What I Have Learned

What I have learned….

Don’t believe the hype. The media frenzy about the success of the Nurown/Brainstorm  phase 2 trial is bull. The only patients who saw positive outcomes were patients with fast moving ALS. The patients with slow moving ALS didn’t have positive results at all. Matter of fact some patients had adverse issues just like the patients in the Neuralstem trial I participated in. Seeking Alpha has a great article on the trial https://seekingalpha.com/article/4060673-brainstorm-cell-therapeutics-als-data-promising-press-releases-indicate . If you are considering getting a stem cell transplant you need to read this article.

There is some positive news on the treatment front. I am hearing great news about Edaravone. Apparently it has been found to slow the progression of ALS by up to 30% in some patients. Here is a good article on it http://www.mdedge.com/clinicalneurologynews/article/109647/neuromuscular-disorders/edaravone-slows-progression-als-when/page/0/1 . It might be available to patients in the US as early as this year (2017). Forget the stem cell transplant, try and get on the Edaravone bandwagon!

When I first received my diagnosis and to this day, I am constantly being bombarded by well-intentioned people on suggestions for curing, treating and/or healing my condition. Weather it is magic mushrooms, fecal transplants, Lyme disease clinics, quaky doctors in Mexico, etc.. It can be dizzying trying to sift through all the suggestions of alternative healing. Well thank God for Dr. Richard Bedlack and his website ALSUntangled.com. He explores all kinds of off-label treatment options from legit treatments to snake oil salesmen. It is a very useful tool for ALS patients. I highly recommend it.

If you are a music lover like I am, enjoy high quality sound and have some spare cash lying around. You should consider the Sonos music system http://www.sonos.com/en-us/home  in your house. It interfaces with the Tobii eye gaze computer system beautifully, allowing you to control the music in every room of your house with your eyes. You can access and listen to limitless music services like iTunes, Pandora, Spotify and any radio station in the world including XM/Sirius. The sound quality is exceptional. I have different speakers scattered about the house and they are all great. From the Play: One speakers to the Playbar (which interfaces with your television to give you a surround sound), I would recommend them all. Whatever suits your budget and house size. Go for it! Rattle your windows and sit back and enjoy the beautiful sound controlled with your eyes.

There has been a lot of chatter lately in the ALS community about  the supplement Lunasin and weather, or not, it has positive effects against ALS and even reversing the progression in some people (https://www.patientslikeme.com/treatments/show/26756-lunasin-side-effects-and-efficacy#overview). Lunasin is a 43-amino acid peptide, originally isolated from soy, also found in rye, barley and wheat. It is claimed to have many positive traits to include anti-inflammatory, anti-hypertension, anti-cancer, antioxidant, anti-obesity and other health benefits. It caught my attention about a year ago, so I went on Amazon and bought a bottle of Luna Smart https://lunasmart.com/. I started taking two pills a day, not expecting to feel anything. Much to my surprise and almost to the day, I noticed an immediate increase in energy and motivation to be more active. I don’t think it has reversed the progression, but the disease is definitely moving at a snail’s pace. The results I have experienced are similar to many others in my situation. Placebo effect? Maybe. I do plan on stopping it for a while and seeing how I feel. I will report back soon with the results.


Neuralstem stem cell transplants will never be used as a common treatment for ALS. The treatment is to invasive, takes too long and its success rate is questionable.

Having to remove spinal cord in order to inject stem cells is too complex to become a standard, or routine treatment. When you have to remove portions of the spine for any kind of treatment, you are in for a major operation. It is not routine in any way, shape, or form.

My surgery lasted almost ten hours. Any time a PALS is on the operating table, under general anesthesia  for that long is not good.

The success rate for this procedure is questionable. It seems like all the stem cell transplant trials on ALS patients have around a 50% respondent rate. Less than 10% see a reversal, or major slowdown of disease progression. This number could be actually in the lower single digits depending on the study. Those who do respond seem to return to normal disease progression within a year, or two.

Despite an initial major setback in my personal experience with Neuralstem, I ended up being a responder. My breathing function has been preserved really well. I am convinced the procedure has extended my life for at least a couple of years. I would certainly do it all over again if I had to, that said, I still don’t think it will ever be a common treatment for ALS.

As eating becomes more and more difficult I find myself too weak to function at times and going to bed hungry.  Boost Pudding has been a life saver for supplementing my meals. It’s easy to eat, tastes great and is filling. I find it gives me a good deal of energy as well. It has a ton of vitamins, minerals, proteins and ingredients in it, which can’t be good, but at this stage, who’s counting….

Unfortunately and unlike most ALS patients, now and then I suffer with a decent amount of pain. Most of it is nerve pain, caused from surgical complications. Some of it is physical pain caused from muscle wasting in my shoulders. So, as you might guess, sleeping is a problem, almost nightly. I’ve tried many medications for both the pain and sleep and honestly, medical marijuana has been the most effective remedy bar none. I was very hesitant and skeptical to go get my card (medical marijuana is legal in Rhode Island). I am not a pot smoker and have little knowledge of the whole topic. When we first walked into the dispensary, I was overwhelmed with the amount of choices in different strands of marijuana and ways to take them. I chose edibles as my ingestion method. After many  nights of experimenting with dosing (can you say “green out” :-)) I have settled with 15mg of candy, or brownie (contact me for the recipe) in the evening. It provides me with much needed pain relief and usually a great night of sleep. On the downside, it tends to wreck my speech and makes me drowsy the next morning. Say what you want about medical marijuana, it’s been a lifesaver for me. Being addicted to opioids was not an option I was interested in and trust me, I tried many of them. Just think how many others could have avoided their addiction problems if this option were available to them.

Taking meds stinks. If you can avoid it, do so. Along with the benefits medications provide, invariably you will suffer a side effect (sleepiness, mood changes, liver problems, etc.). Before I had ALS I wasn’t on any meds, now I am on a bunch, reaping the benefits (and side effects) associated with them.

Gilenya didn’t help my ALS, if anything, it made me feel worse and it really did a number on my liver.

 Rilizole had the same effects on me as Gilenya. It wasn’t worth the extra month, or two, of extra life it claims to provide.

That Mexilitine is heaven sent. It has virtually eliminated all of my cramping (which was debilitating) and I’m only taking 150mg a day. I’ve had  no side effects either! If you can find a doctor to prescribe it, do so (currently it isn’t FDA approved for ALS).

Almost every ALS patient experiences constipation, although you will read nothing about it in the ALS forums, or ALS medical literature. It is a constant battle for me and I have tried every laxative and pill in the book. The best laxative for me (by far) has been lactulose. I take 3-4 tablespoons a couple times a week and “magic” happens gently and non-urgently. Unfortunately, like a lot of pharmaceuticals that work really well, it’s only available by prescription.

Muscle spasms are an ongoing problem for people with ALS and can really ruin a good night’s sleep, or, as a minimum, make it very difficult to fall asleep. Most doctors prescribe Baclofen for this problem. I found Baclofen to be “evil”. It makes me drowsy for much of the next day and keeps me in a permanent bad mood. Just ask my wife. 😉 I found a low dose of Valium (diazepam) works wonders at bedtime when the muscles refuse to relax and doesn’t “foul” my mood like Baclofen. Fortunately, I rarely have this problem anymore due to a slowing down of my physical therapy activity.