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Lavender Lady

Distinguished member
Joined
Jul 6, 2010
Messages
445
Reason
PALS
Diagnosis
08/2010
Country
US
State
WA
City
Lake Stevens
Just wondering has anyone tried these and or acupuncture for treatment of ALS? Have any of you tried Prayer Rooms? More questions that was brought up to me by a family members. Thanks,
 
Accupuncture will not work, Rox. Family members (at least my own) will drive you wild with suggestions... I know that God (the prayer room question) can heal, that it's in fact not a big thing at all for Him to do, but having prayed, been prayed for by many churches and even in a "prayer monestery" where a dear friend gave them my information, and been anointed with oil by the elders of our church, the Lord has, so far said "no". "No" is an answer. And He didn't actually say anything out loud, but rather asked me a question silently. That is how He often communicates with me, and I know His voice. Smile. It's really quiet.

"Chinese herbs" is a cure which I've read about in the past. I have no reason to think it's anything but a way to line someone's pockets. At least I know of a reputable accupuncturist who admitted they can do nothing for ALS. For some symptoms, maybe. (inability to sleep, depression) For what they can do, as I've seen it done for others, it's purely temporary, thus expensive even for the symptom relief.

I would do a search for these cures here in the forum, Rox, and see what others have found helpful--or not. Actually, looking at the bottom of this page, there are threads listed concerning Chinese Herbal Medicines. Remember that if there were a cure, we'd all be talking about how to get it for ourselves.

Sorry to be such a "downer", Rox. I just hate seeing hopes raised and then dashed once again. You are in my prayers. The Lord is the only "hope" I know of...

XO,
Ann
 
Thanks for being honest Ann. I tear the Internet up looking for answers, anything that will help symptoms or at least help my husband plateau.
 
Missy, I know you would do anything to bring healing to your husband. When I was not yet diagnosed, I looked into a lot of things myself. I still believe that it's important to add anything in the way of vitamins or minerals or herbal things for bone density, as so many of us (including men) end up with very bad bones. I had osteoporosis in my forties, and we (Phil and I) expected that I'd end up breaking my hip at some point. I found, by God's grace, a slow but sure way to make my bones return toward normal. By the time I was diagnosed, I didn't have osteoporosis. I took some very bad falls, and one could have broken my pelvis, but didn't.

I believe a doctor posted here (possibly at plm dot com) that every als person he'd seen had extremely low Vit. D levels (D3). At the ALS Clinic, the dietician told me that my taking 2,000 units daily was to continue, basically, for life and that nearly everyone (not only ALS patients) are low or very low in Vit. D. It's been a wickedly hot summer, but every comfortable day I can, I try to get some sun on the deck. Sun is still considered the most easily absorbed source of D.

This is such small information, in that it's simply to decrease pain (sort of the nutritional version of Range of Motion exercise). The only other tip would be for when (IF) the person is confined to a wheelchair and/or bed, and still eating by mouth. Search "constipation" and find out what to keep away from and what to really try to eat. Being without abdominal muscles combined with no real activity creates a monster in a hurry, because you no longer can "push". The Clinic dietician is also very helpful if asked about constipation... Last hint is try to stay away from the big pain killers. Morphine, etc. will cause extreme constipation if used for an on-going length of time.

So, bone health, vit. D and keeping a happy GI tract are all I know of to do...

Love you both,
Ann
 
Thank you so much Ann! I need to check into his vitamin D levels. Currently, he is taking a multi vitamin, B complex, COQ10, L carnitine with Alpha lipoic acid, E, and Flax Seed Oil.
 
I have quite a close friend who is a qualified doctor of CHinese medicine. She would help me if she could but admits that there is nothing. She says some claim the acupuncture can help pain and MAY slow the disease a little but she has v little faith in that.
Iris
 
Great info Iris. When you receive your diagnosis all of your family has a different idea of something that will help you. There intenetions are good but you would have to think that id these remedies actually worked it would be well publicized and everybody with ALS would be doing it. There is a cure out there, it just hasn't been discovered yet. I believe that and pray that it is found during our lifetime!
 
Food is our medicine. That is why I use the vitamix and puree real food for Mom. Organic fruits and veges all in season and fresh. Some meats too for protein but mostly grains and veges.
 
IrisMarie, that's good to know from someone who is educated (your friend with the Chinese medicine) and honest. Laura, you are a dear and your mother is very blessed to have you as her caregiver. I also see food as "medicine" now. I eat more and more "medicinally" than for real enjoyment. It's the GI tract that has me hostage.

My parents honestly thought if I "just found the right doctor" there would be a cure. Mom was an RN, who'd been trained to think of doctors second only to God. I'd been diagnosed at Hopkins. I know they meant well, but that kind of questioning and needing explanation was so wearying. Ted, I jumped through a lot of hoops in order to help everyone else come to terms with my illness. Phil is the only person (my husband) who "got it" from the start. He'd already bought and read three neurology books, which helped him greatly.
 
IrisMaire,

Thank you. That is it in a nutshell is that we are helping others to come to terms with our illness. I have started to understand this that it may be harder for them then it is us in some ways. I have a strong faith in God as do many in our family, but for those who do not it is hardest on them as they hopefully will start to rely on God for strength during these trilas in our life.

As for the Chinese medicine theory I will put it to rest. My sister does want me to go to a prayer room with her, which I will do. I can always use prayer, sick or not.

Have a blessed day,
 
I think Laura's dietetic answer is one of the best. At least keep our silly bodies in as much health as possible. And her diet is one of the best. living food of masses of fruit and veg, which can be made into any consistency to follow your ALS down the line. Helps with bowels, too.
 
I know each PALS is different. But from my Dad's experience, neither Chinese herbal nor acupuncture helped. We tried several Chinese Medicine doctors in China, Los Angeles, and Florida. None of them helped to slow down the progression of ALS. To be fair, Chinese Herbal did help him relieve his constipation problem.
 
The best advice I ever got about trying various "treatments" for ALS was given to me by a 15+ year survivor (then -- he's past 20 years now) who said to me, very simply:

"If there was anything out there that really works against this disease, we'd all be on it."
 
trfogey,

after all I have read I agree. If there was something so miraculous to help that much we would all be on that wagon. It would be on the news world wide. Until that day comes I will continue to pray for a cure.
 
Well it sure seems as though we all go through some of the same ideas and feelings. Most everything mentioned is or has happened to us. We went to Mexico, Florida and Colorado, for medicine and stem cell. Botox in Florida for saliva, didn't really help. We were using the Bi-pap at that time. Eddie is now using a trac and has very good results, as trac's go. But, just wanted to say a big amen to the remidies that everyone want s you to try, it has been tried and has been found wanting. We are all wanting it to work.
Steven Hawkings is arguably, the smartest man on the planet. He has ALS, if they find a cure, they will give it to him. Sure, he is in the very advanced stages, but, they would do anything to help him, if they could.
You all seem to be grounded and rooted in the faith. You have the good and perfect gift. John 6:44 and 6:65
Jesus said, none can come to me except the Father which sent me draws him. None can come is a unversal negative. No one is able. It takes a God to draw a person to Himself. Believe me, when the body suffers sin loses it's power, 1 Peter 1,2 (There is exceptions to the rule)
As I had posted else where, Two natures beat beneath my chest, one is foul the other blessed. One I love and one I hate, the one I feed will dominate. The things of this earth will grow strangely dim, in the light of His glorious love.
This is for one who may not know, that you know, that you know, if you have not excepted Christ as your personal Savior, give Him a look. Ask, Seek, Knock. ASK.
There are some in our churchs you would not want to be handcuffed to if they were to pass this day. So, get it settled. Eddie got saved last summer. I took some water from his pond and the pastor used it to baptize him, what glorious day. Thanks for your prayers and may God save the soul that is nearest hell right now. Amen.

Jim
 
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