Re: Another newcomer!

[Guest guest]

Jo,

Welcome to the group. I'm getting surprised at how many new members of this

group are from Canada, especially Ontario. I guess it's safe for me to

visit since I already have PLS. Come to think of it, before I started to

show my first symptoms, my wife and I visited Ontario. Hmmmm....

You will enjoy this group tremendously. There are several loving,

compassionate people here who have great attitudes and tremendous hope for

the future.

I would like to welcome , also. You are an inspiration for us. I just

wish you had developed this disease after 40, like many of us have. 23 is

way too young. Zsolt may be writing you, if he is still able. Haven't heard

from him for some time. He is very progressed in his PLS, but is a

marvelous person with whom to talk. He, too, is very inspiring.

By way of introduction: My name is Mike Gray, age 54. I have 4 children and

two grandchildren, both by my oldest child, a daughter. Her name is

Camille, 34. Mark is next at 32, then Josh at 24 and recently married, and

Adam, who is 11 and 1/2. I first showed signs of PLS or something in 1994

or perhaps earlier. It is difficult to tell. I was hospitalized the first

week of Feb. 1995 and have had to use a walker ever since. I have been

using a 4 wheeled walker for about 10 weeks now and have found it very

helpful. I am able to walk easier with a longer stride and higher step. At

least when I'm healthy. Fevers and cold weather make my spasticity worse. I

am one of the lucky ones. My neurologist, whom I see again next week, has

said that I am in better shape now than when I first saw him. If he only

knew.... I guess I am doing better. There have been no more ER visits for

several months and no falls for 12 weeks. I believe I have healed all the

bruises, hematomas and cuts from all the previous falls. I have had to have

plastic surgery on my face 3 times from some major falls. One of them

resulted in a 40% loss of vision in my left eye due to optical nerve

damage. But, life goes on. We with PLS must accept that we have to change

our style of living, not necessarily our lifestyles. I believe in a good

attitude toward life and faith in God has helped me more than anything else.

Well, I ramble. Everyone else in this group has heard my story and have

probably already hit the delete key.

Like says, " Take gentle care of yourselves. "

Mike

At 10:43 PM 8/25/02 -0400, you wrote:

>First off I would like to introduce myself:

>

>NAME: Joanne AGE: 59 Resident of Northern Ontario

>

>I was recently diagnosed with PLS this past May (3 days before my Son's

>wedding) and I have to say that even though it wasn't the best news, I was

>glad to finally have a name to what was happening to me.

>

>A year ago this past January I had surgery for spinal stenosis which was

>strangling the spinal chord and they suspected this was causing my leg and

>left hand problems. The doctor in Toronto said he couldn't fix what

>damage had been done but he could halt the progress of the severe

>spastisity I was experiencing. I had a fusion done on C3-4-5 & 6 and

>everything went well although it was a long recuperation period. I

>started therapy and am sad to say things just kept getting worse. On my

>return visit to Toronto my Neuro-surgeon referred me to the MS Clinic as

>he said there was definitely something going on to cause this

>progression. To make a long story short - a group of Neurologists gave me

>a diagnosis of PLS.

>

>I am a very positive person and am taking the attitude " make hay while the

>sun shines " .

>

>I have graduated to a walker now (after several falls) and am finding it

>easier to get around than unsteadily using my cane.

>

>My Mom is 84 and has severe emphasyma and pulmonary disease and is still

>living in her own home. I am still able to make up her dinners and freeze

>them so she just has to heat them in the microwave. This disease sure has

>lousy timing as I want to be there for my Mom and I am no longer able to

>help out the way I used to. (I forgot to mention that I am an only child

>so I am all she has.)

>

>I have tried Baclofen and Zanaflex but am hyper-sensative to them so I am

>trying natural products being Magnesium. Haven't seen any great results

>but will continue awhile longer to see if I notice any improvement. I

>also have fasciculations in the upper and lower extremities and get

>charlie-horses in my calfs something fierce when I stretch out in the

>morning.

>

>There is one really weird thing that happens to me and that is when I

>laugh (which I like to do a lot) my hands become very weak and I can't

>even hold a small glass or tear open a sugar packet. Has anyone else ever

>experienced this?????????????

>

>I have two wonderful children: Tammy - 39 and Rob - 33. They are both

>married and my daughter and her husband have blessed me with two

>granddaughters: - 8 and - 6. My daughter lives in Marathon

>and my son in Toronto.

>

>I have probably bored you enough but I do want to say how wonderful it is

>to finally find a support group. My heart goes out to you - you

>are a definite inspiration to this group with your strength and

>determination. You will be in my thoughts.

>

>Thank you for reading my story and I will look forward to hearing from any

>of you and answering any questions you may have.

>

>Take care

>

>Your new pal: Jo!

>

>

>