's a bit annoying to have to cut out things you like but there's now an excuse to have e.g. tiramisu for breakfast and all biscuits have to be Jaffa Cakes.
For pill taking at breakfast (up to 9) I'll be having them with jelly,trifle.tiramisu,porridge or even a bowl of macaroni cheese. Eating is one of the important pleasures in life and MSA has robbed me of enough of those already so I 'm going to try only eating pleasurable stuff before the prospect of Wiltshire Farm foods special soft opions kicks in !
And I've ticked another item off my bucket list by rejoining the Sunday Times Wine Club.
And I'm STILL not having any F******G SPROUTS on 25th, pureed, mashed or otherwise.
I agree that eating is an important pleasure. I just changed my diet completely 18 months ago for better digestion. I’ve been enjoying all of my favorite foods and a lot of ice cream.
I’m very interested in the exercises so I must make an appointment soon. I’ve had good success with rehab therapy for my neck, posture and gait changes.
My husband failed his swallow study three years ago, and was supposed to drink only in teaspoon amounts. This was hard for him so I let him drink as much as he wanted with a straw, until he just could not do that. The problem of aspiration is real, and I would remind him of that as he tried to continue drinking.
We used a "speaker amplifier" for about six months and now his voice is pretty much gone. He is not able to speak with enough volume to be heard. The swallowing changes are very different from a stroke, in that exercises don't seem to help the swallowing, they just make him more tired. So our throat Dr did not recommend the exercises.
The changes in his swallowing went from swallowing ground food, to pureed food- only PUDDING texture -for swallowing. Over the last 6 months , it is just plain too tiring for him to eat a supper meal. I used to puree several foods, and his taste buds were fine, but he would just hold the food in his mouth. So I started more tube feeding type meals, and then he just has pudding for dessert. Now his only real meal is breakfast, which is a very smooth hot cereal called Malto-meal. I make it with eggs, and butter and cream, to pack in the calories.
It changes family meals, but we try to have something he can eat with us, even if I am giving him a tube feeding before he comes to the table.
We also did crushed medications with apple sauce for a year, but now they are all crushed and put in his PEG tube as well, along with water ,so he stays nicely hydrated.
Hoping you find lots of ways to compensate, and are able to make your needs understood.
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