HelenL

Thanks Helen, my mom is going to talk to her doc about the supplements. She wants to be sure they are ok to take with her blood thinners and while she is still coming off her steroids. She seems to be gaining some strength back as she weens off the roids, which I find strange since they should do the opposite, but I'm no doctor and maybe they do funny things to people who have neuro issues/disease. I've also asked her to get tested for Lyme disease since that seems to be cross symptomatic with ALS/MND. I wish you the best with your treatment and feel free to PM me anytime.

Thanks so much for your reply Helen. This is all very new, we've only gotten a 'maybe' diagnosis, but it's scared the crap out of me. The neurologist working with my mom is connected to one of the hospitals who will be recruiting in the future for the Dex trials. I am hoping he will try to push her into those when they begin, but I'm not going to rely on anyone to get things done for me. For now we are concerned with getting a solid diagnosis and exploring options once we know for sure what is wrong. We know that her nerves/muscles are breaking down, so any advice on nutrition and supplements is welcome. I purchased a Kindle book on supplements for ALS, but we haven't picked anything up just yet.

Hi Helen,
I didn't get a PM on my wall just the one at 10:45 on your wall. I'm being screened this month for the Dex trial but I want to go on Rilutek too just in case I get the placebo. I'll go off if it makes me sick. I have blue cross and hopefully it won't be too expensive.
I'm taking Nina to Orlando for a week the end of July for her intensive Scoliosis therapy so I hope the screening is not then.
So few people know about me and the diagnosis. At this point I don't feel like explaining since so much is going on in the family.
Hope you get your car fixed. That stinks when the car is on the fritz.
Thanks Helen!!
Susan

That's wonderful! I hope they live a lot more years, I just love them so much! Heck, I hope I live a lot more years too!! LOL!! I know what you mean when you remember events to tie memories to. I do it all the time. Have a great day Helen!!!
Hugs to ya!

I LOVE the Lumberjack song... I'm a lumberjack, yes I am... and the ministry of silly walks, I forgot about that one. How 'bout "this theory, which is mine, is my theory..."

The creatine is recommended to help maintain muscle mass, and the uiquinol Co-Q-10 is used to help maintain maintain the proper levels in your liver (DON'T take a cholesterol lowering drug, but if you do, take this!). It helps generate good mitocondria in your cells, which is part of what gets damaged with this disease.

You know, the only good thing about this disease is the friendships we make through the club no one wants to be in... Glad to help, and nice to have another friend in the Tampa area! I haven't been down there in over 6 years, and it's been 20+ since I tried moving there (couldn't find a job, so freelanced for a while and returned home).

Thanks! How about get your nice fresh albatross from live at the Hollywood Bowl? I like the lumberjack song, the Larch and ministry of silly walks , that one is a classic.
What does the creatine and ubiquinol do for us? I'm taking them along with B12, E, D3, Amino acids and coconut oil.
Thanks so much Helen, I really appreciate your time.
Susan

My favorite Monty Python? Ones I remember best: There's a Penguin on the telly; spam spam spam, and just a little spam in it; "so, your name's not Bruce then? That's going to cause a bit of confusion"; and "NO Puftahs!" Totally a small world...

As far as the Creatine, I bought it from Vitacost.com... It's called NSI Creatine Powder CreaPure - 5,000 mg - 2.2 lbs. I bought it at least 6 months ago, and still have almost 1/2 container, but I do only take 1 scoop a day. If you're not in a clinical trial, you can take more, but it made my mouth tingle a bit.

I also bought My Super Ubiquinol Co-Q-10 100mg softgels from them, you should look into these as well.

Thanks for the info on the magnets too!
Where do you buy the creopure? online?

Oh my gosh Helen.I LOVE Monty Python. I've been a fan for 30 years. I just bought the Holy Grail last year. I've seen it at least 20 times. Either you get Monty Python or you don't. Bill doesn't! Haha!
I should buy the series. I love the dead parakeet, fish slapping and dirty vicar sketch.
Small world isn't it?

Susan, second message, as there's a size limit!

I take 5g of Creatine daily, there's a clinical trial that is using more daily, so you can go up. I'm fixed to the 5g as I'm in the Dex clinical trial, and that's the max they allow anyway. And I never used more than that, my tongue starts tingling a little when I use it, so didn't want to use more. One thing I learned from someone else on the forum: make sure the creatine is copyrighted with CreaPure (I think), which means you're getting a specific formula. Many of the cheaper versions are from China, and there's no way of knowing what you're actually getting. The CreaPure is from Germany.

Don't worry about the questions, makes me feel useful in what I've learned!

Hi Susan, Nikken is really expensive, but try it anyway. It depends on where your shoulder hurts... if it's the whole joint for instance, you may want to get one of the backpads which is flexible and hold it on the area, but its too big to tape on. If its a smaller area, try one of their "super" magnets, which is small, a little bigger than a Kennedy half dollar(?) or so, and use bandage tape to the specific area that hurts. Or you could get a back roller, and skim it over the area (lightly and fast, it works great) until it basically goes numb. I had sciatica, and couldn't move in the morning until I used that back roller. Oh, don't buy the mattress until you try the magnet seat cushion! It's WAY cheaper, and you'll see if it helps before spending nearly a thousand $$ on the mattress pad! Or bide your time and keep looking on Craigslist or Freecycle.

Hi Helen,
I hope your doing well. I found the magnet bed pad on EBAY. The Nikken site was really expensive. Do I just tape a magnet to my shoulder and leave it there 24/7? Is there a certain one to buy?
One more question, You mentioned Creatin before, I'm taking it 1x a day. Is that right?
Thanks so much ! Too many questions
Susan

Thanks Helen,
I'll check it out this weekend.

Hi Helen,
What's a magnet mattress? I'm having horrible shoulder pain. Maybe that will help.
Thanks and I hope your foot is better.
Susan

Ann, you're so sweet to think of me! I just realized that I haven't been online much this weekend, made a concerted effort to do something else I guess. All is well, house isn't sold, a friend is in town visiting her family from California, so visited with her a bit... Met with my realtor, redesigned her signs, as they just don't stand out enough, so hopefully something will happen this next week at my open house.

Peonies are almost all gone, even the ones I cut to save them from our nasty rain are just about gone. Just waiting to see if any more buds will bloom, but it seems doubtful. I wanted to get out and do a little weeding from my scooter today, but waited too long for the late afternoon cooler time, and then ran out of time.

I hope you are feeling well, and no one is leaving you swinging in the air these days.

Love you too, big sis!

Helen