Old 02-07-2008, 10:10 AM #1 (permalink)
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Default Rolfing and ALS?

my mother in law as most people are aware was diagnosed with ALS in Aug 07........she has since deteriorated rather swiftly. she is in a wheelchair and has very little use of her arms. about the only thing she is still able to do is lift a fork or a cigarette....she can no longer manipulate a lighter, etc.

she has an appt today with a Rolfer.....I'm wondering if any PALS have tried Rolfing and what the results were?

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Old 02-07-2008, 11:08 AM #2 (permalink)
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No experience here, but it surely won't hurt her. My mom suffers from general all-over sort of pain because her muscles aren't being used. She sits and sleeps in her recliner 24/7. I would think it would help my mom to get a massage, but she won't have it. My sister rubs her feet and legs to help with edema.
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Old 02-07-2008, 03:10 PM #3 (permalink)
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thanks for your reply. i wasn't sure about it because i hadn't heard much about it.
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Old 02-07-2008, 03:34 PM #4 (permalink)
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As luck would have it my massage therapist (Registered) was here today and on questioning her on this she said she would NOT recommend it for an ALS patient. She knows a Rolfer and has had the treatments herself and would be surprised if this person took an ALS patient. She surmised that the therapist was not knowledgable about the muscle wasting nature of the disease if they took your mil as a patient. That's her opinion. She's a RM and an Advanced care Paramedic. I'd tend to believe her.
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Old 02-07-2008, 03:48 PM #5 (permalink)
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Thanks Al.

I was concerned. I don't know much about Rolfing, and i couldn't find anything anywhere that it would be helpful....to me it seemed like it might be pretty painful.....

seems like there is always someone somewhere who is willing to take your money however.
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Old 02-07-2008, 11:19 PM #6 (permalink)
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I don't want to sound really uneducated (dumb), but what exactly is Rolfing?

Thanks.
Pam B in Va
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Old 02-08-2008, 06:36 AM #7 (permalink)
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Pam,

I don't know much except that it is somewhat like deep tissue massage but beyond that, i don't know alot.

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when my mil got home yesterday, my husband and i asked her about it, how it went, etc. she said it was painful, but it did loosen stiffness in her neck. we asked her if who she saw had ever treated and ALS patient, and she said no, and also, they didn't know much about it either. (why she would let someone work on her with no experience with this disease, i'm not sure.) I'm expecting her to be pretty sore today.
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Old 02-08-2008, 06:46 PM #8 (permalink)
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My source said this type of deep tissue massage would do irreversible harm to our muscles.
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Old 02-08-2008, 07:57 PM #9 (permalink)
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Texgrl and Al,
I am so glad that I asked my "dumb" question. Thank you so much for this information. I was getting ready to make an appointment for my husband for a deep tissue massage. He has been wanting one for a while and I thought I would give him one for Valentine's Day. What a gift that would have been! Yikes!

Texgrl - I hope your MIL is feeling better and will not have an adverse reaction to her massage.

Have a good weekend.
Pam B in Va
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Old 02-09-2008, 10:32 AM #10 (permalink)
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Hi,

Interesting thread. I went to PT on Thursday. They are aware I may have "Atypical ALS.' or MMN, and I was sent there by the ALS Doc I may have a torn rotator cup (wrong med term) and I have atrophy and arthritis. They really did lots of massage on my back, hips, leg, arms and hand. They were done by therapists and machines. I assume the machine electric charges are "deep massage." It all seemed to help a lot, but now I am a bit concerned. Should I be?

Also, I looked up Rolfing on the internet and yep it says "deep massage." But my husband and I remember it from the 70's and it was used to release a lot of "stress, or emotion, or psychological pain." The idea then was that the muscles held on to the emotional stuff and Rolfing released it and people cried and cried and felt "cleansed." Anyone else remember that? It did not look like that was still the purpose, but that's what we remembered. Take Care, Peg
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Old 02-09-2008, 10:50 AM #11 (permalink)
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Hi Peg,
Aww the 70's... fun times! I was only a teenager in the 70's so massages weren't my thing. I was so relaxed, I didn't need a massage. LOL As for this era and Rolfing, I'm not sure if what you had is the same thing. I would ask your doctor before doing it again. Then again, it seems like one thing works for some people and not for others. I hope you have good results from your massage.

As for the surgery on your rotator cuff, Eric had that done in 2000. You two are 2 peas in a pod. His UVA doctor told him that before any other surgery to contact him, because there are antibiotics that are used during surgery that he never wants Eric to have again. Something about some surgical antibiotics can make more neurons die off during anesthesia. I'm not exactly sure of the terminology he used, but that was the gist of it. I think I need to take a recorder in with me to the next meeting, so I can remember exactly what they say.

Have a great weekend Peg!
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Old 02-09-2008, 11:00 PM #12 (permalink)
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Thanks Pam. I appreciate the information. You have a great weekend too. Peg
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