Re: new to PLS

[Guest guest]

Steve,rolfing is a massage that is very intense,not recommended for PLS,or

any neuro disease.To relieve stiffness I suggest doing some stretching

exercises.You should start with a physical therapist who is familar with

neuro. diseases,he or she can show you the exercises that would be most

beneficial for you.I have a regimen that I follow on a daily basis,stretching

ex.every morning,10-20mins.I spend 2-3hrs/day@ the gym,(almost

everyday,afternoons)workout on the nautilious,equipt.,do 30mins.on the

treadmill(2.5miles/hr)then swim for about an hr.Your therapist can also give

you aquatic ex. to do.I've been doing this since 95,it has helped me

considerably.

Steve,we are having a PLS'ERS meeting in Connecticut 27th,28th,of Oct if you

are interested let me know,I'll send you the info.Good luck with your final

dx.

Cecere

[Guest guest]

> I have been tentatively diagnosed with PLS with symtoms of which

some

> of you share. I say tentatively because my neurologist said it may

be

> PLS but he will see me again in three months.

> Naturally, as with all of you, the news is disturbing and I find

> myself looking in every direction for some answers as to what I can

> do to make life bearable.

________________________________________

Steve,

I share your feelings regarding being tentatively diagnosed with PLS.

After a visit to the NIH 2 weeks ago (to try to get into a PLS

study), I still do not have a firm PLS diagnosis. Two other

disorders

cannot be ruled out at this time.

As my symptoms progress, 2 of the 3 possible disorders that I could

have will eventually be ruled out. Until then, no real neurologist

can give me a firm diagnosis given my symptoms. (PLS is my neuro's

working diagnosis.)

Although it is frustrating for us, it is probably also frustrating

for

our neurologists. I doubt that they enjoy telling patients that they

cannot make a firm diagnosis--that it may take several years before

all of the clinical symptoms emerge to allow them to make a firm

diagnosis.

______________________________

> My left leg drag is increased substantially in colder

temperatures,is

> this familiar to anyone?

_______________________________

I become substantially more spastic in colder weather. I suspect

everyone else with PLS does also.

Please ask more questions, we'll all try to help. (That's what this

list is here for.)

Take care,

Mark

[Guest guest]

Hi Steve:

Welcome to the group. I am in the over 60 age group, and have had this

PLS (only diagnosed 15 years ago), but have had it longer than that.

Unfortunately there is no cure for PLS, and it seems that each one of us

has different symptoms. We all have different ways of dealing with it.

I am the rebel in the group (as you will learn as you get to know us

better). There are wonderful people in this group, who are dedicated to

help each and everyone as much as possible. My philosophy is listen to

your body, and less is best (for me). I still walk with the aid of a

four wheeled walker, I drive, and have a wonderful support system (my

family), who spoil me to death. I believe in the power of a positive

attitude, and feel that negativity and depression makes matter worse,

and has a direct effect on the body. I will get off my soapbox now,

and say once again welcome. I was not privy to all of this when I was

first told I had PLS, consider yourself so fortunate to have found this

site.

Where are you from???

Best of luck!

Rita (from New Hampshire)

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

[Guest guest]

Welcome Steve,

I know how disturbing and frustrating it is to have a diagnosis like this

made. Hang in there. You know, the best thing we have going for us is

time. With such a slow progression, you learn to adapt your lifestyle, a

little piece at a time. Like you, I went from a very active routine, to

early " retirement " at age 52. I am a Registered Dietitian; I can't get that

out of my blood, so I hand out free advice all the time. I do a lot of

reading and keep exercising my mind as much as possible. I would give a

very strong NIX to rolfing. Gentle strengthening and stretching exercises

are a must to help you maintain function. I do best in a pool because with

the buoyancy of the water, the strain on your body is much less. Each of us

seem to have our own unique set of symptoms. I guess you are one, as my

buddy C. is, adversely affected by cold. I am part of the other

group--I get extremely weak when I get too warm.

I don't want to overwhelm you with too much info, but I'd be glad to answer

any specific questions you may have. I've only had a computer for about a

month, but the support and sharing from our group is wonderful.

Dolores Carron (d.carron@...)

new to PLS

>

> Hi folks; I have been lurking your board for several days trying to

> build up courage to post. I guess I'm somewhat confused:

> Explain;

> I have been tentatively diagnosed with PLS with symtoms of which some

> of you share. I say tentatively because my neurologist said it may be

> PLS but he will see me again in three months. I am a 60 year old male

> without any history of illness until now. For the past 3 years I have

> been feeling slight changes in my ability to function normally which

> I attributed to a change in my everyday activity. About that time I

> gave up my construction business and kind of semi retired.

> Naturally, as with all of you, the news is disturbing and I find

> myself looking in every direction for some answers as to what I can

> do to make life bearable.

> Does anyone know or have heard about Rolfing? It was suggested that

> I look into it as a means to stay limber.

> My left leg drag is increased substantially in colder temperatures,is

> this familiar to anyone?

> I would appreciate any info.

>

> Thanks Steve........now that wasn't so bad

>

>

>

>

>

[Guest guest]

Hi Steve, and welcome to our group. I now how frustrating it is not having a definite dx yet, but I would guess that since your doctor is being open about what the suspected dx is, that makes things a bit easier. Several of us went through years and years of neurologists telling us it was all in our heads. I would have much rather had an honest answer. It took me 4 years and 6 neurologists to find one that knew what he was talking about.

I'm sure your neurologist explained why they can't make a definate dx at this time, but you might want the read Dr. Armon's paper on PLS. Dr. Armon is my neurologist and he made my dx @ approx. 98% certain PLS. The other 2 % uncertainty seems to be because ALS can be slow in developing lower motor neuron signs in some (rarely) cases. So I feel pretty confident that the PLS dx is correct.

There are two websites you might want to check out. Both have links to Dr. Armon's paper. The first one is Reyerse's website. He was our hero in developing the first website for PLSers. His site has been a lifesaver for most of us, offering all kinds of good info. You can go to it at:

http://www.geocities.com/freyerse/index.html

The second website is one I started as a fundraising website. It's link is at the bottom of this message. The direct link to Dr. Armon's site is: http://www.emedicine.com/NEURO/topic324.htm Dr. Armon talks about the time factor in dx'ing PLS. The current thinking is 3-5 years, depending some on where your symptoms first started and how they have progressed. It is a very interesting paper, one I think all PLSers would be wise to print and send or take to their own neurologist for discussion. It is actually a training guide for doctors and was just recently written, so it is up to date on the latest info.

Hope all goes well for you and your dx is PLS! It's is kind of strange that anyone would hope for a dx such as this, but in our cases, it is the lesser of two evils!, Jen, JT, mdmfoo, whatever!

Check out the PLS Awareness website and help raise money for research! http://www.geocities.com/mdmfoo/pls.html

[Guest guest]

Steve,

A lot of us have problems with the cold making our already stiff muscles

even stiffer. It makes them contract in an effort to warm them, but it

has the effect of making us off balance and increases our chances of falling.

About Rolfing: Don't do it. It can be a very painful experience for

muscles that don't like pain. It involves deep muscle massage and Rolfers

use their elbows to really get into the deeper muscles. This may make your

muscles stiffen even more. Try a gentler type of massage first to see how

it works. Rita Hollingsworth recommends Reikei. I would also look into

Healing Touch. Most of the time in Healing Touch, you are not touched.

The person doing this type of therapy is taught about the Eastern theories

of body chakras and can actually "feel" where there is a blockage of energy

in your body. They will concentrate on that area having you use visual

imagery and them moving their hands around the area, giving you their positive

energy. I know it sounds weird, but research shows that it works. They

will take a history of your problems, especially the physical and emotional

ones, so be prepared for that. If you live in a larger populated area,

you may be able to find a practitioner in the Yellow Pages. I live in a

small area and there is a person near me who practices it. Someone in the

same office practices Reikei. They are sisters, both nurses. Check out

people who may have experienced the practice and whom they used. It may

do wonders for your physical and mental self.

Welcome t6 the group. Feel free to ask any questions you have. Someone

will have an answer.

Mike Gray

nokonwd@... wrote:

Hi folks; I have been lurking your board for several days trying

to

build up courage to post. I guess I'm somewhat confused:

Explain;

I have been tentatively diagnosed with PLS with symtoms of which

some

of you share. I say tentatively because my neurologist said it

may be

PLS but he will see me again in three months. I am a 60 year old

male

without any history of illness until now. For the past 3 years

I have

been feeling slight changes in my ability to function normally

which

I attributed to a change in my everyday activity. About that time

I

gave up my construction business and kind of semi retired.

Naturally, as with all of you, the news is disturbing and I find

myself looking in every direction for some answers as to what I

can

do to make life bearable.

Does anyone know or have heard about Rolfing? It was suggested

that

I look into it as a means to stay limber.

My left leg drag is increased substantially in colder temperatures,is

this familiar to anyone?

I would appreciate any info.

Thanks Steve........now that wasn't so bad

[Guest guest]

Hi Steve:

I also have been exposed to Reiki, and it is wonderful. I look so

forward to my treatments. Last month when I had a doctor's appointment,

I had a problem with pain in my left foot. I had a treatment that

morning, she concentrated on the foot, by the time I got to the doctor's

the pain was gone, and I really had to feel around to find where the

foot hurt. I felt like a fool. The pain was still there, but not as

severe.

Good Luck

Rita

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

[Guest guest]

Steve,

I have had a lot of problems with my neck and shoulders. The only thing that really works for me is myofacial release. My physical therapist does it. I though I was just going to have to get used to my neck being so painfull as nothing seemed to work. I've been seeing this PT for about 3 months now and my neck pain (of 10 months) is nearly gone! Even my doctor told me I couldn't expect much relief due to my degenerative arthritis in the neck. But the myofascial release stuff had done the trick. And insurance is paying for it.,