I have noticed the pitosis starting to affect me not to a huge extent yet but just noticed more drooping not enough to affect driving or other activity yet.
The dysphagia is starting though I have good and bad days so I have to be mindful of my diet on the bad days to avoid choking. It’s weird on the bad days it is like I cant feel a swallow it’s kind of scary. Has anyone had the balloon procedure?
I think if the bad days become more prevalent I need to start thinking about it more. Where I live (Georgia, US) no doctor or hospital is aware of this disease so I am told it’s a feeding tube if it gets worse I know there are other options and some doctors or hospitals that are more educated about this disease. What can you tell me?
The dysphagia part is what worries me so much. Of course those that are also affected with arm/leg impairment is also a big concern. My mom had the pitosis I dont recall her having the dysphagia and my grandma had such bad dysphagia she lost tremendous weight and died of pneumonia but at that time little was known of disease.
PS Has anyone heard about the BB 301 trials yet by Benetec? I hope they can go to human trials soon for all of us.
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Hello I just heard about bb-301 and I am going to a doctor soon and I am going to ask about this.
I get my throat stretched to help me swallow better but I do have bad days also.
Does anyone feel light headed with this OPMD.
I feel this everyday all the time.
My muscle weakness has got really bad I use a walker all the time now is there anyone that knows how to keep muscles stronger?
I know it’s probably not what you want to hear, but dysphagia is the most common symptom - and if you wait too long, it can be deadly. Aspiration-related pneumonia is the single largest risk factor. My mother was diagnosed last year at 64. She had been having sporadic issues with swallowing/food catching since 59, but it was seemingly random and would go away as quickly as it appeared. None of us knew what to look for (especially with such a rare/mostly unknown disease), and while in retrospect the symptoms were there, it wasn’t something that truly stuck out.
Fast forward to her 64th birthday and she woke up one day being completely unable to swallow food or drink. Over the course of that first month, she probably averaged 300 calories per day. She went from working full time to being unemployed and losing 30 pounds in one month, and was on death’s door - I’m honestly shocked that we didn’t end up in the emergency room. At any rate, after about a month and bouncing around from place to place, she was diagnosed and 2 weeks later, we had the PEG tube installed. In the final two weeks before surgery, she had “adapted” somewhat and was able to get down about 1,000 calories per day but was constantly aspirating. Over the past year, she has lost another 5 pounds but is up 5 pounds from her lowest weight.
I guess what I’m saying is: don’t wait. My mother was on the older end of the spectrum in terms of onset of symptoms, but I think that made things all that much worse: when they did kick in, they really kicked in, all at once. You don’t want to wait until you’re incapable of taking in nourishment - and especially with COVID issues, scheduling surgeries and appointments is all that much more of an issue.
If you’re still able to swallow, get the respective myotomy (CPM or whichever is recommended) or Botox to help eliminate/prolong the need for a feeding tube, or consider the PEG before it becomes a life-threatening issue. With this disease, symptoms don’t get better over the long-run. If you have a relatively mild case, a myotomy might allow you to swallow food without much risk for the rest of your life; in my mother’s case, that’s not a possibility. We’re now having to consider the CPM anyway because constant drainage is now building up in her throat and choking her, and it seems to be the only real solution to addressing this problem.
We’re also in Georgia, and 1.5 hours away from the nearest MD center. Virtually nobody in our area understands the condition and I know how frustrating it can be.
I think the “PEG” feeding tube is the only reliable to avoid aspiration pneumonia, and maintain body weight.
No I have have my lids lifted but it did not last to long because of my weak muscles.