Kim and I celebrated our 27th wedding anniversary last week.
It was a year ago today that I first noticed speech difficulties a week after getting my annual flu shot at work. A lot has changed in that year!
My six month ALS diagnosis anniversary is next week.
I have experienced a continued general degradation in my speech and swallowing during the year. It is very difficult for me to talk and be understood by anyone these days. I am experiencing fairly severe muscle spasms all over my body. I don't sleep very well at night because I have trouble finding a position where I can breathe comfortably with my sinus allergies/ALS symptoms. Some days I feel like my hands and legs are weaker, other days I feel normal.
I met with the Department of Labor and Industry (L&I) Office of Vocational Rehabilitation (OVR) this week to talk about getting a communications board tablet computer and software that has pics/text to speech capabilities to help me with my verbal communications. Also sent an email to Baker HR to request an accommodation to help pay for the device and software.
I started doing morning Tai Chi/Qigong exercises before work to provide stretching, strengthening, energy, and improved breathing. I still do some walking on the treadmill, but not as intense or as long as I used to. I ordered a PowerLung device this week to strengthen my lungs and diaphragm and started doing breath stacking exercises to help also. My Forced Vital Capacity (FVC, measure of lung/breathing health) went down some in my second ALS clinic in September, so I want to do some exercises to keep it from worsening, and hopefully see an improvement at my third clinic in December.
I've been taking Chinese Herbs and doing intense acupuncture therapy for ALS for 6 weeks. I have been on the Deanna Protocol of nutritional supplements for ALS for 2 weeks. The Deanna Protocol suggests ingesting 12 Tbsps of coconut oil every day, but I have had difficulty ingesting 2 Tbsps. I ordered a case of Fuel for Thought (F2T), which provides the equivalent of 15 Tbsps of coconut oil daily in a 2-serving 2.5 oz bottle and I am on day 4. Can't drink it straight, but I am getting it down. F2T is currently being researched for Alzheimer's treatment and has shown benefits for most neurological conditions by providing energy for healthy brain and nerve function.
I hope to see some significant DP benefits by week 4!
Jean, Kelly and Liam are visiting us this weekend and we are going to see Cirque du Soleil Varekai at the Giant Center this afternoon. Should be fun!
NO WHITE FLAGS!
Showing posts with label Chinese herbs. Show all posts
Showing posts with label Chinese herbs. Show all posts
Saturday, November 1, 2014
Sunday, October 5, 2014
Normal Acupuncture vs. Intense Acupuncture
I've been discussing my extreme acupuncture for the treatment of ALS, and apparently I have made some people who have considered medical acupuncture for the treatment of pain or allergies uncomfortable and reconsider acupuncture as the means to help them with their problem. Several of you have contacted me saying that after reading my blog you will no longer consider acupuncture.
Please let me set the record straight. I am using the terminology "intense acupuncture" to refer to the treatment that my doctor is providing to combat my ALS disease. 99.999% of people who receive treatment from a qualified acupuncture medical doctor will NEVER receive any of the treatments I am blogging about. This is a life and death procedure I am attempting, NOT standard acupuncture.
My first few sessions with my medical acupuncturist focused on relieving some of my symptoms such as chronic allergies/sinusitis, TMJ pain, muscle spasms, etc. The doctor used the standard, very thin, solid acupuncture needles for these treatment sessions. Standard acupuncture needles are very thin and not hollow like a hypodermic needle, that is why they don't hurt when inserted.
Twirling the needles once inserted or moving them up and down to stimulate the acupressure point can sometimes be a little uncomfortable, but the discomfort is minor.
Most Chinese herbs dispensed by acupuncture medical doctors in the U.S. come packaged in pill form (see previous picture on my blog of the back of one of these boxes). Because the herbs used to treat ALS are not that commonly dispensed, my doctor is growing them and preparing them especially for me. As a result, they are not in pill form and must be ingested. Yes, they taste and smell terrible. But if there is a 10% chance of slowing my ALS progression, it is worth it,
Millions of people in the U.S. seek acupuncture treatment for a variety of ailments. The number grows every year as the cost of other medical treatments and drugs continue to increase. Acupuncture has no side effects unlike most prescription medicines advertised in magazines and on TV with side effects like death, blindness, diabetes, stroke, etc. Acupuncture is very safe, and has been used in China and other far eastern cultures for thousands of years and people are more likely to see an acupuncturist than a medical doctor for treatment.
So, if you have considered acupuncture but have been dissuaded by reading my blog, give acupuncture a try! It is a very effective treatment for many medical issues, and especially for chronic pain. Find a good medical acupuncture doctor. My wife's coworker recommended Dr. Williams based on her own successful treatment.
The extreme acupuncture I am writing about is for treatment of ALS. I did some research online about acupuncture and ALS, and nobody reported any ill effects from their acupuncture treatment. However, only a few PALS felt that it really helped them with their ALS condition.
I asked my doctor about a medical article regarding acupuncture coupled with injection therapy at the acupuncture sites with a homeopathic substance called Enercel. Dr. Williams checked them out and indicated she didn't think it was worth trying.
She did some research on Chinese treatments for ALS by contacting one of her grandfather's acupuncture students in China (now in his 80's), who provided her with a medical treatment article involving a small number of Chinese patients treated with extreme acupuncture over a several month period combined with Chinese herbs. Most people in the Chinese study were treated on a daily basis, whereas I am being treated three times a week following a similar regimen. According to the article, more than half of the treated PALS reported improvements in their condition, with several reportedly being completely cured.
I apologize if I confused the issue about normal acupuncture and my extreme acupuncture. They are entirely different. If you have considered trying acupuncture for a health condition, I strongly recommend that you try it!
Thanks for reading!
Please let me set the record straight. I am using the terminology "intense acupuncture" to refer to the treatment that my doctor is providing to combat my ALS disease. 99.999% of people who receive treatment from a qualified acupuncture medical doctor will NEVER receive any of the treatments I am blogging about. This is a life and death procedure I am attempting, NOT standard acupuncture.
My first few sessions with my medical acupuncturist focused on relieving some of my symptoms such as chronic allergies/sinusitis, TMJ pain, muscle spasms, etc. The doctor used the standard, very thin, solid acupuncture needles for these treatment sessions. Standard acupuncture needles are very thin and not hollow like a hypodermic needle, that is why they don't hurt when inserted.
Twirling the needles once inserted or moving them up and down to stimulate the acupressure point can sometimes be a little uncomfortable, but the discomfort is minor.
Most Chinese herbs dispensed by acupuncture medical doctors in the U.S. come packaged in pill form (see previous picture on my blog of the back of one of these boxes). Because the herbs used to treat ALS are not that commonly dispensed, my doctor is growing them and preparing them especially for me. As a result, they are not in pill form and must be ingested. Yes, they taste and smell terrible. But if there is a 10% chance of slowing my ALS progression, it is worth it,
Millions of people in the U.S. seek acupuncture treatment for a variety of ailments. The number grows every year as the cost of other medical treatments and drugs continue to increase. Acupuncture has no side effects unlike most prescription medicines advertised in magazines and on TV with side effects like death, blindness, diabetes, stroke, etc. Acupuncture is very safe, and has been used in China and other far eastern cultures for thousands of years and people are more likely to see an acupuncturist than a medical doctor for treatment.
So, if you have considered acupuncture but have been dissuaded by reading my blog, give acupuncture a try! It is a very effective treatment for many medical issues, and especially for chronic pain. Find a good medical acupuncture doctor. My wife's coworker recommended Dr. Williams based on her own successful treatment.
The extreme acupuncture I am writing about is for treatment of ALS. I did some research online about acupuncture and ALS, and nobody reported any ill effects from their acupuncture treatment. However, only a few PALS felt that it really helped them with their ALS condition.
I asked my doctor about a medical article regarding acupuncture coupled with injection therapy at the acupuncture sites with a homeopathic substance called Enercel. Dr. Williams checked them out and indicated she didn't think it was worth trying.
She did some research on Chinese treatments for ALS by contacting one of her grandfather's acupuncture students in China (now in his 80's), who provided her with a medical treatment article involving a small number of Chinese patients treated with extreme acupuncture over a several month period combined with Chinese herbs. Most people in the Chinese study were treated on a daily basis, whereas I am being treated three times a week following a similar regimen. According to the article, more than half of the treated PALS reported improvements in their condition, with several reportedly being completely cured.
I apologize if I confused the issue about normal acupuncture and my extreme acupuncture. They are entirely different. If you have considered trying acupuncture for a health condition, I strongly recommend that you try it!
Thanks for reading!
Tuesday, September 30, 2014
Intense Acupuncture, Week 3
On Friday, I lay on my back and we punctured my toes, the inside of my cheek, and under my tongue to bleed me with a large bore hypodermic needle. Then we focused on my neck area.
She also gave me the formulated Chinese herbs I had been waiting for in a pickle jar with the instructions to take twice a day after eating, morning and evening. They are coarsely ground and look kind of like sea oats. To be sure that I wasn't allergic, she asked me to start with a teaspoon Friday night, and then a heaping tablespoon for each subsequent dose if I wasn't allergic.
She warned me it wouldn't taste good, and it was okay if I mixed it with orange juice. It smelled horrible, and tasted significantly worse!!! I didn't have any OJ Friday night so tried adding to cranberry juice. It was lumpy, smelled terrible, and I had a terrible time swallowing it. It took me about 15 minutes to work up the courage to try it. I ended up with whole pieces of bitter and pungent herbs in my mouth and I actually vomited part of it back up it was so terrible.
Saturday morning I took two loads of stuff from the basement to the Salvation Army and got some OJ on the way back. It was better when I mixed it with OJ as she suggested and ground it up in my NutriBullet, but I still didn't have the liquid/herbs mix correct, so there were chunks left at the bottom of the glass that I couldn't swallow and stayed in my mouth and almost made me throw up again.
Fortunately, in a few days I have gotten better at the consistency and quantity of juice that is required to grind it up in my NutriBullet and get it down quickly and in a single breath. If I have to come up for air and then swallow the rest of it, the taste is horrendous. I told Kim on Saturday that it was like trying to eat vomit! I now have a glass of water and some mouthwash standing by to get the taste out of my mouth as quickly as possible. The smell when I open the jar doesn't make me gag anymore, so I guess I am adjusting. I will finish the last of what she gave me tomorrow morning and she will have more for me when I see her tomorrow.
On Monday, I lay on my stomach and we did the "mosquite bites" procedure on my upper back, where she jabs me very quickly many times with a regular hypodermic needle to get my back to bleed. I could feel the rivulets of blood on my back and some ran down the side of my neck.
She followed this up with heavy duty suction devices and left 3 large "pepperoni" marks on my back, two on the right side of my spine and one on my neck. They hurt a lot worse today than they did yesterday. Then she had me flip me over on my back again, worked on my neck to try to affect my speech, swallowing, and jaw muscles, then pricked my fingers, and vigorously massaged my ears to affect all of the acupressure points.
No noticeable differences yet, although my swallowing seems slightly better. It is still taking me longer and longer to get through a meal. Hopefully after a few weeks of being on the herbs and the intense acupuncture we will start to see a difference! Keep those prayers coming!
She also gave me the formulated Chinese herbs I had been waiting for in a pickle jar with the instructions to take twice a day after eating, morning and evening. They are coarsely ground and look kind of like sea oats. To be sure that I wasn't allergic, she asked me to start with a teaspoon Friday night, and then a heaping tablespoon for each subsequent dose if I wasn't allergic.
She warned me it wouldn't taste good, and it was okay if I mixed it with orange juice. It smelled horrible, and tasted significantly worse!!! I didn't have any OJ Friday night so tried adding to cranberry juice. It was lumpy, smelled terrible, and I had a terrible time swallowing it. It took me about 15 minutes to work up the courage to try it. I ended up with whole pieces of bitter and pungent herbs in my mouth and I actually vomited part of it back up it was so terrible.
Saturday morning I took two loads of stuff from the basement to the Salvation Army and got some OJ on the way back. It was better when I mixed it with OJ as she suggested and ground it up in my NutriBullet, but I still didn't have the liquid/herbs mix correct, so there were chunks left at the bottom of the glass that I couldn't swallow and stayed in my mouth and almost made me throw up again.
Fortunately, in a few days I have gotten better at the consistency and quantity of juice that is required to grind it up in my NutriBullet and get it down quickly and in a single breath. If I have to come up for air and then swallow the rest of it, the taste is horrendous. I told Kim on Saturday that it was like trying to eat vomit! I now have a glass of water and some mouthwash standing by to get the taste out of my mouth as quickly as possible. The smell when I open the jar doesn't make me gag anymore, so I guess I am adjusting. I will finish the last of what she gave me tomorrow morning and she will have more for me when I see her tomorrow.
On Monday, I lay on my stomach and we did the "mosquite bites" procedure on my upper back, where she jabs me very quickly many times with a regular hypodermic needle to get my back to bleed. I could feel the rivulets of blood on my back and some ran down the side of my neck.
She followed this up with heavy duty suction devices and left 3 large "pepperoni" marks on my back, two on the right side of my spine and one on my neck. They hurt a lot worse today than they did yesterday. Then she had me flip me over on my back again, worked on my neck to try to affect my speech, swallowing, and jaw muscles, then pricked my fingers, and vigorously massaged my ears to affect all of the acupressure points.
No noticeable differences yet, although my swallowing seems slightly better. It is still taking me longer and longer to get through a meal. Hopefully after a few weeks of being on the herbs and the intense acupuncture we will start to see a difference! Keep those prayers coming!
Tuesday, September 23, 2014
Intense Acupuncture, Round 2 - No Pain, No Gain
I count myself very fortunate to have found a true Chinese acupuncture medical doctor. Last week we started a 3-day a week regimen. Instead of splitting her time working with 2-3 other patients simultaneously, she works with me for a solid hour. Oh, and she sees me on Wednesdays, which is her day off. Dr. Williams truly cares about her patients, and she is really trying to help me.
We haven't pricked fingers and toes again since my first two sessions, but she does prick under my tongue every visit with a large bore needle to get it to bleed. Today the last two were brutal. There were tears running from my eyes, and I may have grunted once, but I bore it stoically and gratefully. It hurt to eat tonight, and it hurts now. Ice cream helps some. :)
She works all of the needles hard, twirling them as well as bouncing them up and down. They hurt a fair amount, but the pain is worth it. Since the needles are often right on the nerve, twirling them or moving them up and down can cause jolts of sensation. I do bleed some. She asked me to stop taking baby aspirin for my high blood pressure to hopefully cause less bleeding.
On Friday last week, she indicated we were going to work on my swallowing. It involved a lot of needles in my scalp and neck, both front and back. It feels like one of the needles goes in very deep into my neck.
Guess what! My swallowing reflex was better over the weekend! I was able to swallow some of the larger vitamins that I hadn't been able to swallow for several weeks. I was also able to keep my full mouth guard in overnight, which I hadn't been able to do for several weeks.
We did another swallowing treatment again today, so I am anxious to see if I have additional improvement. I told her my speech was worse today, so she said we would work on it. Tonight I thought she was trying to drill them through the side of my skull. I think that was probably working on my verbal center. I'll be very interested to see what happens tomorrow morning.
Dr. Williams indicated the Chinese herbs should be ready on Friday. She indicated I probably wouldn't like the taste, but I will take my medicines with a smile.
She also suggested Tai Chi and Qi Gong exercises in addition to some hand exercises and finger rubs on the head to stimulate all of the acupressure points in the hands and scalp. I started with a Tai Chi DVD this morning and plan to continue every morning before work. The slow movements, coupled with deep breathing, should help me with flexibility, muscle strength, breathing, and stress.
I go back to acupuncture again tomorrow at lunchtime and again Friday. I have high hopes! It truly is a case of No Pain, No Gain! Can't wait to start the Chinese herbs and see what affect they may have.
Thanks for caring, and thanks for reading!
We haven't pricked fingers and toes again since my first two sessions, but she does prick under my tongue every visit with a large bore needle to get it to bleed. Today the last two were brutal. There were tears running from my eyes, and I may have grunted once, but I bore it stoically and gratefully. It hurt to eat tonight, and it hurts now. Ice cream helps some. :)
She works all of the needles hard, twirling them as well as bouncing them up and down. They hurt a fair amount, but the pain is worth it. Since the needles are often right on the nerve, twirling them or moving them up and down can cause jolts of sensation. I do bleed some. She asked me to stop taking baby aspirin for my high blood pressure to hopefully cause less bleeding.
On Friday last week, she indicated we were going to work on my swallowing. It involved a lot of needles in my scalp and neck, both front and back. It feels like one of the needles goes in very deep into my neck.
Guess what! My swallowing reflex was better over the weekend! I was able to swallow some of the larger vitamins that I hadn't been able to swallow for several weeks. I was also able to keep my full mouth guard in overnight, which I hadn't been able to do for several weeks.
We did another swallowing treatment again today, so I am anxious to see if I have additional improvement. I told her my speech was worse today, so she said we would work on it. Tonight I thought she was trying to drill them through the side of my skull. I think that was probably working on my verbal center. I'll be very interested to see what happens tomorrow morning.
Dr. Williams indicated the Chinese herbs should be ready on Friday. She indicated I probably wouldn't like the taste, but I will take my medicines with a smile.
She also suggested Tai Chi and Qi Gong exercises in addition to some hand exercises and finger rubs on the head to stimulate all of the acupressure points in the hands and scalp. I started with a Tai Chi DVD this morning and plan to continue every morning before work. The slow movements, coupled with deep breathing, should help me with flexibility, muscle strength, breathing, and stress.
I go back to acupuncture again tomorrow at lunchtime and again Friday. I have high hopes! It truly is a case of No Pain, No Gain! Can't wait to start the Chinese herbs and see what affect they may have.
Thanks for caring, and thanks for reading!
Monday, September 15, 2014
Intense Acupuncture
Today was a busy day. First day back at work after vacation. Roofers started putting a new roof on our house. Continued working on updating my blog with vacation stories and photos.
And I started an intensive acupuncture program to see if it will help me combat ALS. My doctor studied with her father in China, and there was an acupuncture/Chinese herb treatment that purportedly helped some people in China. It was a small study, only 47 people. The information was provided to my doctor by another pupil of her grandfather, who is still in China and now in his 80's. According to the medical study (in Chinese), more than half of the treated group lived more than 10 years. More than half of the group showed some level of improvement in their condition.
Part of the treatment involves pricking and bleeding, coupled with traditional acupuncture, Chinese exercises, and Chinese herbs. She will have to formulate the herbs, so they won't be available until next week. She pricked my paralyzed tongue numerous times to bleed it. She pricked my back along my spine somewhere between 60-100 times to bleed it and vigorously massaged some liquid compound into it. She told me it would bruise, and it did. She pricked each of my toes twice, once on each side of the nail to bleed them, and I flinched a lot more when she was doing that than when she did my back. When I go back on Wednesday she will prick my fingers instead of my toes. I had about 8-9 needles in my scalp along the central meridian plus the usual ones in my feet, legs, and thumbs.
No pain, no gain! Kim and I think it is worth the time and cost to see if it will work. We have to pay out of pocket since she doesn't accept insurance, and it is not cheap. However, if I can extend my life, improve my speech/swallowing, or slow the spread of the disease to the rest of my body, it will be worth every penny.
The article in this past Sunday's paper talked about ALS and the Brainstorm study. They indicated that the stem cell therapy would likely have to be repeated several times a year, not a once and done treatment, which I didn't know.
And I started an intensive acupuncture program to see if it will help me combat ALS. My doctor studied with her father in China, and there was an acupuncture/Chinese herb treatment that purportedly helped some people in China. It was a small study, only 47 people. The information was provided to my doctor by another pupil of her grandfather, who is still in China and now in his 80's. According to the medical study (in Chinese), more than half of the treated group lived more than 10 years. More than half of the group showed some level of improvement in their condition.
Part of the treatment involves pricking and bleeding, coupled with traditional acupuncture, Chinese exercises, and Chinese herbs. She will have to formulate the herbs, so they won't be available until next week. She pricked my paralyzed tongue numerous times to bleed it. She pricked my back along my spine somewhere between 60-100 times to bleed it and vigorously massaged some liquid compound into it. She told me it would bruise, and it did. She pricked each of my toes twice, once on each side of the nail to bleed them, and I flinched a lot more when she was doing that than when she did my back. When I go back on Wednesday she will prick my fingers instead of my toes. I had about 8-9 needles in my scalp along the central meridian plus the usual ones in my feet, legs, and thumbs.
No pain, no gain! Kim and I think it is worth the time and cost to see if it will work. We have to pay out of pocket since she doesn't accept insurance, and it is not cheap. However, if I can extend my life, improve my speech/swallowing, or slow the spread of the disease to the rest of my body, it will be worth every penny.
The article in this past Sunday's paper talked about ALS and the Brainstorm study. They indicated that the stem cell therapy would likely have to be repeated several times a year, not a once and done treatment, which I didn't know.
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