Treatments

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Peanut42

New member
Joined
Jan 24, 2016
Messages
9
Reason
CALS
Diagnosis
06/2015
Country
US
State
Nevada
City
Yerington
The treatments I am about to mention you may have heard of, tried,etc. These are all backed up by articles on research at the National Institute of Health. Every time I had a question or doubt I found another article. When I go to the facility that is doing the research and mention my wife has Bulbar Palsy I get one on one with an involved researcher. So here is what we have done. Stem Cell therapy at Dr Malan in Scottsdale Arizona. Mini liposuction, kept 98.6, enzemied, centrifuged, and intravenous. 20 minutes prior mannitol to open blood brain barrier. Hyperbaric oxygen therapy at 1.5 atmospheres with oxygen feed mask. Less stress than old 2.4 atmospheres with minimal difference in outcomes. LLLT at the back of the neck and top of the head. This LED is not a Laser, period. And after study may only have effected the skin and nearby muscle. Also backbone absorption and deflection. What we needed was 5-7 joules, 800 nm, 2-3 minutes, and pulse combined with continuous. Detoxification foot bath. Deep brain excercise.

And finally not probably but the best SLP speech-language patholgist. She is in and out side the box. Constantly searching and working with other SLP to find anyway to get results. Using Z-vibe. Results: My wife has been stable for 8 months. Her taste has comeback in a big way, smell is better than before, feeling has returned in face and lips, and palate is more responsive. She can now taste even grape or butterscotch. Her tongue isn't doing enough to warrant removal of her PEG Tube. She is now drinking with syphon straw tip water. She takes and I was told many ALS already take the following: NT Factor & S-Acetyl Glutathione.
 
Good luck peanut.

I hope you have a neurologist documenting all of this.

Let us know how she is in another 6 months, if she has returned to progression or is continuing to improve.

My husband was bulbar onset and ANY stimulation of his mouth caused clonus and a strong jaw clamp response from very early, even when he was still talking and eating.

I support anyone who uses and outside the box means to give some relief of symptoms for however long they can. I am sure you are not suggesting any of these would be considered a cure, just supportive measures to keep some functionality and quality of life for as long as they work. Well done :)
 
Hi Peanut, I'm new here and I would love to know your wifes story.
 
Yes, we are outside the box as everyone says. I like to think of it as a big box with the medical profession in a small box in the corner. We were lucky on finding our SLP, get a good one willing to learn in & out of the box. She is doing what the Medical School head of their SLP said couldn't be done. Thank god she sends her students to our SLP for some training. If I were to do anything different in my wife's treatment, it would have been stem cell therapy right away. She has been stable and has shown small improvements. Return of taste, smell, saliva, swallowing with straw (small amount finger tip controlled), slight palate movement, and feeling in forehead, cheeks, and lips. Last EMG from toe to neck normal and so is all other functions. Not sure if I can mention manufacture of a viration too for the mouth on this site. On the LLLT working with neurologist, laser engineer, and the heads of European schools. Tell them what my wife's condition and we get right to the big guys. Anybody taking NT Factor or S-Acetyl Glutathione? Got info! Can anyone tell me where I can get $4,950 to buy a class III b laser?

The story of my wife. April 2014 took frequent urination medicine. mouth dry and taste & smell coming and going. Then gone. Infection in back of mouth in june 2014. Medication filled infection. Then in September the symptons of Bulbar Palsy slowly started until 5/31/2015 she got PEG Tube. She has done hyperbaric oxygen therapy 1.5 atmosphers, adiopose stem cell with mannitol, detoxification foot bath, deep brain exercise, laser (now know not right type), TENS, NEMS, and SLP. Worked with special needs kids. Very small baby steps is improvement. Must be aggresive, maintenance fine, but not acceptable. I am my wife's advocate. Every specialist we saw treated her as everything was inevitable. They were surprised what where she is, big box not their small box. I have spent hours researching the net and asking the questions different numerous times to get where we are. That is why we came here! There must have been disappointments with devices before! I understand! The PoNS I mention may not be the right one, but it works and the US Army has been using it for over 2 years! The gentleman who came up with this had a blind man see with his brain! Can this help ALS not sure! I think it can help Bulbar Palsy if that is all there is going on! FDA will approve 2016. Again, I talked on the phone with one of main researchers at the University of Wisconsin-Madison.
 
Peanut, I support your wife in doing whatever gives her hope.

For everyone else, however, I don't see a lick of relevance in anything posted here.

Peanut, perhaps you could put links to these individuals and their research
 
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WOW, so much information I find myself getting overwhelmed, not knowing which way to turn. I am blessed that I am still able to take care of myself. I can walk, and eat and still get out a few sentences. Sometimes I feel as though my dr's just want to manage me rather than proactively help me get better or not get worse. Alot of what you mentioned the abbreviations I have no idea of what you are talking about so bare with me If I ask alot of questions. I'm the researcher in my family, everyone comes to me when they want to know about something so I pray my hands continue to work so I can keep on clicking away on this computer I will be researching the stem cell therapy you mentioned. Thanks for sharing
 
Hi I have Bulbar onset ALS (PBP) and have the PEG feeding tube. I can no longer speak. I was diagnosed in June 2013. I am amazed at all the treatments your wife has tried. I would try anything to stop the progression now. I still have use of my limbs but am experiencing weakness in my left hand which is upsetting me alot!. Thank you for sharing with us. Kind regards Jenny
 
I will give you all that I have. Our online research was asked many different ways until we got an answer. You should alway keep a journal of the google searches and the sites clicked. Most of the information was at the NIH (National Institute of Health) articles site. The one stem cell article was on Parkinson's Disease and I read it twice. The second time I finally read all the way down to the very last paragraph, which gave a suggestion for Bulbar Palsy, neurological diseases. Considering that after the stem cell treatment my wife's condition has stabilized now for 8 months. She got back her smell, taste, and feeling in cheeks, lips, and forehead. We hesitated to perform this procedure due to cost & possible outcome and regret it to this day. Was it this treatment or all the treatments? Can't say! I suggest do all. All my contacts have been directly with the research scientists and engineers. Neurologists are fine but we got a Chiropractic Neurologist who gave the best most complete exam even over UCSF. Plus after the exam he layed out a coarse of treatments. Atsugi you don't see relevance! Please share with us your coarse of treatments and actions. I am open!
 
I think your wife is very lucky to have you being so involved in finding ways to help her. I also have bulbar ALS and feel hopeless sometimes because my neurologist is very unhelpful. I try to research ways of helping myself but it's quite exhausting. I love life and want to stay around for as long as possible. I have lost my ability to speak and eat (I have a PEG feeding tube) and my gas/oxygen levels are 91.6%. If there are any treatments your wife has tried anything which has improved her symptoms - I would love to hear about them. Has your wife tried medical cannabis? I've heard that it can help but it's not available here in France.
 
I emailed you. No response
 
Bookay87. I sent you an email with alot of attachments, but it may have gone to the forum (deleted?) and you probably didn't get. I sent again. So if you got it let me know. Subject: Bulbar Palsy Questions. Hope, this will work. The very best, Gloria and Kris
 
Your email and all of your attachments were sent to me because you emailed your response to the private message instead of actually responding to the link in the email and returning back to the forum to communicate.

Please stop posting your email address on our forum; it's against the terms of this website.
 
Sorry David. Lacking in computer skills. I thought it went To Brookay87. Can't post my email to help others. OK. I am not a solicitor nor salesman etc. but have extensive info they may help someone. Can you tell me how to get the attachments to someone?
 
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