Dave Dahl
Forum Replies Created
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That CBD is actually a medicinal marijuana in rub-on form.
Another item that may be of interest about pain and sleeping, a friend recommended a book, Earthing-Clinton Ober which talks about a person’s relationship to the earth and how it can be a healing power in our lives.
For those who are in warmer climates it is easy to connect to our earth. In northern climates there are pillows and sheets that can help one to connect. A quote from p.164 states that after being diagnosed with ALS sleep became erratic, a earthing blanket helped. Also a mat and diet changes have made this person remain stable for the last year.
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Staying in the present is tough. We have a new granddaughter and I wonder at times if I will get to see her go to school. I wonder if I will get to see my other adult children get married. It is one of those difficult to swallow pills that everyone faces. We are all on our way, pALS have an “expiration date” (I like that). I know I want to get really old and stinky- go way past time.
Let’s all try to be upbeat. Dagmar and others have such a positive vibe. I know I am working on that. My wife is great, always positive.
Hang in there all.
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Hi all,
During a virtual support group a few months ago, a person mentioned she uses CBD ointment to relieve the pain of her toes curling. It comes in a stick like deodorant in blue or red (the potency). I don’t know if that is available in your state, but it would be worth checking out.
My concern is that AFOs will make me less mobile without them. (so stubborn)
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Hey All,
I have been wondering about this very thread. Thanks.
The fatigue is what I hate. Used to be able to exercise like crazy. I will definitely keep working. I was told sub-maximal work. Never too much because that can hurt me. The exercises here will help because all I was told to do was a wall stretch for my legs and some hand exercises.
Thanks again.
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Thanks, Dagmar,
I wish we would have had that article before our first clinic. We have compiled a number of questions for the next one.
I am hoping to channel the positive attitude and energy I read here into every day.
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Is it ok to ask the doctors to be honest and true with us? How do you get the doctors to tell you what they are seeing? Our clinic just took measurements and said see you in three months.
Is it ok to ask people what they are doing to be as well as they can be for as long as they can be?
That is what is frustrating to me, that no one seems to have any answers.
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The doctor at ALS clinic said that this treatment cost about 150,000 a year and the results had been just so-so. They had not had enough people try it to really know what the benefits could be. This person did not seem to think the result was worth the cost.
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Not yet, I will try that other link (https://www.als.org/advocacy) as well. I agree, Amanda, that we need to band together to get treatments approved for ALS patients. We need people to see the incredible urgency for those who have been diagnosed.
dave
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I have contacted my representatives in D.C. about the RIGHT TO TRY act and how it is very telling that we allow the rich and famous to use experimental drugs, but not those of us who are literally fighting for our lives.
I would do that, it can’t hurt. Though there are few pALS out here, if we all write, call, however we can we might be able to move the needle.
dave