Gary,

Congrats on taking the time to be a part of stroke club planning.

I've pondered the question of why there are not more stroke survivors planning stroke club meetings. I can think of several reasons.

Many stroke survivors cannot physically get to meetings. Many do not (yet) have the mental capacity (?) to deal with meeting such as a planning meeting. Do you have a database of survivors you could survey? Just a thought.

Good luck to you. Look forward to being kept informed of your progress.

Isn't it interesting how complacent people can be? It is SO hard to get people out of their daily routine, and yet they claim to be bored. What a great project for you to be involved with, Gary, & someone must have done a study if they came up with stats onstroke survivors. Word will get out & next meeting you may have some other survivors with you.

I doubt if there is a stroke survivor/caregiver group here in our city; I'll have to investigate.

By the way, those recipes sound dee-lish! Will definately give them a try.

Watching the football game today & its snowing...looks so pretty. It's probably snowing up your way, too. I lived for years in Ontario so I'm well acquainted with snow. We get snow in this part of AZ, but usually no more than a total of 3-4 feet.

Enjoy,

Marilyn

Gary:

It's great that you are starting stroke group in your area, initially I was looking so hard for it, after I found this site, my need to chat with other survivors hve npt been intense anymore.

but good luck in forming stroke group, and it might be matter of time before you will be stating that you are 2 busy in coordinating your local group eh

lots of love

Asha

Gary,

It is wonderful that you have the willpower to get out to meetings.

I believe recognition of survivors groups is very necessary.

I found ottawa Stroke Survivors myself, online and i was never referred.

There are about 50 members in the cityof ottawa,but I'm sure there are many more survivors who would be interested in coming out to monthly meetings and getting involved,but they are not aware.

Best of Luck to you in having a group in your area.

Take Care

lorrainelm

Hi Gang

Thanks Lin, Marilyn, Asha and Lorraine for your posts and your encouragement.

I agree with all of your thoughts. Actually Lori told me that it is next to impossible to get names of survivors due to the fact that the information cannot be shared by hospitals, doctors offices and Pharmacies because that information is confidential.

So that does pose a bit of a problem. However comma there is no reason that we can't share information with others as they become known to us.

So to that end I guess I should begin to build a database of names.

I know of at least three other survivors in this area so that will give a start.

Every journey begins with a single step they say.

Again thanks for your encouragement.

Smiles

Gary

Sorry, the answer is: People don't want to come. At my stroke support group, brochures giving date, time, location and speaker are sent for 4 months (had been sent monthly also) and you still only get a handful! They come maybe once and then leave an don't return. Why? There's ther reunion. Hundreds of invitations are sent to everyone who's been a patient at the rehab. Everything is paid for for the survivor and a guest (spouse) and even parking is paid for and there are young mrn who park the cars. Wonderful catered meal, wonderful program. Maybe 100 come. (From years and years) Why? I haven't figured it out. It appears to be international too.

Maybe they feel badly that they haven't made enough progress - but how many could that account for - couldn't be all.

Any other ideas?

On the 15thwe are having a Christmas party with just food, games and conversation and no speaker. Bet only a handful will show up.

I agree, Phyllis. A professor at Don's speech clinic and I tried to start an aphasia support group/club the summer before last. We kept the meetings going all summer, every two weeks, hoping people would show up. No more than four people ever came including Don.

Gary, It takes a lot of time and effort to do mailing lists, keep a facility room available, line up speakers or topics to discuss, etc., etc., to get a group up and running. Good luck with yours.

Lots of people who need support groups close themselves off from going for a variety of reasons and still others out grown the need for them. I've heard every excuse from "I'm not like those people" to "I'm not going out of the house until I get my body working right again" to "I can do this on my own. I don't need anyone's help!"

Jean

Interesting dialog you got started here in your blog Gary..

Was noticing..that we have over 4100 registered users here, and my impression is that we have about 30-40 active people in the forums, about 20-25 active bloggers, both groups comprise the same people and that's about 50/50, survivor/caregiver. Whats that.... about half of a percent? So 1,000/5 years on PEI equals about 5 active people if you think were talking apples to apples and not apples to oranges

Not trying to start a discussion on why or why not, just an observation or two.

Good thoughts!

Tom

Hi Phil, Mum and Tom

I appreciate so much that you all took the time to post a comment. I am sure that your thoughts are all very true.

We know how difficult acceptance is let alone adjusting to the new reality. So to expect people to want to be social butterflies, mix with stroke survivors and admit that they could use some help to cope might just be a streetch.

But, that does not mean that we have to give up on them?

So to that end, I will continue to make myself available to assist in any way that I can to support the establishment and continuing efforts of local strokeclubs to educate, assist and support Islanders reguarding strokes.

Thanks all. I do appreciate your feedback.

Smiles

Gary

To add to Tom's statistics... I just check the stats on the number of viewings on the message board and from August 30 2005 to Nov. 29 2005, the number of viewing of topics on the message board totaled 85,416. Think about that. The 30-40 active posters that Tom talked about are speaking for a LOT of people who come here to read-only. What we do here matters.

Jean

Hi Mum

Right you are!

Smiles

Gary