Taking A Supplement Will Keep All Posted

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Remedy for the swallowing of big pills . Not Gel Caps . I have a coffee grinder i bought at Walmart i put some pills in Like Calcium which is like swallowing chalk . grind em up put em in what ever food you like .
now you have a powder . Geo
 
By the way Beth, sorry to hear about the progression. What do you mean by funky hands?

It's hard to explain, but in addition to weakness and some visible atrophy in my left hand, my fingers don't line up any more. I can curl them all together into the palm, but can't bring them together when the fingers are straight. My middle finger (which is critical to driving in L.A.:)) is bending off to the left, my index finger is stiff and straight, and I cannot bring them together. It's like I'm making a perpetual V for Victory sign! I assume the little muscles in the fingers are atrophying. Also, am getting occasional aches and numbness and shakiness in that hand.

Once, I had a full contracture (I guess that's what it is), where my whole hand spontaneously went into a fist and clenched down under like it was trying to go flat against my arm. I straightened it out with my other hand and it was OK, but clearly the poor muscles of that hand (and arm) are having a heck of a time doing business as usual!

Individually, all these seem very minor, but they add up to "funky hand."
Hope your mom's doing OK, Sral.
BethU
P.S. Thanks for all the tips on pills! I can pour oils and ground-up pills into my fruit smoothies, where I dump all my protein powders, liquid vitamins, fruit, Ensure, etc.
 
Beth

That's exactly the way my right hand is working now. I can't touch my middle and index fingers together when my hand is open. Also, I can't use my right hand to eat with, because it shakes so much.

At least now I know the technical term for this. Funky Hand. I guess it's better than Funky Butt!

John
 
HAH! Love it. :)

BethU
 
One has to wander how much of the Supplements that you take, gets to the point where it can work .
Getting through the digestive tract and still being in tact to get to where it has to work . By the time something gets out of the digestive system and to the Brain in tact has to be a minor miracle because the digestive acids are made to break down everything to a liquid then the small intestines is broke down again into its chemical components then to the Liver ,then to the Pancreous etc etc . Geo
 
hello geo

sorry for my late response to your thread.
what is choline?
i do hope it helps you,but i suspect its too early to tell after only a few days.
natural suppliments just like other meds can take upto 12wks to build up in your system to notice an effect.
hang in there and give it a couple of months.
take good care.
caroline:-D
 
Geo,

I agree, it is hard to know how much gets absorbed. I have used in the past sub-lingual (sp) under the tongue. Then I *think* you can be assured that it is going into your blood steam. Maybe they have it in that kind of form? or enteric coated?

april
 
Don't know if this is the right thread for this rant, but it's vaguely on topic, on supplements for ALS.

I have decided to go back on Mestinon, which I was taking when I was diagnosed with MG. I have been so exhausted and foggy recently, I had to try something. So I did a test run Saturday ... just wanted to see if the great effects I got from Mestinon last spring (energy, physical strength, some symptom relief) were real.

So I didn't take my heart med in the morning (it interacts with Mestinon, and I know I shouldn't mess around with the beta blockers, but ... ) and took 60 MG of Mestinon instead. Within 2 hours I could feel the energy kick in ... I actually felt "normal" again, i.e., I had as much energy as I did before ALS! Plus a sense of well-being. I think it improved my physical strength, too ... I was able to carry a big basket of laundry that my husband couldn't lift, and later on when my husband collapsed 4 more times that day, I was able to get him up each time.

The last time, he couldn't stand or help me carry him. His legs were not working at all. I got my computer chair, which has little wheels, and managed to lift him onto it, and was able to push the chair and him to the bedroom (over carpet, which was hard) and get him into bed. I'm not sure I could have done it without the Mestinon.

About noon, when I took my second dose of Mestinon, I realized my speech had improved! Not the enunciation ... that's gone forever, I fear, with the tongue atrophy ... but the speed. I could talk my gibberish much faster than before. Maybe half a normal conversational speed.

On another ALS message list, I heard from two PALS who also got energy and strength from Mestinon, but who did not continue it because of the side effects. In my case, it produces minor twitches all over my body, which are annoying, and stronger twitches than normal in my affected arm and hand. Other people get digestive problems with it. But I really need the strength right now. I just took it that one day (I did a clinical trial of one person!) as I don't want to stop the heart meds without my cardiologist's OK, so am currently back to my exhausted state. I'm going to write my cardiologist and see if there is some heart med I can take WITH mestinon, so I can start taking mestinon regularly again.

I really need some physical strength, as my husband is in a bad state right now. He not only collapses to the floor several times each day, but he is suddenly getting double vision, too, and has started to lose bladder control, with no warning at all. Sitting at dinner, he'll suddenly wet himself. He HATES HATES HATES this, and is really depressed when I have to half-carry him from the table to the couch. He says, "I should be taking care of YOU," but I told him, "That's what you get for robbing the cradle." My speech is so bad, he doesn't get my jokes any more. (Which is obviously no great loss.:)) One of his falls Saturday was out in the yard, and I didn't hear him calling. He couldn't get up or walk, and was crawling toward the house on his hands and knees when I went out looking for him.

His pain symptoms started out 25 years ago with pins & needles, burning sensations and numbness in his feet and legs. Neuros back then were sure it was MS, but couldn't prove it, so they wrote it off as peripheral neuropathy (sp?) and later threw in spinal stenosis, and have done occasional useless surgeries, physical therapies, etc. for the last two decades. After I got him to bed Saturday night, I Googled "double vision inability to walk" and got a gazillion hits on MS. Turns out urinary incontinence is also an MS symptom.

Didn't mean to run on and on, but I'm pretty bummed about his condition and what he's suffering and has been suffering for so long. Our current doctor refused to give him anything for depression ... she said, "All we have to do is get rid of the pain, then he won't be depressed any more!" ... and it's a good thing I can't speak, as I probably would have screamed at her, "What do you mean, 'all you have to do is get rid of the pain!' Nobody's been able to do that for 25 years!"

Anyway, we did get a referral to a pain clinic last week and script for Ativan, which is helping his pain tolerance a little bit, and I just hope we get an appointment at the pain clinic on one of his better days, when he can help walk, and I can half carry him from the car into the clinic. If he's having one of his "can't walk at all" spells, we're up the creek. Thank heavens, he's skinny! This is where my being a lousy cook all these years really pays off! :)

Dropped off an "urgent" letter to the doctor this morning about his new symptoms ... double vision, incontinence, etc. Hope this lights a fire under her to refer him to a neuro. And hope he gets a better neuro than I started out with on the ALS battle!

I tell you, we're a great pair. Between his double vision and mine, the house is getting crowded!

Sorry to unload here on non-ALS topics ...
BethU
 
No problem BethU. We all need to rant or vent once in a while.

AL.
 
Beth,

You are really funny (as sad as all of this is) at least you can laugh and joke. I almost p---ed myself reading it.
Can you send me some of that Mestinon! I don't know why they can't approve that for ALS if it can give you that much strengh and energy. Even if it has side effects every medication has side effects.
I need to talk to my dr about this.......
 
Hey BethU

So with all that double vision, do you see that MORE of the house is clean? hahaha

And you don't have to work as hard!

Bless your heart, I keep you and your husband in my prayers each day, hope all goes well with the pain clinic. I don't understand how the doctor can NOT give an antidepressant- but then again, the doctor doesn't live with your husband now does he? So many things going on, I'm glad you can vent with us!

Keep the faith,
brenda
 
Thanks Al, and Crystal ... I came across a statement on the ALS Ride for Life website recently, where they quoted the guy who diagnosed me at UC Irvine as saying that sometimes Mestinon is prescribed for ALS patients who are constipated. (Digestive "problems" being one of Mestinon's side effects. Fortunately, I get the twitches instead.)

I came across another statement months ago saying that "some" PALS find some symptom relief from Mestinon, but I can't remember where I read it, or if it was a legit website or not. I read 'em all.

Since it doesn't really have bad side effects ... annoying ones, but not serious ... and is a symptom-only relief, which lasts for 1 to 4 or 5 hours (altho I think it lingers longer in me), I don't see why neuros would not offer it to PALS who were interested in trying it. It might take a little creative prescription writing. (Constipation, anyone?) I believe it works on the nerve-muscle junction by slowing down the signals from the brain. I know that this junction is an area of interest to some ALS researchers right now, so there could actually be a good reason it helps.

Good luck!
BethU
 
So with all that double vision, do you see that MORE of the house is clean? hahaha
Keep the faith,
brenda

I get it twice as clean with half the work! Actually, not sure about the twice as clean part, but definitely I'm doing half the work!
:)
BethU
 
Love it!

Keep smiling my dear, and rant and vent on here anytime!

Keep the faith,
brenda
 
Beth ,My attention span is not that long to read all that LOL LOL ,but i'll promise i'll go back and try . LOL Geo
 
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