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sypport group?save me!


hpoirier

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,I just got back from the support groupin my area.It was not what I expected.The group is very unorganized and super informal.The acoustics in the room were terrible.Several of us have hearing problems and it was impossible..Everyone talks at once.As a new perso, They sared me because one lady decided to tell me that.If I don't have movement in a part within the first 3 months forget it,.It won't come back.....from her experience.She was 10 years pos-stroke and can not move her arm still.Then some of the other people tried to make up for it by saying they did not believe that yada,yad,ayada Still,It left me shell shocked.There was a person who had had a stroke at 17years old (30 years ago).The group has been on the westIsland for 20 years and no one knows about them.Crazy.They start with simple stretches and leg movements,which was goodbut I was not impressed at the rest.I will probably go back because I have no where else but It did not give me a positive feelingI wish I could figure out how to do chat on this site without having to turn off my firewall I really need you guys!!

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Holy Unsupportive Support Group, Batman! :giggle:

 

Is there any other group in your area or that may be a bit of a drive and still worth it.

 

 

Darn I feel for you.

 

Considering the motivated people here who continue to see imrprovements years, much less months, later - don't give up hope.

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I have not found local support groups very helpful either for many of the same reasons you decribed. Have you tried contacting Hostbonnie, the chat administrator, to see if she's got any suggestions to help you get into chat? In the meantime, the blogs are a pretty darn good support group and we're here 24/7.

 

Jean

 

 

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I'm sorry that you are having trouble. I have been attending a stroke support group for 3 years and the attendance is close to nothing. This year the group was divided into aphasia and other. I attended both because I was to meet a friend with aphasia who did not show. They are held one after the other. Still each group isn't large. The aphasia group is larger because the groups are run by speech therapists and while they also treat others with speech problems, those others like myself get our therapy and it usually doesn't last long and then we are gone.

 

They asked what the groups wanted and took notes.

 

We do not have any exercises but we did have speakers each time. This year only 2 are planned; one from pharmacy who can answer drug questions and one from dietary. I know it's important but plain getting together and discussing our problems is better. People can suggest things which may help others.

 

Is there any way you could suggest things which you would like to see - programs, different speakers etc. and see if others would also do the same? Think you're going to perhaps speak up and make some points.

 

As for that "stupid" woman, (not nice to say, but true) tell her it's too bad she did not take advantage of the therapy she got and tell her that you know hundreds who have made progress and are still making progress years later. Don't let someone try to be negative with you. Tell her that you know it takes time but you don't intend to give up as she has probably done. You, nor others, don't need the negativity of people like that.

 

Makes my blood boil! :Tantrum:

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my standard advice to new people is to believe everything positive that people tell you;but nothing negative - i was told i wouldnt live through the first night, wasn't strong enough for rehab, would never live alone again, would have no improvement after a year - wrong on all counts - ive lived alone for three years and am still seeing improvements all the time - so that woman's just sad and bitter and believes things that aren't true, i'm sorry she's spreading that negativity, we need all the support we can get!!!

 

come here next time you need to see the other side,

always,

teal

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Hi Heather, I am 3 yrs post stroke, still seeing some improvements, I started walking better my second yr. I had one Dr tell me 18 months and another improvement and progress will go on for many years.

 

What type of firewall and antivius program do you have? You may need to change your settings to allow pop ups from

1. www.strokenetwork.net

2. strokechat.net

 

you may need to go into your control panel and on internet settings tell the settings that these 2 sites are okay.

 

I will try to find better directions for you, but I need to know the antivirus program and which firewall you are using..

 

Also you need to download the sun java softwear to run the chat program and occasionaly update the java softwear. www.sunjava.com

 

Bonnie..

please feel free to e mail me. I am not a computer whiz but will try to figure something out for you.

the other way into chat is from your search bar www.strokechat.net

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Okay I have Norton Antivirus also. I think it did pop up and ask me if this site was ok and I said yes to allow it.

 

You may need to go to your internet settings and type in to the sites to allow

www.wtrokenetwork.org and I also typed in www.strokechat.net.

 

I dont have any problems getting in. If you are still having difficulty let me know, try to write down the error message and I will try to contact a computer tech. Or Steve may be able to answer the problem through one of our techs.

 

Bonnie

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