After struggling for months to be understood, Kim and I decided that I should buy a new iPad tablet and software to allow me to communicate. It was becoming very frustrating for both of us to not be able to understand my unintelligible speech. I tried to find something that would work on my old iPad 1, but since it wouldn't upgrade to iOS 7, it doesn't download new programs and many of my old programs crash regularly. At this point it is really only useful for emails and storing music and photos.
I was able to find an iPad Air on sale and researched available Augmentative and Alternative Communication (AAC) software. Schanzenbach had originally recommended Proloquo2Go, which uses symbol grids to communicate, but I felt it was targeted more at children and people without the ability to type. I looked at Proloquo4Text, and decided to try it. It allows me to configure and "bank" different shortcuts for commonly used words, phrases, etc. and has a pretty good word/phrase prediction engine. Now I just need to become a better and faster typist!
I also bought a protective case with a Bluetooth keyboard and an external Bluetooth speaker to boost the volume and clarity of the AAC device, which will work up to 30' away. I am still getting used to my new AAC capabilities and having some difficulty with the small Bluetooth keyboard and being able to type quickly enough to carry on a conversation.
I tried a couple of phone calls this week using the speakerphone and my external speaker with limited success - I need more experience. When I called Kim the first time and didn't hit the Play button quickly enough, she hung up on me. When I redialed and she picked up and heard an electronic voice asking her questions, she asked "WHO IS THIS!?". She figured it out when I started laughing.
I have a few presentations and meetings in the next few weeks, so I am hopeful to see some improvements this week as I gain familiarity and get things set up in the software to be more efficient. I forgot my iPad on Friday and tried to use my iPad 4s phone in my afternoon meeting, but quickly got frustrated with the tiny iPhone keyboard.
I finally asked for a disability accommodation at work and they put me in touch with a CIGNA assistive technology and ergonomics specialist who is now working to try to find a good solution for me to use at work that may be more portable than my larger iPad Air. She also indicated she could do an ergonomics evaluation of my office to determine if there is anything they can do to help me be more comfortable. Since I started having some shoulder and neck pain in the afternoons and evenings this week, I plan to ask her to perform the ergonomics study.
It has been a week since my last acupuncture treatment. I still have some deep bruises on my legs from the last treatment I received. I am not missing the painful treatments or Chinese herbs!
My muscle spasms are still pretty bad. I started taking Baclofen a week ago to see if that would help but haven't noticed any improvement yet. I am taking half a tablet 2-3 times a day and can go up to a maximum of 3 tablets a day. It can cause drowsiness, so I am cautious about increasing too much right away.
I saw my internal medicine doctor for the last time last week. He is leaving the practice at the end of the year after 21 years as he is tired of the daily grind of seeing 25 patients every day and the ever increasing workload that has to be taken care of outside the office on evenings and weekends. One thing he did was prescribe a nasal steroid, Flonase, to get me off Afrin to see if it will help me breathe better at night. I can't sleep on one side all night long like I used to and usually end up sleeping propped up in bed in a sitting position for an hour or more every night until my sinuses clear up enough to be able to lie flatter again. I'm not sure if that is the cause of my neck and muscle pain or if it is an ALS symptom.
I ordered some magnesium chloride from Amazon last week as well as some books, including "Eric is Winning" and "The ALS Diet". It had been on my list of ALS treatments to research since several PALS on the Inspire website indicate it has helped them. It can be ingested as well as applied to the skin, both of which may help with symptoms.
Kim and I are in State College this weekend visiting Jean and Kelly. I went to Wegman's on Saturday to get some sushi and do some grocery shopping for Jean since her car is at the garage. I ran into my friend Patty B. who works there and she was very kind and gave me lots of hugs as we met each other different places throughout the store. She reminded me that I haven't updated my blog much recently, so thank Patty for this blog posting. I hope to see Patty and Eric over the Christmas holidays while we are in State College. I also got Ellen and Bob's email from Jean so that I can thank them for sending me so many wonderful and uplifting cards.
We ordered out a Home Delivery Pizza last night. I tried my first gluten free pizza crust, and was very disappointed. It was tasteless and didn't have a nice texture. No seasonings, which would have made it better. Couldn't taste the pizza sauce. Although it can be a lot of work, I think we need to make our own gluten free pizza crust. I'm not ready to give up on pizza in my diet! I tried some Udi's gluten free cinnamon raisin bread this morning, and it was pretty good.
I made some decent beef stew late last week and we had that for dinner Friday night. I only had London Broil in the freezer, so the meat was a little tougher than what I would normally use. It is a good meal for a cold day, and we'll be eating more of it this week in response to the blast of frigid air coming our way.
I guess the final bit of news I'll leave you with is that an independent writer for a local magazine contacted me about a week ago to ask if I would answer some questions for an article about ALS that the editor wants to include in the December edition. I sent her my answers to the last of her questions yesterday and am waiting to see if she has any follow up questions this week. I look forward to reading the completed article!
Showing posts with label Acupuncture. Show all posts
Showing posts with label Acupuncture. Show all posts
Sunday, November 16, 2014
Saturday, November 1, 2014
One Year Symptom Anniversary
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!
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!
Wednesday, October 8, 2014
Positive Mental Attitude
This can be a good day or a bad day - my choice.
I can be happy or sad - my choice.
I can complain or I can cope - my choice.
Life can be a chore or a challenge - my choice.
I can take from life or give to life - my choice.
If all things are possible,
How I deal with those possibilities is - my choice.
Steve Shackel
My speech continues to worsen. Even Kim and my boss Dave have a difficult time understanding what I am trying to communicate. I emailed OVR last night to see if they had received the report from Schanzenbach from my 9/17 meeting about getting a tablet and text/pictures to speech application and Nancy indicated no. She said she would follow up with them. I have had to resort to writing several things this week because people couldn't understand my speech - first time that has happened. I've had a difficult time lying on my stomach the last few times at acupuncture. My sinus allergies are so bad right now that I feel like I can't breathe after 2 minutes with my head down. On Friday she had me lie on my side so she could needle my back. Today I was able to tough it out for about 35 minutes before she flipped me over on my back to work on my neck for speech and swallowing issues. I drooled saliva the whole time - gross! Dr. Williams was a little disappointed that my speech and swallowing have gotten worse.
My order of Lunasin (natural soy supplement) should be here on Friday. I'm anxious to see if the pills will help my speech and swallowing as they have helped other people with Bulbar ALS.
I've been doing lots of research and communicating with other PALS to see what they are doing proactively to extend their lives and slow down the progression of their ALS. People are recommending a high fat, low carb Ketogenic diet and also a set of nutritional supplements referred to as the Deanna Protocol (DP), developed by a father for his daughter. The DP ingredients are expensive, but I am going to order a month's worth and see if it helps. DP also suggests some light exercise such as stretching, range of motion, etc. I've started doing Tai Chi and Qigong exercises in the morning which do both.
Everyone agrees that a Positive Mental Attitude (PMA) is the most important thing that a PALS can do to help themselves and their loved ones. Never give up hope, and always look at the bright side. The cup is half full, not half empty!
I can be happy or sad - my choice.
I can complain or I can cope - my choice.
Life can be a chore or a challenge - my choice.
I can take from life or give to life - my choice.
If all things are possible,
How I deal with those possibilities is - my choice.
Steve Shackel
"The longer we dwell on our misfortunes,
the greater is their power to harm us".Voltaire
the greater is their power to harm us".Voltaire
My speech continues to worsen. Even Kim and my boss Dave have a difficult time understanding what I am trying to communicate. I emailed OVR last night to see if they had received the report from Schanzenbach from my 9/17 meeting about getting a tablet and text/pictures to speech application and Nancy indicated no. She said she would follow up with them. I have had to resort to writing several things this week because people couldn't understand my speech - first time that has happened. I've had a difficult time lying on my stomach the last few times at acupuncture. My sinus allergies are so bad right now that I feel like I can't breathe after 2 minutes with my head down. On Friday she had me lie on my side so she could needle my back. Today I was able to tough it out for about 35 minutes before she flipped me over on my back to work on my neck for speech and swallowing issues. I drooled saliva the whole time - gross! Dr. Williams was a little disappointed that my speech and swallowing have gotten worse.
My order of Lunasin (natural soy supplement) should be here on Friday. I'm anxious to see if the pills will help my speech and swallowing as they have helped other people with Bulbar ALS.
I've been doing lots of research and communicating with other PALS to see what they are doing proactively to extend their lives and slow down the progression of their ALS. People are recommending a high fat, low carb Ketogenic diet and also a set of nutritional supplements referred to as the Deanna Protocol (DP), developed by a father for his daughter. The DP ingredients are expensive, but I am going to order a month's worth and see if it helps. DP also suggests some light exercise such as stretching, range of motion, etc. I've started doing Tai Chi and Qigong exercises in the morning which do both.
Everyone agrees that a Positive Mental Attitude (PMA) is the most important thing that a PALS can do to help themselves and their loved ones. Never give up hope, and always look at the bright side. The cup is half full, not half empty!
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.
Monday, August 18, 2014
Catching Up!
Wow, time flies when you are having fun! Sorry it has been so long since I last updated my blog. It has been a busy 2 weeks... Here's a summary.
FUN
We had a wonderful time with the Knudson Clan in Newland, NC from 8/8-8/13. You can see the pictures from our 5 days together on my Facebook Page under the Knudson Family Reunion 2014 Album. Thanks to Allyson Cooksey for allowing us to use her Cooksey Mountain House! I'll have a separate post just about the trip.
We did some planning for our September Knudson Men trip while we were together and have a basic itinerary for our road trip across Colorado:
Bucket List - We (Mel H and I) rescheduled our tandem skydiving to this coming Saturday morning. Hope to have better weather than 2 weekends ago when they called and cancelled. YIPPEE! Can't wait to freefall and then float down to the ground - a dream come true! I'll have a video to show that I actually did it. :)
MEDICAL
Went back to work on Thursday. Friday I had my second acupuncture treatment, and it seems to be helping some. The muscle spasms in my arms don't seem to be as constant and are of lesser strength. That is good, because the intense spasming will wear out my motor neurons faster. I go back again for my third treatment tomorrow (Tuesday) and will continue until I can't derive any more benefit.
I am seeing a Chinese medical doctor who specializes in acupuncture and has offices on both the east shore and west shore. She has suggested that I try some Chinese herbs also, but I need to consult with my doctor first. Some of the needles hurt, most don't. Dr. Williams figures out the placement, then taps the needle in. Usually that is the worst, but sometimes they hurt longer. She put four in my face/nose to try to improve my chronic sinusitis. It does seem to help someWhen she twirls the needles after 15-30 minutes that occasionally hurts. Friday I was there for over 90 minutes over my lunch hour and late to my afternoon meeting at the PA Turnpike Commission.
I went to the lab today to have blood drawn for the third time since starting on Rilutek/Riluzole. I started taking glycopyrrolate medicine last night because my salivation has increased over the past month, one of the ALS symptoms. Side effects include double vision and dizziness, so I am starting with a low dose to see how my body tolerates it and if I have any issues.
While in Newland, NC, I found out about the ALS Ice Bucket mania from my sister Amy. It is amazing how much money has been raised so quickly, all of it going for ALS research! Several of my friends have mentioned me (Andrea M.) or done it my name (Amy B., Jon C.). T HA N K Y O U!
Amy challenged me, so I went to Lowes and bought a 5-gallon bucket tonight. I will make another large donation and will have Kim videotape me when I dump the icy water over my head this week. My friend Karen M. is participating in a Walk to Defeat ALS in D.C.
If you are reading this, please accept my challenge to participate in the ALS Ice Bucket Challenge to raise awareness and funding for ALS research to defeat this terrible disease and help find treatments and a cure.
The Department of Labor and Industry Office of Vocational Rehabilitation is providing 5 hours of consulting to help with my speech issues. It is very challenging to be in the IT Consulting business and be successful as a Project Manager when you can't communicate verbally. I am meeting with Schanzenbach next Wednesday to start exploring assistive technologies.
WORK
Just two work items. The City of Charleston asked for a new PM for their stormwater project because they can't understand what I am saying when I talk on the phone. I don't blame them at all and respect their decision. I have a bad case of mush mouth. It has been a difficult project and I will be glad to pass the stress on to another Baker PM.
Some good news on the proposal I worked on last month, we were selected for negotiations, and I am the designated PM for the 18 month initiative.
Also working on my long term disability claim package for Northwestern Mutual. They ask for a lot of documentation, and I need to get documents to all of the doctors who I worked with (3) in the past few months. Paul advised that I would be better off filing the paperwork now whether I accept any disability payments any time soon or not since NMFN may pay my future insurance premiums.
Received a package from Gannett Fleming last week offering a one-time lump sum payout on my pension, so we will consolidate and roll that money over to NMFN. Will make it easier to have fewer but larger retirement income accounts for Kim and me and we'll have more control over the funding stream instead of the monthly payment from the pension plan.
FUN
We had a wonderful time with the Knudson Clan in Newland, NC from 8/8-8/13. You can see the pictures from our 5 days together on my Facebook Page under the Knudson Family Reunion 2014 Album. Thanks to Allyson Cooksey for allowing us to use her Cooksey Mountain House! I'll have a separate post just about the trip.
We did some planning for our September Knudson Men trip while we were together and have a basic itinerary for our road trip across Colorado:
- Thursday 9/4 - Dad and I arrive in Denver around 4:30PM, hope to have dinner with dad's Cousin Charlie and wife Helen. Chuck gets in around midnight.
- Friday 9/5 - Meet up with Chuck and have breakfast and spend the morning with Charlie and Helen. May try to visit the family cemetery and have our picture taken in front of Knudson Hall on the Denver University campus, named for Grandpa Clarence. We'll leave Friday afternoon and drive to Grand Junction.
- Saturday 9/6 - Visit Uncle Frank and Aunt Geneva Cooley and cousin Frank and wife Margie.
- Sunday 9/7 - Visit Uncle Frank and Aunt Geneva Cooley and cousin Frank and wife Margie. Drive to Crested Butte, CO in the afternoon.
- Monday 9/8 - Explore Crested Butte.
- Tuesday 9/9 - Explore Crested Butte. Leave in the afternoon to drive to Granby.
- Wednesday 9/10 - Enter Rocky Mountain National Park from the back entrance and drive the Trail Ridge Road to Estes Park for the night.
- Thursday 9/11 - Explore RMNP.
- Friday 9/12 - Drive back to Denver. Drop Chuck off at the airport. Visit with Charlie and Helen.
- Saturday 9/13 - Dad and I fly home.
Bucket List - We (Mel H and I) rescheduled our tandem skydiving to this coming Saturday morning. Hope to have better weather than 2 weekends ago when they called and cancelled. YIPPEE! Can't wait to freefall and then float down to the ground - a dream come true! I'll have a video to show that I actually did it. :)
MEDICAL
Went back to work on Thursday. Friday I had my second acupuncture treatment, and it seems to be helping some. The muscle spasms in my arms don't seem to be as constant and are of lesser strength. That is good, because the intense spasming will wear out my motor neurons faster. I go back again for my third treatment tomorrow (Tuesday) and will continue until I can't derive any more benefit.
I am seeing a Chinese medical doctor who specializes in acupuncture and has offices on both the east shore and west shore. She has suggested that I try some Chinese herbs also, but I need to consult with my doctor first. Some of the needles hurt, most don't. Dr. Williams figures out the placement, then taps the needle in. Usually that is the worst, but sometimes they hurt longer. She put four in my face/nose to try to improve my chronic sinusitis. It does seem to help someWhen she twirls the needles after 15-30 minutes that occasionally hurts. Friday I was there for over 90 minutes over my lunch hour and late to my afternoon meeting at the PA Turnpike Commission.
I went to the lab today to have blood drawn for the third time since starting on Rilutek/Riluzole. I started taking glycopyrrolate medicine last night because my salivation has increased over the past month, one of the ALS symptoms. Side effects include double vision and dizziness, so I am starting with a low dose to see how my body tolerates it and if I have any issues.
While in Newland, NC, I found out about the ALS Ice Bucket mania from my sister Amy. It is amazing how much money has been raised so quickly, all of it going for ALS research! Several of my friends have mentioned me (Andrea M.) or done it my name (Amy B., Jon C.). T HA N K Y O U!
Amy challenged me, so I went to Lowes and bought a 5-gallon bucket tonight. I will make another large donation and will have Kim videotape me when I dump the icy water over my head this week. My friend Karen M. is participating in a Walk to Defeat ALS in D.C.
If you are reading this, please accept my challenge to participate in the ALS Ice Bucket Challenge to raise awareness and funding for ALS research to defeat this terrible disease and help find treatments and a cure.
The Department of Labor and Industry Office of Vocational Rehabilitation is providing 5 hours of consulting to help with my speech issues. It is very challenging to be in the IT Consulting business and be successful as a Project Manager when you can't communicate verbally. I am meeting with Schanzenbach next Wednesday to start exploring assistive technologies.
WORK
Just two work items. The City of Charleston asked for a new PM for their stormwater project because they can't understand what I am saying when I talk on the phone. I don't blame them at all and respect their decision. I have a bad case of mush mouth. It has been a difficult project and I will be glad to pass the stress on to another Baker PM.
Some good news on the proposal I worked on last month, we were selected for negotiations, and I am the designated PM for the 18 month initiative.
Also working on my long term disability claim package for Northwestern Mutual. They ask for a lot of documentation, and I need to get documents to all of the doctors who I worked with (3) in the past few months. Paul advised that I would be better off filing the paperwork now whether I accept any disability payments any time soon or not since NMFN may pay my future insurance premiums.
Received a package from Gannett Fleming last week offering a one-time lump sum payout on my pension, so we will consolidate and roll that money over to NMFN. Will make it easier to have fewer but larger retirement income accounts for Kim and me and we'll have more control over the funding stream instead of the monthly payment from the pension plan.
Tuesday, August 5, 2014
Acupuncture Day and NeuralStem and CDC ALS Registry Articles
I had a TMJ appointment on Friday to take some molds for a day guard to help with my teeth grinding during the day and a night guard to help keep my lower jaw forward to improve breathing and reduce clenching and grinding. Unfortunately, my gag reflex was so bad that we couldn't take the molds.
Therefore, I had my first acupuncture treatment today to see if they can do anything to help with several issues - chronic sinus allergies, TMJ, and my ALS muscle spasms. Never had acupuncture before, so was interested to see how it would go. Because I've had chronic allergies for more than 20 years living in Central PA and worsening TMJ for several years, the doctor indicated it will take more than one treatment to see a marked improvement. I did think that the ALS-induced muscle spasms were a little better. She wanted me to come back Friday for a second treatment, but we'll be on our way to NC to see the Knudson clan. Hopefully we can reduce the muscle spasms and get longer life out of the motor neurons in my limbs.
I have noticed more difficulty speaking clearly. Kim has been having a harder time understanding me the past 2 weeks, so my speech must be getting worse quickly. I really need to start investigating the Text to Speech apps for my iPad/iPhone.
Last night I made chicken parm, tonight I am making salsa. Have a little more shopping to do before we leave Friday and pack Thursday night.
Hilary sent me the following press release on the Neuralstem ALS research project and the ALS Association released the results of the CDC's national ALS registry in the following article.
Final Patient Treated In Neuralstem Phase II ALS Stem Cell Trial
GERMANTOWN, Md., Aug. 4, 2014 /PRNewswire/ -- Neuralstem, Inc. (NYSE MKT: CUR) announced that the final patient was treated in its Phase II trial using NSI-566 spinal cord-derived neural stem cells in the treatment of amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The multicenter Phase II trial treated 15 ambulatory patients in five different dosing cohorts. The first 12 patients received injections in the cervical region of the spinal cord only, where the stem cells could help preserve breathing function, in escalating doses ranging from five injections of 200,000 cells per injection, to 20 injections of 400,000 cells each. The final three patients in the trial received both cervical and lumbar injections, for a total of 40 injections of 400,000 cells each, or a total of 16 million cells transplanted. In contrast, the final three patients in the Phase I trial received the maximum 15 injections of 100,000 cells each, for a total of 1.5 million cells. The trial will continue until six months past the final surgery, at which point the data will be evaluated.
"We are all extremely pleased to have completed the transplantations in this historic Phase II trial," said principal investigator, Dr. Eva Feldman, MD, PhD, Director of the A. Alfred Taubman Medical Research Institute and Director of Research of the ALS Clinic at the University of Michigan Health System. "By early next year, we will have six-month follow up data on the last patients who received what we believe will be the maximum safe tolerated-dose for this therapy. We look forward to seeing what the data tell us about safety and efficacy of this approach. It is also worth noting that we will have completed this Phase II trial within a year, roughly. I would like to thank Dr. Parag Patil, and my collaborators at Emory, Drs. John Glass and Nick Boulis, and at Mass General, Drs. Merit Cudkowicz and Larry Borges, for helping us reach this goal." Dr. Feldman is an unpaid consultant to Neuralstem.
"The completion of Phase II of this important clinical research program is a major milestone, demonstrating that patients can tolerate the transplantation of high doses of cells and multiple spinal cord injections," said site principal investigator, Jonathan D. Glass, MD, Director of the Emory ALS Center. "From both a clinical and scientific perspective, I think we are now ready to move forward toward a true therapeutic trial to test the efficacy of this surgical approach for slowing the course of ALS."
"We would like to express our thanks to all of the doctors and medical staff who made this possible, as well as the patients and their families. Without their bravery, none of this would have happened," said Karl Johe, PhD, Neuralstem's Chairman of the Board and Chief Scientific Officer. "With this landmark trial, the first to transplant stem cells in this volume and through so many injections along the length of the human spinal cord, we hope to establish the dose that is both safe and which may be optimal for treatment. We are excited about the collection and analysis of the final data and look forward to advancing to our next trial."
About Neuralstem
Neuralstem's patented technology enables the production of neural stem cells of the brain and spinal cord in commercial quantities, and the ability to control the differentiation of these cells constitutively into mature, physiologically relevant human neurons and glial cells. Neuralstem's NSI-566 spinal cord-derived stem cell therapy Phase II clinical trials for amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's disease, concluded final surgeries in July 2014. Neuralstem has been awarded orphan status designation by the FDA for its ALS cell therapy.
In addition to ALS, the company is also targeting major central nervous system conditions with its NSI-566 cell therapy platform, including spinal cord injury and ischemic stroke. The company has received approvals from the FDA and the Institutional Review Board of University of California, San Diego, to commence a Phase I safety trial in chronic spinal cord injury.
Neuralstem also maintains the ability to generate stable human neural stem cell lines suitable for systematic screening of large chemical libraries. Through this proprietary screening technology, Neuralstem has discovered and patented compounds that may stimulate the brain's capacity to generate neurons, possibly reversing pathologies associated with certain central nervous system conditions. The company has completed Phase Ia and Ib trials evaluating NSI-189, its first neurogenic small molecule product candidate, for the treatment of major depressive disorder (MDD), and is expecting to launch a Phase II NSI-189/MDD study in 2015. Additional indications might include traumatic brain injury (TBI), Alzheimer's disease, and post-traumatic stress disorder (PTSD).
For more information, please visit www.neuralstem.com or connect with us on Twitter, Facebook and LinkedIn
Cautionary Statement Regarding Forward Looking Information:
This news release may contain forward-looking statements made pursuant to the "safe harbor" provisions of the Private Securities Litigation Reform Act of 1995. Investors are cautioned that such forward-looking statements in this press release regarding potential applications of Neuralstem's technologies constitute forward-looking statements that involve risks and uncertainties, including, without limitation, risks inherent in the development and commercialization of potential products, uncertainty of clinical trial results or regulatory approvals or clearances, need for future capital, dependence upon collaborators and maintenance of our intellectual property rights. Actual results may differ materially from the results anticipated in these forward-looking statements. Additional information on potential factors that could affect our results and other risks and uncertainties are detailed from time to time in Neuralstem's periodic reports, including the annual report on Form 10-K for the year ended December 31, 2013 and Form 10Q, for the period ended March 31, 2014.
Logo - http://photos.prnewswire.com/prnh/20061221/DCTH007LOGO
SOURCE Neuralstem, Inc.
Therefore, I had my first acupuncture treatment today to see if they can do anything to help with several issues - chronic sinus allergies, TMJ, and my ALS muscle spasms. Never had acupuncture before, so was interested to see how it would go. Because I've had chronic allergies for more than 20 years living in Central PA and worsening TMJ for several years, the doctor indicated it will take more than one treatment to see a marked improvement. I did think that the ALS-induced muscle spasms were a little better. She wanted me to come back Friday for a second treatment, but we'll be on our way to NC to see the Knudson clan. Hopefully we can reduce the muscle spasms and get longer life out of the motor neurons in my limbs.
I have noticed more difficulty speaking clearly. Kim has been having a harder time understanding me the past 2 weeks, so my speech must be getting worse quickly. I really need to start investigating the Text to Speech apps for my iPad/iPhone.
Last night I made chicken parm, tonight I am making salsa. Have a little more shopping to do before we leave Friday and pack Thursday night.
Hilary sent me the following press release on the Neuralstem ALS research project and the ALS Association released the results of the CDC's national ALS registry in the following article.
Final Patient Treated In Neuralstem Phase II ALS Stem Cell Trial
GERMANTOWN, Md., Aug. 4, 2014 /PRNewswire/ -- Neuralstem, Inc. (NYSE MKT: CUR) announced that the final patient was treated in its Phase II trial using NSI-566 spinal cord-derived neural stem cells in the treatment of amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). The multicenter Phase II trial treated 15 ambulatory patients in five different dosing cohorts. The first 12 patients received injections in the cervical region of the spinal cord only, where the stem cells could help preserve breathing function, in escalating doses ranging from five injections of 200,000 cells per injection, to 20 injections of 400,000 cells each. The final three patients in the trial received both cervical and lumbar injections, for a total of 40 injections of 400,000 cells each, or a total of 16 million cells transplanted. In contrast, the final three patients in the Phase I trial received the maximum 15 injections of 100,000 cells each, for a total of 1.5 million cells. The trial will continue until six months past the final surgery, at which point the data will be evaluated.
"We are all extremely pleased to have completed the transplantations in this historic Phase II trial," said principal investigator, Dr. Eva Feldman, MD, PhD, Director of the A. Alfred Taubman Medical Research Institute and Director of Research of the ALS Clinic at the University of Michigan Health System. "By early next year, we will have six-month follow up data on the last patients who received what we believe will be the maximum safe tolerated-dose for this therapy. We look forward to seeing what the data tell us about safety and efficacy of this approach. It is also worth noting that we will have completed this Phase II trial within a year, roughly. I would like to thank Dr. Parag Patil, and my collaborators at Emory, Drs. John Glass and Nick Boulis, and at Mass General, Drs. Merit Cudkowicz and Larry Borges, for helping us reach this goal." Dr. Feldman is an unpaid consultant to Neuralstem.
"The completion of Phase II of this important clinical research program is a major milestone, demonstrating that patients can tolerate the transplantation of high doses of cells and multiple spinal cord injections," said site principal investigator, Jonathan D. Glass, MD, Director of the Emory ALS Center. "From both a clinical and scientific perspective, I think we are now ready to move forward toward a true therapeutic trial to test the efficacy of this surgical approach for slowing the course of ALS."
"We would like to express our thanks to all of the doctors and medical staff who made this possible, as well as the patients and their families. Without their bravery, none of this would have happened," said Karl Johe, PhD, Neuralstem's Chairman of the Board and Chief Scientific Officer. "With this landmark trial, the first to transplant stem cells in this volume and through so many injections along the length of the human spinal cord, we hope to establish the dose that is both safe and which may be optimal for treatment. We are excited about the collection and analysis of the final data and look forward to advancing to our next trial."
About Neuralstem
Neuralstem's patented technology enables the production of neural stem cells of the brain and spinal cord in commercial quantities, and the ability to control the differentiation of these cells constitutively into mature, physiologically relevant human neurons and glial cells. Neuralstem's NSI-566 spinal cord-derived stem cell therapy Phase II clinical trials for amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig's disease, concluded final surgeries in July 2014. Neuralstem has been awarded orphan status designation by the FDA for its ALS cell therapy.
In addition to ALS, the company is also targeting major central nervous system conditions with its NSI-566 cell therapy platform, including spinal cord injury and ischemic stroke. The company has received approvals from the FDA and the Institutional Review Board of University of California, San Diego, to commence a Phase I safety trial in chronic spinal cord injury.
Neuralstem also maintains the ability to generate stable human neural stem cell lines suitable for systematic screening of large chemical libraries. Through this proprietary screening technology, Neuralstem has discovered and patented compounds that may stimulate the brain's capacity to generate neurons, possibly reversing pathologies associated with certain central nervous system conditions. The company has completed Phase Ia and Ib trials evaluating NSI-189, its first neurogenic small molecule product candidate, for the treatment of major depressive disorder (MDD), and is expecting to launch a Phase II NSI-189/MDD study in 2015. Additional indications might include traumatic brain injury (TBI), Alzheimer's disease, and post-traumatic stress disorder (PTSD).
For more information, please visit www.neuralstem.com or connect with us on Twitter, Facebook and LinkedIn
Cautionary Statement Regarding Forward Looking Information:
This news release may contain forward-looking statements made pursuant to the "safe harbor" provisions of the Private Securities Litigation Reform Act of 1995. Investors are cautioned that such forward-looking statements in this press release regarding potential applications of Neuralstem's technologies constitute forward-looking statements that involve risks and uncertainties, including, without limitation, risks inherent in the development and commercialization of potential products, uncertainty of clinical trial results or regulatory approvals or clearances, need for future capital, dependence upon collaborators and maintenance of our intellectual property rights. Actual results may differ materially from the results anticipated in these forward-looking statements. Additional information on potential factors that could affect our results and other risks and uncertainties are detailed from time to time in Neuralstem's periodic reports, including the annual report on Form 10-K for the year ended December 31, 2013 and Form 10Q, for the period ended March 31, 2014.
SOURCE Neuralstem, Inc.
For further information: Planet Communications - Media Relations: Deanne Eagle, 917.837.5866; MDC Group - Investor Relations: Susan Roush, 747.222.7012; David Castaneda, 414.351.9758
Also, from the ALS Association...
ATSDR Reports First Data Set from the National ALS Registry
Washington, D.C. (July 24, 2014) — Today, the Agency for Toxic Substances and Disease Registry (ATSDR), a sister agency to the U.S. Centers for Disease Control and Prevention (CDC), reported the first data set from the National ALS Registry, a nationwide research project established by Congress to identify cases of amyotrophic lateral sclerosis (ALS) from throughout the United States and collect vital information leading to the cause, treatment and cure of this fatal neurodegenerative disease.
The report was published in the CDC’s Morbidity and Mortality Weekly Report and includes information collected through national administrative databases (Medicare, Medicaid, Veterans Administration) and from self-reporting by people with ALS. Among the report’s findings:
- Between October 19, 2010 and December 31, 2011, the ALS Registry identified 12,187 people living with ALS in the United States, which means about 4 people out of every 100,000 live with ALS;
- The disease was more common among males, whites, non-Hispanics, and people aged 60 - 69;
- White men and women are about twice as likely to develop the disease as black men and women; and
- The disease is more common in men than women, with a ratio of men to women of 1.56.
- The report represents the first ever population based estimate of the number of people living with ALS in the United States and included information collected during the ALS Registry’s first year of operation, from 2010 - 2011.
“This initial report is an important milestone for the National ALS Registry and adds to our knowledge of the disease,” said Barbara Newhouse, President and CEO of The ALS Association. “But this is just the beginning; the first step in what is a long-term research project that not only can tell us how many people have ALS, but more importantly, why they have it. Further enrollment of people living with ALS is critical.”
In addition to identifying the number of cases of ALS throughout the United States, today’s report included preliminary information about risk factor data collected by the registry, including military service, the occupations of those living with ALS as well as smoking and alcohol consumption. The ATSDR is expected to report their findings once analysis is complete, and this information may help the scientific community learn more about what causes ALS.
The report also noted enhancements that have been made to the ALS Registry, including the creation of a research notification tool to inform people with ALS about research studies in which they may be eligible to participate as well as a feasibility study investigating the creation of a national ALS biorepository.
“A national biorepository that collects tissue samples from registry participants and links those samples to data already collected by the registry would provide the scientific community a powerful new resource to advance research,” said Lucie Bruijn, Ph.D., MBA, Chief Scientist for The ALS Association. “Whether it’s the biorepository, the risk factor surveys, or the research notification tool, the registry holds great promise, and we can realize that promise if people with ALS continue to enroll.”
The ALS Association is working closely with ATSDR and other ALS organizations to raise awareness of the National ALS Registry in communities across the U.S. and to help people with ALS enroll in the registry. To learn more about the National ALS Registry, including how to enroll, please visit the registry page of The ALS Association’s website, http://registry.alsa.org/ or the ATSDR’s ALS Registry website at www.cdc.gov/als.
ATSDR’s full report is available here: http://www.cdc.gov/mmwr/pdf/ss/ss6307.pdf
About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure. For more information about The ALS Association, visit our website at www.alsa.org.
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