Aa
Doug
I suffer from MS for 4 years now. The last 6-8 months were not so bright and three months ago I reached full Paraplegia. I guess I do not need to tell you what it means.
I live with my daughter's family. Two months ago they invited another couple to stay for the weekend.
We had dinner together and it appears that the man is a natural healer. He asked me quite interesting questions about my MS and said he would send me some homeopathic prescriptions. I thanked him, yet since I never believed in alternative medicine, I told him politely that had no intentions to use it.
He said "fine, but do you agree to listen to some sounds?" I asked "what kind of sounds" and he said, "just a series of sounds" . He was so nice so I agreed. He asked my daughter to enter a website and download some files. After that he put on my headset and he played a strange series of sounds.
It was weird. He asked me to listen again to the same sounds for 15 minutes before I retire to bed and I did as he said.
I woke up the next morning and I felt a very strange sensation in my left leg . I thought I was dreaming because at that time I have already lost all sensations in both legs. After anther ten minutes it came to my mind that I am actually feeling my leg. I called my daughter's room to tell her the news and she said "maybe it's those sounds you were listening to last night". I said "I don't know, all I know is that I can feel my leg again."
That was two months ago. I kept listening to my sounds and have added some other series. I regained about 60% of my legs' sensation and some small motion. I cannot walk because of my weak muscles.
This kind of effect of sounds is that last think I could think of as an aid for my MS. This sounds website is called Healtone. Besides MS, it has many kinds of sounds for many conditions.
My doctor says it is a mere coincidence and that along with relapses there are sometimes also some periodic improvements in MS symptoms.
I wonder what you have to say about all that.
Regards,
Doug Barth
I live with my daughter's family. Two months ago they invited another couple to stay for the weekend.
We had dinner together and it appears that the man is a natural healer. He asked me quite interesting questions about my MS and said he would send me some homeopathic prescriptions. I thanked him, yet since I never believed in alternative medicine, I told him politely that had no intentions to use it.
He said "fine, but do you agree to listen to some sounds?" I asked "what kind of sounds" and he said, "just a series of sounds" . He was so nice so I agreed. He asked my daughter to enter a website and download some files. After that he put on my headset and he played a strange series of sounds.
It was weird. He asked me to listen again to the same sounds for 15 minutes before I retire to bed and I did as he said.
I woke up the next morning and I felt a very strange sensation in my left leg . I thought I was dreaming because at that time I have already lost all sensations in both legs. After anther ten minutes it came to my mind that I am actually feeling my leg. I called my daughter's room to tell her the news and she said "maybe it's those sounds you were listening to last night". I said "I don't know, all I know is that I can feel my leg again."
That was two months ago. I kept listening to my sounds and have added some other series. I regained about 60% of my legs' sensation and some small motion. I cannot walk because of my weak muscles.
This kind of effect of sounds is that last think I could think of as an aid for my MS. This sounds website is called Healtone. Besides MS, it has many kinds of sounds for many conditions.
My doctor says it is a mere coincidence and that along with relapses there are sometimes also some periodic improvements in MS symptoms.
I wonder what you have to say about all that.
Regards,
Doug Barth
We tried some AIT on our oldest, who is on the autism spectrum. He kind of liked the music, but I don't think it did anything for him.
E
E
Jen brings up a good point. Given your history and apparent age I "assumed" you had PPMS. Please let me know if I was wrong.
Quix
Quix
Doug, which flavor of MS do you have?
The brain is an amazing place, and it can spontaneously heal on its own. Especially when dealing with MS, as it can shut systems down which then heal and return on their own. Which makes it a prime candidate for charlatans!
Four months ago, I had a mini flare which took away some of the mobility in my right hand and leg. Today, the leg is back, although a little shrunken, and my hand works again, but with a little spasticity.
The brain is an amazing place, and it can spontaneously heal on its own. Especially when dealing with MS, as it can shut systems down which then heal and return on their own. Which makes it a prime candidate for charlatans!
Four months ago, I had a mini flare which took away some of the mobility in my right hand and leg. Today, the leg is back, although a little shrunken, and my hand works again, but with a little spasticity.
As a physician who has experimented with a number of alternative therapies (personally and before my MS) I feel that trying an inexpensive therapy, or one that offers no harm is a wonderful thing to do. If the therapy really does help, in whatever way, then wow! But, if the effects are "placebo" (which is a physiologic manifestation of "hope") then really, who cares? In a neurological state like yours, where conventional medicine offers little but palliative care, improvement of any kind , perceived or real, is still very nice. If this is a remission then, is it coincidence or triggered by the sounds - again I wouldn't care.
Eventually you will know if the effect is reproducible - occurs again or is sustained as you use it more. I think it's wonderful.
The harm comes when the treatments are very expensive and designed to line someone's pocket without regard to whether they help you or if they demand that you go off therapy with some proven benefit. But you're in a position to look at other approaches, both in the hope they can improve your conditon or your quality of life.
Have you looked at Low Dose Naltrexone? It has many believers as far as improvement of quality of life, fewer believers that it really affects the true course of MS. It is limited , though to those not needing narcotic,and some other, meds for pain relief. It's being studied right now at Univ. of Calif San Francisco in combination with an Interferon for RRMS, but the study is very, very short.
Anyway, in your situation, I say go for it!
Quix, MD (unofficial and not a Neurologist!)
Eventually you will know if the effect is reproducible - occurs again or is sustained as you use it more. I think it's wonderful.
The harm comes when the treatments are very expensive and designed to line someone's pocket without regard to whether they help you or if they demand that you go off therapy with some proven benefit. But you're in a position to look at other approaches, both in the hope they can improve your conditon or your quality of life.
Have you looked at Low Dose Naltrexone? It has many believers as far as improvement of quality of life, fewer believers that it really affects the true course of MS. It is limited , though to those not needing narcotic,and some other, meds for pain relief. It's being studied right now at Univ. of Calif San Francisco in combination with an Interferon for RRMS, but the study is very, very short.
Anyway, in your situation, I say go for it!
Quix, MD (unofficial and not a Neurologist!)
Hi Heather,
Wow, it's been so long since I even thought about it. This was when my girls were in preschool, and now they're 19! I didn't use the internet much back then. (As an aside to another post, I used to get motion sickness from the Prodigy program, anybody remember that? So I had to quit using the computer because I couldn't figure out how to get the screen to stop scrolling! Ay yi yi!)
Anyway, I went and looked it up and I guess AIT is still out there. I found this link:
http://www.auditoryintegration.net/
The girls' teacher was trained in it, and she told me about the undoing of the treatment if the girls were to ever use headphones. I don't remember why....
I'm glad we didn't have it done, because as the years went on, their hearing was so super sharp that they could hear sirens before and after you or I could. It was a horrifically frightening experience for them, with screams of dismay~~ so dh and I got them some -ahem- headphones at the hardware store so they could muffle the sounds. They would even sleep with the windows shut in the summer just in case a siren went by (try screams x 2 at 3AM!)
Or try racing for the house for the headphones if we were outside playing, and a siren went by......!!
Eventually we decided enough was enough and we weaned them off the headphones. What a process.....
The girls still get upset by sirens, BUT, yahooo, last summer, first ever, and they are 19 as I said, they slept with the windows open in the summer. Only now they have the white noise of a fan on all night to hopefully allow all of us to get some rest.
Doug, if you've read this, I am so glad to hear that you are getting feeling back in your legs. If it has worked, then so be it, it has worked. No matter what your dr. says, you can show him otherwise!
Praise God!
Suzanne
Wow, it's been so long since I even thought about it. This was when my girls were in preschool, and now they're 19! I didn't use the internet much back then. (As an aside to another post, I used to get motion sickness from the Prodigy program, anybody remember that? So I had to quit using the computer because I couldn't figure out how to get the screen to stop scrolling! Ay yi yi!)
Anyway, I went and looked it up and I guess AIT is still out there. I found this link:
http://www.auditoryintegration.net/
The girls' teacher was trained in it, and she told me about the undoing of the treatment if the girls were to ever use headphones. I don't remember why....
I'm glad we didn't have it done, because as the years went on, their hearing was so super sharp that they could hear sirens before and after you or I could. It was a horrifically frightening experience for them, with screams of dismay~~ so dh and I got them some -ahem- headphones at the hardware store so they could muffle the sounds. They would even sleep with the windows shut in the summer just in case a siren went by (try screams x 2 at 3AM!)
Or try racing for the house for the headphones if we were outside playing, and a siren went by......!!
Eventually we decided enough was enough and we weaned them off the headphones. What a process.....
The girls still get upset by sirens, BUT, yahooo, last summer, first ever, and they are 19 as I said, they slept with the windows open in the summer. Only now they have the white noise of a fan on all night to hopefully allow all of us to get some rest.
Doug, if you've read this, I am so glad to hear that you are getting feeling back in your legs. If it has worked, then so be it, it has worked. No matter what your dr. says, you can show him otherwise!
Praise God!
Suzanne
I bought on eBay one of those 'beach sounds' CDs, in hopes of inducing better sleep. Alas, it just annoyed me. I find that yoga breathing and visualizations work better, but nothing works all the time.
ess
ess
I did read something recently in Women's Health or one of those mags that said music is helpful in just an overall sense--makes workouts more effective, helps to relax, etc. Remember back when "Chant" was a big deal CD? I don't believe I ever heard more than the first three chants, because I always fell asleep listening to it. I have it in my iPod now, along with a bunch of those relaxation CDs you buy at the kiosk at Target, and I resort to the "Sleep" playlist when I'm having trouble.
So, while I don't believe sounds can affect chronic diseases as such, I do believe that using music or sound to stimulate, inspire, or relax can contribute to our overall well-being. Of course, that's no great insight on my part, or why would there be music therapists?
Doug, I hope you continue to do better.
So, while I don't believe sounds can affect chronic diseases as such, I do believe that using music or sound to stimulate, inspire, or relax can contribute to our overall well-being. Of course, that's no great insight on my part, or why would there be music therapists?
Doug, I hope you continue to do better.
I don't get it...."couldn't wear headphones again, as it would undo whatever help it gave them." Really? Very interesting...how did you find all this stuff out.
I am interested in what you have to say Suzanne...so don't think I am pulling your leg.
Heather
I am interested in what you have to say Suzanne...so don't think I am pulling your leg.
Heather
This sounds like the Auditory Integration Therapy that was recommended to us for our autistic daughters many years ago. (They have auditory hypersensitivity).
Back then treatment would not be covered under insurance and would be expensive x 2 for twins. We did not do it, I never even considered it. But the idea was that once they had the sounds treatments, they could never wear headphones again, as it would "undo" whatever help it gave them.
Suzanne
Back then treatment would not be covered under insurance and would be expensive x 2 for twins. We did not do it, I never even considered it. But the idea was that once they had the sounds treatments, they could never wear headphones again, as it would "undo" whatever help it gave them.
Suzanne
I went to the Website that Doug mentioned and it costs $14.95 just to "download the sounds."
Just thought you would like to be advised. Nothing personal Doug, just informing our members....
Just thought you would like to be advised. Nothing personal Doug, just informing our members....
I am very happy for you if your MS is improving. But I agree with your doctor that sounds cannot affect the progress of MS one way or another. Sometimes people are so desperate that they will try any remedy and pay any price, and this is where swindlers can step in. It seems as though this experiment has not cost you anything, for which I'm glad.
Please join in our forum and tell us about yourself. You are most welcome.
Best wishes,
ess
Please join in our forum and tell us about yourself. You are most welcome.
Best wishes,
ess
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