Unfortunately like many others I can no longer get to a PPS support group. But in the past I've found them invaluable for the sharing of information, and learning that PPS symptoms are just that, and not personal failures. I've heard others say much the same too
When I lived in Southern California, I helped run a large post-polio support group in Ventura County. It was a great source of information, friendship and support. There is a support goup in my area, but they are more of a social group that meets only quarterly for lunch. They do not offer much in the way of information or support. There are only a few post-polio people living in this area and most do not have the same challanges as I do. I guess the smart people moved to the warm states... Support groups are extremely helpful and necessary in my opinion!
Hi, Michael - I Coordinate Polio Network Victoria (Australia) and recently did a little survey of what people got out of the 16 support groups going in Victoria. Check my website for their comments (head to bottom of the page for the attachment) - http://www.polionetworkvic.asn.au/polio-support-group/index.shtml
Cheers - Mary-ann
The only way to really help ourselves is to learn as much as possible about PPS and ways to conserve energy.
Local groups know doctors, physical therapists, etc. Many medical professionals suggest therapies that only make things worse, ie lifting weights to strengthen muscles. We need to educate ourselves in order to be sure we are getting appropriate treatment.
Also, support groups offer members a way to vent frustrations and discuss various problems. It is often difficult for someone who knows us over many years, to understand what is changing and why we need to adjust our life styles.
Since joiningthis group I've moved to a city where there is no support group for PPS. I phoned the state orginization, and they are agreeable for a PPS group to be set up here. I sugested a venue which is easily accessed by wheelchairs. Does anyone want to share ideas on how to start off a new group?