Re: new to ALS group

[Guest guest]

Hi Deb:

Am glad you found our group. It has been of tremendous help to me over the last

couple of years whether it be for information, laughs or a shoulder to cry on.

They are great.

The symptoms and progressions are so different in us all that it is hard to

pinpoint an answer to your question.

I was first diagnosed with PLS in May, 2002 and then diagnosed with ALS in July

2004. For PLS it was progressing fast and for ALS it is progressing slow. Up

until November I was still driving my Van and probably still could, but my

children convinced me to cease driving to put their minds at ease. My legs

remain fairly strong (although I use a 4 wheel walker all the time & a

wheelchair for longer distances) but my swallowing, speech and breathing have

gotten worse.

Like I said and I am sure others will agree, everyone is different and we all

hope for SLOW PROGRESSION.

Take care.

Jo (Northern Ontario)

new to ALS group

My husband was dx with ASL. He is only 53- still able to work and

drive. Need info on others- after dx - how long before they had to

give up driving and work. He takes orders via a computer. Right now

he only has bad weakness in his right hand, arm and shoulder.

Please let me know how this disease how progress in others.

Happy Holidays.

Deb Ross

[Guest guest]

Deb

There are several ways you can get the ALS DX: possible ALS, probable

ALS or confirmed ALS. I got the possible ALS DX 5 1/2 years ago

first showing up as bulbar or speech and swallowing problems.

Possible ALS by definition includes PLS and any other yet unnamed

motor neuron diseases. The bulbar palsy improved and I coasted for a

couple of years. Then in the last 9 months I developed a limp, went

to a cane and then on to a rolling walker. Bear in mind 5 1/2 years

ago I was told I had 6-18 months to live....I'm still living...quite

well!!!

Now a friend of mine was also DX as confirmed ALS at the age of 67 in

May of 2003. He lost his battle 11 months later. He had the textbook

aggressive form. What we all dread.

Do you remember if they said confirmed or possible? I know its so

hard the first time you're told. Your mind freeze frames on the ALS

part.

I'm 51 now. I was forced out of work immediately when the company

heard I had ALS (pre- HIPPA and privacy act). If I hadn't been in

pharmaceutical sales I could have continued working for another 4

years. But hey I wouldn't have made it to Jamaica, Cozemel, Grand

Caymans, Key West and 6 beaches in Southern California. I'm still

driving and now living solo. I fold and throw my rolling walker in

the backseat and take off anywhere I want to go..be it 2 or 12 hours

away. I walk noticeably slow but I get where I want to go.

If you read the posts from earlier today, you will find one from Fern

who also has ALS. She talks about selling her car and getting a

scooter. She also gives her diagnosis date.

As the head of the ALS Clinic in the Cleveland Clinic said, no one

can tell what will really happen next...motor neurons have a mind of

their own...they can even spontaneously heal themselves if they want.

By the way with ALS in the DX Medicare now grants immediate

disability when you file. Not so with the PLS DX.

Eva in WV

>

> My husband was dx with ASL. He is only 53- still able to work and

> drive. Need info on others- after dx - how long before they had to

> give up driving and work. He takes orders via a computer. Right now

> he only has bad weakness in his right hand, arm and shoulder.

> Please let me know how this disease how progress in others.

> Happy Holidays.

> Deb Ross