[bill1949]

I will be interested in the discussion myself as I’m at same place for deciding on bed. Does your husband use a NIV at night? Can he get in and out  himself ?

[bill1949]

The slow and difficult definitive diagnosis of ALS is the reason there are studies always looking for biomarkers of ALS. Especially with slow progression ALS , the early symptoms can be other MNDs.

[bill1949]

Angela,  my ENT recommended same thing with the  sinus rinse. I haven’t tried as I was a bit fearful of that in sinuses. Guess I should try.

[bill1949]

Hi Patricia

I too am plagued with the mucus.I just recently got a feeding tube and now am taking Liquid guaifenesin (Mucinex ingredient) through the tube. Helps me to thin and clear thick stuff. I also take ipratropium bromide through a nasal inhaler which ENT prescribed to slow nasal secretions. Very important not to get dehydrated as that thickens it all up. I sip water still plus add extra water through tube, I know I still don’t get nearly enough. Good luck.

[bill1949]

Hi Doug,  your progression so similar to mine. I lost my left arm first. I was diagnosed 4.5 years ago and likely 7 plus years with ALS. My eating become just like yours starting 6 plus months ago. I have tongue atrophy. I really fought it and lost too much weight as I just couldn’t eat enough. A month ago I got a feeding tube and now get enough nutrition. I lost a lot of strength getting there. I wonder if my strength loss would have been slower if I got tube earlier.
I don’t know the answer for you for visitors. You’ve  got to protect yourself so as not to overtax yourself. I have no problems with guests eating regularly while I can’t. My guests are family and all are protective of my welfare.
Good luck to you!

[bill1949]

Lots of people did the two drugs to make their own. I don’t remember hearing major improvements.  Very expensive, can’t imagine real thing will be cheaper.

[bill1949]

I’m with Ginger. The hardest for me daily so far is eating. I’m scheduled for feed tube in about a week. I went from loving to cook and eat to dreading it. I’m hoping eliminating the stress with enable me to enjoy eating a small amount at meals with family.

[bill1949]

It is virtually impossible that I do not have a mutation as my father and brother died from MNDs  both different from my ALS. A sister has a different non fatal neurological disease.  Genetic testing failed to find a mutation. Hasn’t changed my life of course but has caused fear in our surviving younger siblings. They are aware of potential risk. With my kids, they don’t let it worry them excessively as all our disease late onset and hopefully 20 years in future things will be better.

[bill1949]

Does anyone know yet of medicare position on Oral Radicava? I’ve never done the infusion so don’t even know what that would cost me with my Medicare advantage drug plan.

[bill1949]

I think you just have to believe the study results forAMX 0035. The improvement is small enough you need the study., I don’t believe it to be enough that people could tell the slow progression change. I would not trust opinions positive or negative. Hopefully phase 3 willl bring stronger results. I’ve read so many reviews of Radicava and Riluzole where people said that couldn’t tell if they helped but studies report they do.

[bill1949]

As far as cure, not one yet. Many people use Riluzole and Radicava the only two released treatments. At best they slow progression. There are  some other drugs in development which also may slow.  I use atropine drops myself for saliva and find they do work but short duration.
You need to get to ALS clinic for ongoing advice as well as get active online to ask other pALS questions. The supplements people take are all over the map. You will also find that the disease progression is highly variable among different people.  Good luck.

[bill1949]

Seems the things that get researched are strictly things that can be monetized. I’m with Dagmar on research of exercise and it’s affect on disease progression. Another is nutrition and type of diet. In clinic , I hear physical therapists give vague guidance. I’ve been for a couple sessions and soon realize many of them don’t understand. ALS. I’ve talked to the nutritional therapists and they are helpful on coping with dietary challenges but have no information as to whether any specific dietary changes affect progression.
To me it’s frustrating that thousands of us go to clinic or neurologists and have data measured on our progression but it is not used to understand whether anything we do changes our progression. It would take money to develop protocol to gather data about us and to evaluate whether exercise level  and types of diets make a difference. Again, things drug companies can sell get the money.

[bill1949]

I pretty much match the majority results. Would I like to find a treatment.? Of course, but also realize they aren’t there yet.  So far Medicare has been fine for me but time will tell. Trials are hard to get in if you aren’t newly diagnosed and frankly are not testing life changing stuff. For the newly diagnosed I think they look on them with more hope.

[bill1949]

I am limb onset slow progression and have started bulbar affects in last 18 months or so. My biggest bulbar issue is atrophy in tongue which causes me to have to concentrate eating to avoid biting cheeks and tongue. Eating is a pain. Can drink ok just can’t use straw anymore. Get flooded with saliva and sinuses. Take ipratropium for sinus and as needed atropine for saliva.

[bill1949]

My dad’s birthday is this week. He died from FTD with MND 20 years ago. My brother Kevin died 3 years ago from MSA another MND. They are long past the suffering of our family of MND’s. Their memories remain.

[bill1949]

With me a problem with my thumb was what started me at an orthopedist. Besides arthritis he suspected nerve problem. He referred me to neurosurgeon. They performed nerve studies but could cone up with no diagnosis. I then went to local neurologist whose method was to just wait and see. No diagnosis. I insisted on referral to a university MND specialist. I was diagnosed with ALS.

[bill1949]

Here is paragraph from ALS worldwide from Feb 2015.

“The branded Rilutek is expensive. However, the generic, riluzole, has a retail price per capsule without insurance of $3/pill. Insurance can bring this cost down significantly. Medicare and the VA cover riluzole, and the National Organization for Rare Diseases can help support the cost if needed”

I think it disgusting that drugs apparently are priced on what people are willing to pay. I don’t take as both my clinic DR and university research Dr did not think would help me. I think cost for me with Medicare supplement plan would be about $600 a year after copays and deductible.

[bill1949]

I too am really interested about future of Clenbuterol use although huge drop out rate due to side effects was concerning. I read comments in so many forums of people looking to copy others supplements. I’m with Dagmar in using very few basic “supplements”. My blood tests revealed borderline on a B12 and D so I supplement. I take Theracurmin because of Dr Bedlack comments but kept on as it helps my arthritis pain ( or so I think).
People look to copy not knowing anything about nature of others ALS, UMN vs LMN dominant, initial presentation, progression and symptoms. I advise anyone to research before just ordering something someone takes. I think Dr Bedlack site is a good resource. I’m 4 years past diagnosis and likely 7 or 8 years with disease.

[bill1949]

Thanks Dagmar,

I’ve had two visits with speech therapy plus lots of clinic visits. I received no advice on improving speech. Mostly telling about technology. My problem is tongue atrophy plus heavy mucus at times. Tongue much worse when tired.I had recently added a good iPad text to speech app to learn.

[bill1949]

Carol, yes I’ve been diagnosed with ALS for 4 years now. My brother was diagnosed with MSA (multiple systems atrophy) and died from it about 2 years ago. He went quick unfortunately.

[bill1949]

My wife and I have had  vaccine and boosters. We really don’t restrict where we go out. If going somewhere around  lots of people we have brought back our masks.  We don’t closely socialize with those unvaccinated.

[bill1949]

Doug,  I usually sit and not eat or pick at something soft. They understand. My speech  is tough so spontaneous back and forth with group is frustrating. My weight loss was slow as chewing issues developed slowly over a year. Snuck up on me   . Finally got too much so I went for tube. I went from 181 to 169 getting tube and slowly ramping up amount. Up to 172 now. One of my problems is I went into hyper metabolic stage needing more calories asi consimed less. I probably needed tube a month or three before I got it.

[bill1949]

Duane,

search Dr Bedlack and Clenbuterol. He does a YouTube slide show and talks of this. not sure if this  link will take you there.
https://youtu.be/1byZl9vldEo

[bill1949]

Lisa  one place I read about supplements is Alsuntangled.  It’s a site from Dr Bedlack at Duke.