@bill1949
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Bill replied to the topic EXCESS MUCUS in the forum Living With ALS 1 week, 3 days ago
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…[Read more]
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Bill replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 2 weeks, 3 days ago
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 am…[Read more]
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Bill replied to the topic How to handle visitor requests when daily activities get difficult in the forum Living With ALS 2 weeks, 5 days ago
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 en…[Read more]
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Bill replied to the topic Would you seek out Albrioza treatment? in the forum Research Topics 1 month ago
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.
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Bill replied to the topic What is, or has been the biggest adjustment for you in living with ALS? in the forum Living With ALS 2 months ago
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.
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Bill replied to the topic Genetics, How Does this Knowledge Change Things for You? in the forum Research Topics 2 months ago
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 ris…[Read more]
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Bill replied to the topic What do you think of this new form of Radicava? in the forum Research Topics 2 months, 1 week ago
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.
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Bill replied to the topic What's the latest news on AMX0035? in the forum Research Topics 2 months, 2 weeks ago
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 Ril…[Read more]
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Bill replied to the topic A cure and hope for ALS (also wanting to know about treating excess saliva) in the forum A Forum for ALS Caregivers 2 months, 2 weeks ago
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 a…[Read more] -
Bill replied to the topic What Research Do You Think Should Be Targeted? in the forum Research Topics 2 months, 3 weeks ago
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’…[Read more]
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Bill replied to the topic Do You Think You Match the Results of this ALS Survey? in the forum Living With ALS 2 months, 3 weeks ago
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.
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Susan and
Bill are now friends 3 months ago
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Bill replied to the topic Teeth and Bulbar ALS in the forum Living With ALS 3 months ago
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 n…[Read more]
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Bill replied to the topic I would like to remember those in my family who have lost their battle with ALS in the forum In Loving Memory 3 months, 2 weeks ago
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.
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Bill replied to the topic CLENBUTEROL in the forum Research Topics 4 months, 2 weeks ago
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.
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Bill replied to the topic CLENBUTEROL in the forum Research Topics 4 months, 2 weeks ago
Lisa one place I read about supplements is Alsuntangled. It’s a site from Dr Bedlack at Duke.
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Bill replied to the topic Where do you start? in the forum Diagnosis Information and General Questions 4 months, 2 weeks ago
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…[Read more]
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Bill replied to the topic Drug prices have increased faster than inflation in the forum Diagnosis Information and General Questions 4 months, 3 weeks ago
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 n…[Read more]
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Bill replied to the topic CLENBUTEROL in the forum Research Topics 4 months, 3 weeks ago
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 becau…[Read more]
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Bill replied to the topic How to Keep on Talking: Helpful Tips and Links for ALS-related Dysarthria in the forum Living With ALS 6 months, 2 weeks ago
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.
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