Re: Questions about support groups

[Guest guest]

Hi Dale,

I know how it is in the beginning. Panic, depression, the whole

works. But life does go on and it does get better once you adjust

to the diagnosis.

The good thing is that PLS or HSP will mean a slower progression.

That does give you time to adjust to things. As devastating as the

thought of slowly losing your walking ability is, you'll soon learn

that there are many ways to adapt and enjoy your life.

I go to some of the ALS support meetings in our area, but I pick and

choose the ones I go to depending on the topic.

You probably should wait a while before attending one of their

meetings. Get on their mailing list. Then when you are ready, and

they are having a topic that might be interesting to you, you can go.

Where do you live? We have gatherings of PLSers and HSPers all the

time, all around the country. That would be good for you.

We are having a gathering in West Virginia next week and one coming

up in Phoenix in June. We'd love to meet you and your wife.

[Guest guest]

Hi Dale,

I know how it is in the beginning. Panic, depression, the whole

works. But life does go on and it does get better once you adjust

to the diagnosis.

The good thing is that PLS or HSP will mean a slower progression.

That does give you time to adjust to things. As devastating as the

thought of slowly losing your walking ability is, you'll soon learn

that there are many ways to adapt and enjoy your life.

I go to some of the ALS support meetings in our area, but I pick and

choose the ones I go to depending on the topic.

You probably should wait a while before attending one of their

meetings. Get on their mailing list. Then when you are ready, and

they are having a topic that might be interesting to you, you can go.

Where do you live? We have gatherings of PLSers and HSPers all the

time, all around the country. That would be good for you.

We are having a gathering in West Virginia next week and one coming

up in Phoenix in June. We'd love to meet you and your wife.

[Guest guest]

Hi Dale:

I can only give you my personal opinion and is that I was diagnosed with PLS

this past May and I stumbled on this group shortly after and it was the best

thing that could have happened to me.

There is a wealth of knowledge here and great friendships to be made. We do

get silly and do the joke thing but you will always find a sympathetic ear

and people to listen and help no matter what.

Maybe you and your wife should give us a try.

I am sorry you have received this diagnosis but you will find out from us

that life is worth living and that there are people who truly care about

your situation.

If you ever wish to e-mail me directly you can joannetaniwa@...

Take care.

Jo!

Questions about support groups

> With just being diagnosed with pls/hsp my wife and I are looking for

support

> groups, the closest one we can find to this is an ALS group. We are

> debating whether we should go to this or not. Would going to this group

be

> helpful? I guess what we are worried about is right now we are still in

> " panic " mode, everything is coming apart it feels like and going to a

group

> that, well is going to have it's members die from the disease, would that

> make it even more difficult/depressing, (we are both depressed enough

right

> now, thank you ;-).

>

> thanks for any input,

> dale

>

>

>

>

>

>

>

>

[Guest guest]

Hi Dale:

I can only give you my personal opinion and is that I was diagnosed with PLS

this past May and I stumbled on this group shortly after and it was the best

thing that could have happened to me.

There is a wealth of knowledge here and great friendships to be made. We do

get silly and do the joke thing but you will always find a sympathetic ear

and people to listen and help no matter what.

Maybe you and your wife should give us a try.

I am sorry you have received this diagnosis but you will find out from us

that life is worth living and that there are people who truly care about

your situation.

If you ever wish to e-mail me directly you can joannetaniwa@...

Take care.

Jo!

Questions about support groups

> With just being diagnosed with pls/hsp my wife and I are looking for

support

> groups, the closest one we can find to this is an ALS group. We are

> debating whether we should go to this or not. Would going to this group

be

> helpful? I guess what we are worried about is right now we are still in

> " panic " mode, everything is coming apart it feels like and going to a

group

> that, well is going to have it's members die from the disease, would that

> make it even more difficult/depressing, (we are both depressed enough

right

> now, thank you ;-).

>

> thanks for any input,

> dale

>

>

>

>

>

>

>

>

[Guest guest]

Dale,

You have come to the right place. Being diagnosed with PLS is devistating but

not the end of the world. You will find this the most

informative,caring,loving,supportive and funny group ever. If you note the

posts for today, you will see that I recieved a wealth of information on a

question I had about chick peas. You will see that some people have researched

the issue, some have commented on their particular experiences and I'll bet I

get a post from someone who suggests I change doctors. (that's all in jest...I

am just wondering who it will be).

Ask away any questions you may have, share any feelings of fear, anger, denial,

etc., we have all been there.

Please give us some more info...who has been diagnosed, where do you live,

symptoms, etc.

Hoping to hear from you.

Cookie (from upstate NY)

--

If you get up one more time than

you fall, you will make it through.

A friend loveth at all times

Proverbs 17:17

> With just being diagnosed with pls/hsp my wife and I are looking for support

> groups, the closest one we can find to this is an ALS group. We are

> debating whether we should go to this or not. Would going to this group be

> helpful? I guess what we are worried about is right now we are still in

> " panic " mode, everything is coming apart it feels like and going to a group

> that, well is going to have it's members die from the disease, would that

> make it even more difficult/depressing, (we are both depressed enough right

> now, thank you ;-).

>

> thanks for any input,

> dale

>

>

>

>

>

>

>

>

[Guest guest]

Dale,

I go to an MDA support group, this town (New Orleans) is not big enough to

have even an ALS support group and I find it uplifting, not depressing. I

think you would find the ALS group that way too. There will always be

people at different stages of grieving about different things they have lost

but there will also be people who are up and cheerful despite what they are

looking forward to. We have 1 lady with ALS who is the sunshine in our

group. Everyone says hi to her and looks forward to her being there. She

can no longer speak and be understood by anyone but her sister who comes

with her. It is the high point of her month and she gets her hair done that

day too. She has a smile for everyone and yet she has cried at times when

she becomes angry at what she is losing. She has to be fed through a tube,

she cannot hold her head up or move her arms, she is in a wheelchair and has

been fighting every step of the way for 7 years. She has a beautiful caring

family around her (all have come at various times) and you realize thelilfe

you have is not as important as how you choose to live it.

There are others with other md's, like CMT and you can learn a lot from

every one. There are also caregivers therew that can talk about your wife's

concerns. The facilitator of our group is an OT instructor at LSU Medical

Center and brings students quite often and they help people with problems

too.

Give it a try! It is definitely not a depressing experience.

Regards, Sue Ellen

[Guest guest]

G'day Dale

The ALS support group may be helpful to you but you are right to be

cautious. I was initially diagnosed with ALS/MND in February 1997 and soon

after attended the State MND Association as a volunteer one day a week. My

aims were twofold, firstly to learn as much about the disease as soon as

possible and secondly to help the Association meet its objectives of

providing support services to patients, their carers etc.

At that time, whilst struggling with my own reactions to the diagnosis, I

did find that dealing with the deaths caused by the disease added to my own

burden of depression. The related stress also caused increased tiredness.

So I suspended my volunteering for a year or so.

When I returned to the volunteer's role and actually attended the Patients &

Carers meeting I found them to be beneficial. I had accepted my own

diagnosis by this time and had learnt, that in my particular case,

deterioration was moving very slowly. It was clear by then that the 1-3

years prognosis did not apply to me. At the meetings I met people

struggling with serious physical problems who displayed great courage in

living their daily lives who, " if you like " , showed me how strong the human

spirit is in adversity. Some of the most brilliant smiles are possessed by

members of the group, even when the power of speech is no longer present.

Humour, courage and caring typify the members of the group.

So, I guess Dale, I would suggest that you delay attending the group whilst

you come to terms with your own situation. Nevertheless, there are many

issues, emotional and practical, that you could get support with from the

group on an outreach basis. So I suggest that contact the group and seek

their help on your own terms (ie tap into their support services but delay

wider contact until you are ready to do so).

Cheers

Jaycee.

Questions about support groups

> With just being diagnosed with pls/hsp my wife and I are looking for

support

> groups, the closest one we can find to this is an ALS group. We are

> debating whether we should go to this or not. Would going to this group

be

> helpful? I guess what we are worried about is right now we are still in

> " panic " mode, everything is coming apart it feels like and going to a

group

> that, well is going to have it's members die from the disease, would that

> make it even more difficult/depressing, (we are both depressed enough

right

> now, thank you ;-).

>

> thanks for any input,

> dale

>

>

>

>

>

>

>

>

[Guest guest]

Dale, welcome - you and your wife - to the PLS site. This is my

saving place, and it will probably help you as well. And I can

relate to what you have said since you were singing my song.

I hate to tell you this, but we all went around about trying to get

a diagnoses. A few lucky ones knew right away, but in my case it

took two years.

I was first told I had ALS. That frightened the crap out of me

since I had just lost a friend to that horrible disease. I knew what

I was in for. Talk about depression, I lived like I was dying for 3

months. I cried, tried to give some of my belonging away, and even

thought about the 'S' word.

My next doctor visit was a spinal tap to rule out MS. I patiently

waited for my doctor to call with the results, but after three

weeks, I reluctantly called him. I was afraid to hear that it was

all clear and negative, since that would give me ALS again. The

report came back abnormal, and I was so happy I cried. (If you

could believe and abnormal spinal fluid could make me happy) It was

still a relief and my new dx was MS. Later I spent a week in the

hospital on solumedrol, (spelling) with no noticeable help. That

led the doctor to believe I had something different. I still had the

fear of ALS hanging over my head.

I think he knew I was fed up with his guessing game so they sent me

to s Hopkins and I was dx with ALS/PLS. I've held steady, with

only slight changes and no muscle loss (thank God), so I feel

settled with the PLS dx. and I feel sure that is what I have.

Through all that, the PLS'er were with me all the way. They pulled

me up when I was down. They gave me hope, when I thought I had

none. I'm sure what ever you have, this will be you home, like it

is mine.

P.S. I hope you dance again.

Love,

Donna

> With just being diagnosed with pls/hsp my wife and I are looking

for support

> groups, the closest one we can find to this is an ALS group. We

are

> debating whether we should go to this or not. Would going to this

group be

> helpful? I guess what we are worried about is right now we are

still in

> " panic " mode, everything is coming apart it feels like and going

to a group

> that, well is going to have it's members die from the disease,

would that

> make it even more difficult/depressing, (we are both depressed

enough right

> now, thank you ;-).

>

> thanks for any input,

> dale

[Guest guest]

HI DALE,

WELCOME TO THE PLS GROUP.

I AM THE CARE GIVER FOR MY HUSBAND DON. HE WAS DX WITH PLS IN 2000 BUT

CHANGED TO ALS IN SEPT OF 02. I THINK YOU WILL FIND ALL THE SUPPORT IN THE

WORLD RIGHT HERE.

WE HAVE JOINED AN ALS SUPPORT GROUP ON LINE AND WE GET A LOT OF INFORMATION.

BUT THERE IS NOT THE PERSONAL CONNECTION THAT WE HAVE HERE. IT IS THE

DIFFERENCE BETWEEN NIGHT AND DAY.

LEARN TO TAKE ONE DAY AT A TIME. IF THAT IS TO MUCH TRY ONE HOUR AT A TIME.

PLAN AHEAD FOR CHANGES AS THE COME. PLEASE DO NOT RESIST THE NEXT STEP WHEN

IT COMES TO SAFETY. IN OTHER WORDS DON'T LET YOUR PRIDE GET IN THE WAY OF

YOUR SAFETY AND THE SAFETY OF YOUR CARE GIVER.

I TELL EVERY ONE THAT I HAVE A ROPE THAT I HAVE TIED A KNOT IN AND I AM

HANGING ON. AS LONG AS I HANG ON SO DOES DON. IF I SLIP JUST TIE A NEW

KNOT AND GET A NEW HOLD.

WE WISH YOU THE BEST,

LOVE

BONNIE - OHIO