Improvement in eating

[Firefighter58]

Hi folks, just a note to bring you up to date, last night had a full meal for supper, shepherds pie, large bowl of ice cream and a glass of Pepsi. This morning a large bowl of fruit cocktail, not bad for a guy that had a feeding tube put in a year ago because I could not chew or swallow. My wife started feeding me custards and pudding by mouth from there I started other foods.
About six months ago I was eating small meals but had to use my fingers to move the food around as my tongue would not move. Now my tongue works better not perfect but no finger required but still to eat a meal is very slow, maybe an hour may be more.
Still no improvement in speech, can not talk at all. and no improvement in walking, still use a cane sometimes a walker or wheelchair. But very happy that I can enjoy a meal now.

 

[KimT]

That is WONDERFUL! To what do you attribute the improvement?

 

[KateEmerson]

So happy for you Firefighter!

 

[Firefighter58]

I was put on a drug and vitamin program buy my GP and Nerol. but I think it is really determination on my part. Could be wrong I don't know.
Al

 

[KimT]

Al, Whatever it is.....keep it up!!! I'm very excited for you.
Feel free to post your protocol. I'm curious to see if mine is similar.

 

[DaChief]

Outstanding!

 

[notBrad]

Very happy for you.! I would also like to know more about the protocol

 

[Firefighter58]

Good Day all, Kim and Brad asked about my protocol, this is the vitamin program given to me by ALS Canada, ALS Clinic.
Vitamin E ( natural source ) 2000UI per day.
Vitamin C. 1000 mg ( time release ) 500 mg twice a day
American Ginseng approx. 500mg. can not be bought exactly 500 mg. daily dose.
Resveratrol ( red grape seed ) one to three capsules per day
Acetyl -L-Carnitine. start at 500 mg then up to 3 gr. per day
Co-Enzyme. Q10 Approx.100-180mg/day. 60 mg Capsule twice a day
Creatine. 1Tsp. add to apple sauce or yogurt, juice eat.
Vitamin D 2000 iu per day. "". ". ". "
PQQ ( Ptrroloquinoline Quinone ). 10-20 mg
Calm. magnesium

Below is a list of drugs prescribed by the ALS clinic
Rilutek.
Baclofen
Tizanidine 4 mg
Pramipexole Dihydro.

I take all meds and vitamins by feed tube. I eat full meals now by mouth though very slowly, but it works.

Al

 

[KW1234]

Very cool.

My regimen is a bit different.

Vit D.. 8000iu..
Boswellia.. 350mg .. reduces inflammation and mucus in my lungs
Berberine... 500mg.. controls blood sugar and blood pressure.. I have bad apoe genes.. 2,4
Niacin...750mg... increases cholesterol particle size
Red yeast..1800mg.. reduces cholesterol
Coq10...
Adrenal cortex.. counters the effect of prednisone
Methylcobalamin..1mg.. recommended by neuro
Magnesium.. 400mg
Fish oil.. in my veggie smoothie
Tumeric capsule... anti inflamatories
Baby aspirin

I also do a formulated protein shake daily from xymogen labs that has additional vitamins and supplements that my functional medicine doctor recommended. That contains vitamins A,C,E, thiamine, riboflavin, niacin, B6, folate, biotin, pantothenic acid, calcium, iron, phosphorus, iodine, magnesium, zinc, selenium, manganese, chromium, molybdenum, N-acety-L cysteine, glutathione.

I do riluzole once a day. (Can't seem to fit that second one in and eat)

I try to do 4 days a week at the gym or therapy pool for 1 hour sessions to keep limber

All in the quest to be as healthy as possible

 

[Gotty]

Hi Al,
Thanks so much for posting your regimen. I am thrilled to hear of your advancements in hope it continues to improve for you!

I was surprised to see that the ALS clinic had suggested it. Do you attend the Sunnybrook clinic? I do and my neuro is Dr. Petrescu. Who do you see there?

I 'joined the club' in Nov 2015 though had not heard of this type of support. Not sure if you are aware and interested and thought I would mention there is a PALS support group who meet at Sunnybrook on the third Thursday each month, from 11 am to 1 pm. I have recently started attending and you are most welcome to as well if the trip from Oakville is doable for you.

They are always looking for new discussion topics and I suggested (for the March 16th meeting) the topic of alternative therapies, meds and such. I'd love to share your regimen with them though not sure if they might already know of this? I hadn't, and surprised the subject has not come up during my Dr visits. Any thoughts you can lend would be most welcome. And if others on the forum have ideas on alternative meds/vitamins/therapies (i.e. Acupuncture, stem cell implants, others??) they'd like to share, i would be most grateful to hear about them!
All the best Al, on your improvements!
Gotty

 

[Firefighter58]

Hi Gotty good to meet you, sorry but I do not attend Sunnybrook, i attend McMaster Reseach University ALS Clinic in Hamilton under the direction of Dr. Turnbull. I find the whole clinic very knowledgeable and helpful. Dr Turnbull is the head of research there and I find his staff very helpful, anything I may need we just mention it to them and I get it. If I must be a Pals then I what them on my team.
I have regained the ability to eat but nothing more yet, but I will keep trying. I am working on my speech now and although I use a wheelchair and can walk with a cane I will keep working on that. If nothing more improves at least it keeps me busy, better then sitting on my ass all day feeling sorry for myself, something I have never done yet.
Al

 

[Firefighter58]

Hi folks, something i forgot to tell you guys, I was cleaning out a cupboard yesterday day and foung an old prescription bottle. Back when I started this program I had a prescription for excessive siliva, I used to slobber all over myself. I don't have that problem anymore. I had forgotten all about that.
Al

 

[Nikki J]

I am happy for you. If this continues ( meaning you do not regress though I hope you improve) perhaps contact Dr Bedlack who studies reversals ALS Reversals

What does your clinic tell you? Are others experiencing similar benefits?

 

[Firefighter58]

Just finished a bowl of fruit cocktail, very good exercise for the tongue having to move all those small pieces of fruit around. Not only that it is tasty and good for you. It is my rule, no fingers allowed, takes awhile but I am in no hurry. I think this helps improve or at least maintain my ability to now be able to eat regular meals.
Nikki you were asking what my clinc says, I have an appointment next week so after that I may have more info.
Al