Living with OPMD

I'm new here: What supplements and nutritionals do you take?

Hello, I’m new to the forum and would like to find out how others are trying to mitigate the severity of their OPMD with supplements, nutrition, and or specific exercise. I am 37 and just beginning to feel symptoms of ptosis and excessive soreness in my legs. These are the hallmarks of how early OPMD has expressed itself in my family.

My father is likely going to succumb to chemical pneumonia soon at 74, which is 10 years older than his father and uncle were when they passed from the same thing, BUT my father took a TON of supplements. That is why I am extremely interested to hear anyone else’s experience with nutrition.

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Marky, welcome to our community!

I hope you don’t mind, but I changed your subject line to something that might attract a bit more reaction. We want to get this conversation rolling!

We’re glad that you found us, and we hope that you will be too.

Seenie from Moderator Support

Nutrition is critical. As you know, I’m sure, Dysphagia, which is initially mainly for solid and dry foods, progresses slowly and eventually even swallowing fluids, including saliva, may become a problem. If dysphagia is severe there is a danger of aspiration (food, drink or saliva “going down the wrong way” - into the chest rather than stomach) which greatly increases the risk of a chest infection. After many years the patient may become aware of limb weakness, first around the shoulders and later around the hips. This is usually relatively mild but can occasionally be severe and disabling, many years after the first onset of symptoms. Facial weakness may develop, and be commented upon by the specialist, but rarely causes any particular problems. Life expectancy is little, if at all, altered.

There are some new treatments (or old depending on how long you have been on the road. there have been a few reports of the use of botulinum toxin
injections; rather than cut or stretch a muscle, the toxin relaxes the muscle and that can aid swallowing. However, further studies are needed to see whether this will prove to be a useful longterm treatment. If the dysphagia is preventing adequate nutrition or there is a risk of aspiration pneumonia, then alternative methods of feeding can be used. The most acceptable, in the long term,
is gastrostomy. A minor operation is used to pass a tube through the front of the abdomen directly into the stomach. Patients and their relatives find this easy to manage at home. If the normal diet is compromised, then a dietitian is your best source ofadvice with respect to supplements which can help to maintain
adequate nutrition. Supplements by themselves aren’t really much help, but because the immune system is compromised a lot of us find we need Vitamin D and frequently because of the neurological involvement our B levels are alos deficient.

I can not speak highly enough about gastrostomy even as a way to add supplemental nutrition.

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Interesting. I was told it was a back and forth balloon operation. They balloon you out, the disease eventually shrinks your throat again. I think I am getting close to that, as my wife says I snore too much, and I am not a heavy guy by any means. They gave me a CPAP, but it was a face mask, and I feel I am being smothered to death, like having a pillow on my face. I would much prefer one that looped around the ears and went up the nostrils.

I was told I was Vitamin D deficient, but I forget to take it. I have so many other medications a day. I hate going outside, but my face as a ruddy complection after opening up some of my trapped spinal cord. I forget to take it, as I was used to a pale face for years, until that was done, and I got my old face back, it looks less ghostly and my regular tanned look. So, I look in the mirror and subconsciously forget about it, as I think “Hey, I am not pale.” My son wasn’t used to it, as the rest of my family with my shiksha goddess wife is like paper. Though, I found out she was a whole 1 percent. I have 6 family origins on both sides of the family that are of Jewish descent. Honestly, given my mother’s state, and now mine, I am certain that is how it was passed as there is Sephardic on her side of the family. We don’t practice Judaism. However, I was raised to keep the Shabbat. Not in the Hassidic sense.

I am still amused by my 14 year old son saying, “Dad, you have stuff on your face.” I laughed, and said, this doesn’t come off with a wash cloth. He did not believe me. So I told him son, “It is like trying to wash off someone with a darker complection than mine. They will not appreciate it.”

Here are a couple of things that have helped me:

  1. Glycopyrrolate (Robinul) recommended by the MD Clinic. I take this before bed. It helps control the amount of saliva. Before I was having to wake and expel as I was drooling and felt that I was drowning in my own saliva.
  2. Ice Chips. Usually my first swallow is the most difficult and dangerous. My speech therapist recommend taking a few ice chips and letting them slowly melt and then swallow. I find this helps. Give it a try perhaps it will help with your first swallow.