Duane
Forum Replies Created
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Linda, I have a similar problem. We use a portable urinal. They are used by truck drivers and come with a female attachment. Amazon sells them. Otherwise, plan your trip around your BM as well as you can, and buy an elevated toilet folding frame. I cannot get up from a low seat without armrests to use to push myself up since my back is weak. I hope this helps
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Your ankles may weaken and cause you to fall. I wouldn’t resist using a walker or a rollator to try to prevent falls in the future.
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I’m careful with dry particulate foods such as rice, nuts. Otherwise I eat most things orally. Have had ALS since 2005-6 and am pretty stable.
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I was using Miralax, or Docusate Calcium but if you can eat orally and not choke, I suggest apples, pears, beans and 3 prunes daily, which will probably eliminate the need for a stool softener. I eat a serving of Fiber One with water every other day which gives me the insoluble fiber to keep me regular, but it is dry and a bit gritty so if you have trouble swallowing or choke easily then it is not for you. Insoluble fiber should be around 70%+ of your daily diet. Feeding tubes are another matter.
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‘UpWalker’ is just a brand name. There are many similar ones on Amazon and elsewhere.
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I have had custom AFO’S for a few years and they always create pressure sores at one or two areas on my feet. My main problem is foot inversion of both feet. I will be getting new ones soon from a different clinic and will address these issues. My PT says sores are common with wearers.
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Is it appropriate to use the word “cure” when discussing ALS?
• Does talking about a cure for ALS raise false hopes?
• Is long-term remission a better term than cure?“Cure” is a figment of the imagination. I believe using the word at this time may raise false hope with some people. Long term remission is, to my mind, is a better word.
But this topic is all about semantics. There is no long term remission or cure or meaningful treatment. We can word play all we want, but it changes nothing.
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Obviously it is not any one thing that causes it to develop over time. The onset of major symptoms is like the tip of an iceberg where the rest of it has developed over years or decades. First, I think there is a predisposition caused by a virus that does damage to the CNS. Then the disease progresses from there. Think Polio, and Shingles where the virus resides in the nerves. The symptoms of Post-Polio Syndrome are quite similar to ALS but usually with a lesser severity.
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And researchers need to do more comprehensive studies with long term survivors. Why some do better than others. Part of it I know is attitude towards the disease and it’s effects on you. Fighters stand a better chance.
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We do atrophy from ALS and it is not only due to lack of movement as a result of ALS. I can prove it to be true based on my own hands which I constantly have been using.
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I had my first major symptoms of ALS in 2006. Since then I have had strong Spasticity but very few to no twitches. Sometimes I startle especially when drinking coffee or listening to music with a headset.
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Some of these may exhibit a “side or secondary effect” as well as a main effect.
Regarding this topic, here is a excellent article concerning what is happening at Mayo now:
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I wish the good Dr. Bedlack would change the name of it since it “untangles” nothing. Unfortunately human studies are lacking on many of these substances and while they may be in general safe, there is always a possibility of an adverse reaction in certain individuals.
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The Association does a lot of good, but like the rest of us they don’t have a solution to the problem. With research being what it is, I think their goal is unrealistic. My guess would be to double that, and you might get a cocktail that slows it. Aloha Frank said it well.
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Burning coal creates toxins one of which is mercury. Its reasonable to assume some of it ends up in water in the area. Heavy metals like lead and mercury are most likely a factor as well as algae blooms. Leaded gas. And probably a variety of other things.
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First, I’m grateful for my caregiver, and other caregivers. Second, I’m grateful for my alert and sharp mind. Lastly, I’m grateful for what I can still do for myself.
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I have been using a cpap/bipap for many years. Recently I had loud leaks that kept me and spouse awake most of the night. I adjusted the pressure down by 2 levels and now I am sleeping like a baby and no leaks, or noise. I looked into options and methods on YouTube for adjusting it and it has worked very well. The pressure was too high for some reason. I have a Dreamstation.
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‘something different from a molecular drug’ . Unlimited research is the key to success.
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TUDCA is an OTC supplement that is widely available.
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I believe low cholesterol is part of the problem with ALS.
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Hi, that is basically the approach I have been using. And then I use a hand held urinal in bed before stretching and getting up.
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Perhaps Miralax would be of benefit to you. And prune juice thinned with water.
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I agree with you.