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BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,646
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Had my three-month clinic visit at UCLA today. and Dr. Pazos commented at the end of the visit that they are awaiting final approval to begin a stem-cell clinical trial, and she thinks they will get the go-ahead within a couple weeks. Like a dummy, I didn't ask for details, because I got so excited by the news. If anybody knows more, please share.

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My FVC was up from 49% in December to 57% today, but I think the December reading was faulty as they couldn't get a good seal. Anyway, I'll take it whatever the reason.

Had two bad falls in the last week, the first I've had. The second one was today. Fortunately, the DynaVox rep was with me and called for help and got me up. Paul was sleeping and didn't hear me fall. My ribs still hurt like hell from last week. Banged my head good both times. As of today, I am now using my walker ! I remember, Patricia, when you fell and said you were afraid to walk. Same here.

Neuro said I have to get a leg brace ... I am stubbing my left toes a LOT ... and also have to wear crummy velcro tennies or something other than loafers. First my Berkies, now my real shoes. I guess that's the least of my worries. "Geez, I got ALS and now I have to wear tennis shoes."

Life goes on and so do we ... And so, hopefully, so do stem cell clinical trials !:)
 
Beth,


Congrats on the the up'd FVC count! I'm sorry to hear of your falls and hope you are not bruised too badly. (Any bruise is bad enough...)

Here's hoping your ribs, head, feet and other affected areas of the fall recover quickly.
 
Beth,
Hate to hear about your falls, hope you aren't too sore. That sounds cool about the stem-cell info, I don't go back to clinic until 5/12, so I'll keep watching on here to prepare my knowledge!lol hahahahaha

It's funny, my knowledge base seems to be shrinking since I'm not working as much-or maybe it's just focused on all the closets I'm cleaning out and making over!
take good care,
hugs,
brenda
 
Beth...wow what potentially good news about the possibility of stem cell treatment, that is what I am hoping for, stem cell at a trusted place...please keep us informed of any progress on that front. Glad your fvc appeared to go up.
Your fall.....I know what you mean, I have had a few and keep catching my big toe and bending it back..pretty painful, I am sure time it will break, but on a practical note....I am sure something like this should be available in the USA...my OT has ordered me an alarm thing, which if I need help I can press, it has the option to be worn around the neck or as a bracelet, if I press it, it will call my husbands cell phone and he will know I need him, even though I cant talk. It will work inside our house which is large or if he goes outside..anywhere..so he will know to get back to me. Tied in to this, there is also a FALL alert, so if I fall and knock myself out, it will call him as well. They also do some which will alert a call centre who can call anyone including emergency services..but we are not having that. Another thing the OT is looking into, which my husband found somewhere on the internet, but could be made by anyone..is an I AM A CARER card. So if anything happened to my husband whilst he is out, accident, heart attack or some such emergency, then people will find a card on him, saying that he is a carer for me, so send help for me as well.
The things we need to do!
 
Beth,

I was thinking about you yesterday remembering that your clinic appointment is a week ahead of mine. Thanks for the heads up on the clinical trial, when I go to UCLA next Thursday I'll see what I can find out.

I think you'll find the leg braces will make a BIG difference. I was really surprised at how much they help me. I can hardly walk without them, but I'm walking all over now.

PS: I love reading everything you write! Love your blog.

-Tom
 
Beth my leg braces are my best friends! I tried using Uggs the other day thinking it would keep my toes up while in the house but my big curled so much I couldn't get the boot on.

I have decided I like my tennis shoes (Simple brand) and braces. I don't walk anymore but they help with transfers. I can still lock my knees and stand for transfers. Without the braces my toes would catch on the floor.

Sharonca
 
Dang! Having to wear tennis shoes and can't play tennis! That stinks.:-D

Beth, we luv ya - keep hangin' on to hang on! (That might be too Southern for some of YA'LL - sorry).:mrgreen:
 
Stem cell

Beth, I am so sorry to hear about your falls. I have been falling for almost 1 year. I now wear those braces and I LOVE the fact that I get to wear tennis shoes. Now sandles, those were tough to give up. Heels, were easy not to miss. My braces help a lot so hang in there. I have a friend who keeps me posted about clinical trials and she is excited as well. If I hear anything, I will let you know. She keeps saying this summer will be a great time for stem cell. Hang in there! Teresa
 
news on stem cell clinical trials sounds AWESOME. great news, Beth! keep us posted.
 
Beth, sorry to hear about your falls, it must be scary. Guess I have lots of stuff to look forward to....
Very good news about the stem cell update though.
Wendi
 
Just missed you

Hi Beth -sorry to hear about your falls please take care.

I was just at UCLA for my first visit on 2/26 -we just missed meeting each other. I saw Dr. Barros but nothing was mentioned about stem cells - please keep us posted.

Mahea
 
Beth, So sorry to hear about your falls. Hope you recuperate very quickly. Good news about the stem cell study. I want it. I told my Dr. at Mayo, put me on the top of the list, anywhere. I really think it will be very beneficial in treating this disease. Please keep us informed. My best to you.
NancyS
 
STEM CELLS~

I heard on a talk radio show that they have been using adult stem cells and cord blood cells to succesfully treat things like diabetes, ms, and I cant remember the other things. Is this true?
 
Hey Beth,

Sorry to hear about the falls. Go for the brace , its actually liberating once you have it on. I have found that bruises and scrape heal a lot slower these days with ALS, so guarding against falls is worth it. Besides catching a toe , etc , has your balance been affected ?

I have a brace for the left leg and I wear it all day while I am at work.
Once supper time rolls around , I take off the brace and use a walker around the house. I will put the brace back on when I need to leave the house.

Hang tough.
Glen
 
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