PLS treatments

[Guest guest]

,

Since this is a reply to a reply, I'll keep it short. I have also found

water walking and a four wheeled walker to be extremely helpful.

Unfortunately, I use the pool infrequently because of lack of one. The

walker was 1st a loaner for 14 weeks, then I purchased my own. I have to

use 8 inch balloon type wheels to get around the grass and gravel

surrounding soccer fields and have found it easier to control The price

is just $11 more than one with 5 inch wheels. I am pleased to hear from

you and glad that you are going to keep up with your daughters. As you

probably know, a positive attitude is very important in keeping the

disease from owning you. I guess we have to confront this wacky disease

instead of letting it confront and control us. I'm 54, have had PLS

symptoms since 1994, possibly earlier. Got diagnosed in 1996 and

returned to work as a therapist at a large State Mental Hospital. I'm

lucky to be able to continue working, as so many others, like yourself,

have had to " retire. " Ms. Neff convinced me to try NADH, also, but it

didn't work after 3 months of trial. I'm now on CoQ10 and have noticed a

difference. I have also heard somewhere that a combination of the two is

tremendous. Wish I could afford to try.

Keep going and keep talking. And try not to have any more spinal taps.

Those headaches are nothing to sneeze with. It hurts!

Mike Gray

wrote:

> Greetings to all of the newly diagnosed folks! Seems like there's

> been quite a few over the past several months. I've been kinda quiet

> lately, but still reading everyday, twice a day. New arrivals have

> probably sensed by now that this is the place to be for PLS

> information, symptoms, cajoling, crying, support, etc. There's a

> lotta love here and it does help as we trudge along this path with so

> many working towards, hoping for and praying for a breakthrough and a

> cure. It will happen, hang in there.

> Just a few comments so the newest arrivals won't feel as though their

> m symptoms or attempts at relief from the various symptoms are unusual.

> I'm a 48 y/o, who diagnosed in January 1998, but had noticeable

> symptoms since approx 1994. I went through the myriad of tests to

> eliminate all other possibilities; had the dreaded spinal headache due

> to the lumbar puncture. What a memory!! Had the EMGs. As you can

> see, most of us have traveled this route at one time or the other.

> It's no fun, i.e., trying to find answers, but keep searching and

> visiting this site. You won't feel so alone.

> I medically retired in March 2001 after fighting the symptoms of lost

> of balance; loss of volume in my speech; running out of air in the

> middle of words; uncontrollable laughter; crying at the music of a

> Ford commercial; hyper reflex issues; problems with swallowing,

> choking on my own saliva, etc. I tried acupuncture with no results.

> Originally tried baclofen; it made me feel " stupid " and I couldn't add

> simple numbers. Went to Zanaflex and it put me to sleep within

> minutes. Both were probably at too high of a dosage. My neuro then

> prescribed Neurontin and I took it for about a year. It was very

> tolerable, but other than keeping the fasiculations minimized, I

> didn't feel it was helping my spasticity. We returned to baclofen at

> 10 mg, 3 times a day (much lower than original dosage) and I " believe "

> it's helpful. This lower dosage doesn't make my legs feel like

> " jello " which the neuro said was due to an " exaggerated " decrease in

> the spasticity, nor do I have that foggy-headed feeling.

> Now, almost 5 years after my " official " diagnosis, I find that my

> balance has worsened. I started out refusing to use a cane due to

> vanity and that " male ego " thing; started using one in Oct 200 after

> a bad fall. I progressed to a four wheeled walker in May 2001 (best

> thing I ever did so far re: PLS) and have remained " independent "

> because of it. I still drive and travel distances alone due to the

> use of the walker. To those newly diagnosed..........PLEASE use the

> cane or walker at the first sign of problems with balance. Put aside

> any vanity and do it. People will ask fewer annoying questions, e.g.,

> have you been drinking and you will be safer.

> PLS is an insidious and progressive condition, no one will dispute

> that. On Oct 2 I will be " fitted " for a powered wheelchair because it

> has become virtually impossible to walk around the mall or walk the

> campuses with my daughters at their universities. I refuse to stop

> living and as much as I hate the idea of having to use a wheelchair,

> if it's the means to keep me " active " and able to travel locally or

> otherwise, I'll put my rear end in the chair and GO!! Like many of

> us here, I also get fatigued easily and find myself " fighting' through

> it. Thanks to Mrs. Neff, I use NADH daily and it's been helpful to

> combat the fatigue. I also overdo it some days and have to " recover "

> the following day by doing much less. I also attend aquatherapy in a

> heated pool twice a week and this, I do believe, has been my " saving

> grace " . It's very helpful and is an excellent source of

> cardiovascular exercise; strengthening and an unbelievable assistance

> for the balance issue we all face with PLS.

> I apologize for being so lengthy. I just feel the need to share with

> the newest arrivals, because I, too once felt very alone with this

> condition until I found TR.'s website and subsequently,Mark

> Weber's PLS Friends listserver. As we're now seeing as a result of

> the so many efforts over the last year, there is strength in numbers.

> I must say the one thing I dread the most about PLS is the fact that I

> have progressively lost my ability to communicate as well as I once

> did. Because my tongue and soft palate are both affected, I do slur

> words and people who I meet have a difficult time hearing and/or

> understanding me. So, I speak more slowly and try to overcome. Hey, I

> don't give up! I have a follow up

> appointment with my speech pathologist tomorrow to " test " an assistive

> device that'll amplify my voice. I know it won't help with the

> clarity of my speech, but at least I can speak slowly and loud enough

> for folks to hear me. You should see me when I pull up to a Burger

> King drive thru window. I actually carry a small megaphone in my car,

> so the person at the drive thru can hear me when I order that

> chocolate shake!! LOL

> Sorry for the length. Just needed to share my experiences and hope

> that some of the information helps at least one person. It makes it

> all worthwhile.

> Regards,

> (DE)

> P.S. If you ever have the opportunity to attend a gathering of PLS

> folks and their caregivers, spouses, etc....GO!!! You will meet some

> wonderful people, learn so much and come away renewed and refreshed

> despite your own personal symptoms.

>

> Original Message -----

> From: frazerlindsay

> To: PLS-FRIENDS

> Sent: Sunday, September 22, 2002 3:26 PM

> Subject: PLS treatments

>

>

> A new member with a lot to do to catch up - which I hope to do soon.

> Only just diagnosed after three/four years of tests. Am trying

> massage, muscle toning in the gym and aquaaerobics, the latter seems

> so far to be most helpful.

>

> A question - has anyone tried, and found beneficial, treatment by

> acupuncture?

>

>

>