I am an overly emotional person, just the way I’m built. I often wonder that I’m not doing enough to support everyone Is there a need for a sponsorship program? It’s just a thought. To help building a ramp, giving a physical hug or what is needed to someone I need. Does this support already exist and I don’t know of it. Most of the time here we just need to vent or get suggestions to our problems. I see some that I think need more contact and it bothers me, as I should be doing… read more
@A MySpondylitisTeam Member
Some random thoughts and ideas for you on finding resources and creating a support group...
I Googled "State of Virginia, Social Services". 2-1--1 VIRGINIA Popped up with links to a variety of services.
In Central Missouri the Central Missouri Community Action Agency covers 8 counties in it's Resource Guide.
Also in Missouri, United Way "Community Options and Resources" offers a resource directory.
My point is that where ever you live in the U.S. you can Google local or state "Resource Guides" to find listings of services in one place.
I also Google "Community Action Agencies" or "United Way" in the State or County I want info on. I've learned those two organizations provide social and provider services to middle and low-income individuals, families and seniors.
My work as a Clinical Gerontologist often involved locating caregiver resources for aging parents across the country with adult children in California. You have to enjoy the paper trail, otherwise it becomes tedious!
I think I understand what you are proposing; something like a phone buddy to people diagnosed with spondylitis who need more support than the "typical" website user.
Have you thought of a Conference Call Support Group? Every other week on a Tuesday or Wednesday at Noon (Pacific Time) members of your Support Group call a toll free number to link-up. You'll need to limit the number of people to less than 10 so everyone gets a chance to talk. Six to eight participants is a manageable number. Keep the call to 90 minutes. As the facilitator you can sign up with any free conference call service provider. Since everyone on this website has access to computer technology or cell phone you won't have to worry about that.
Hope these hints are helpful!
@A MySpondylitisTeam Member 2015 that would be great.I bet where you live (big enough of population) you could advertise and get people to join a group you start
The only places I’m able to find support/answers is this site and my FB group. I agree that having an in-person support group would be wonderful tho.
@A MySpondylitisTeam Member Perhaps that need to work toward has something to do with befriending someone not afraid to speak in public while you do the background work. Just a thought.
I have a lot to give and am frustrated in not being able to give it in such a hurting world. My limitations compromise my ability to let my strengths pour forth...further compounding my limitations.
My thought is, each of us just need to connect with the right person who counters our limitation. jmho
I guess I'm not clear on what you want to put together. Many of us suffer isolation, but not much can be done about that I think.
Human contact is a primal need. Therapeutic Massage really helps many of us, but its unaffordable on our disability budgets. Perhaps some free coupons for starter-uppers?
Friends drew my attention to a spondy conference early this month. I wanted to go. It looked like it was just getting started though. Not much info for the amount of effort it would take to go so far. I would like that If there were real support. I wouldn't miss it!
Friends have MS. They have a huge conference with lots of topics and venders. My friend brought me along and I was able to get a cooling vest and other unknown items specific to our needs (that just so happen to be common needs with MS).
Friend also brought me along to an MS dinner sponsored by pharmaceutical company. Each month they offer a very nice meal. Some say it's their only "date night" they can afford (free) and feel comfortable "out." Some people with MS have severely deteriorated and are wheelchair bound and use big bibs when they eat or even have help feeding themselves. I felt comfortable going with my wheelywalker. I fit right in. It was also affordable in my new below poverty lifestyle. REALLY GOOD FOOD TOO! The pharmaceutical company presents slides on statistic of trials and outcomes of a new drug for MS. Looked similar to our situation. I would have loved to ask questions, but I was a guest, not a sufferer of MS. People with MS have an immune malfunction component too, like spondy does. Maybe some of their medications can work for spondy? That kind of set up would be AWESOME to attend for spondy!
MS has been around a long time and is better understood over the years. If we had a support system like that, gathering data, comparisons in treatments and outcomes, network of participants, real conference and monthly educational dinner out, that would be AWESOME! We could learn so much together and make face-to-face friends! I certainly never heard of a cooling vest! Maybe I could have stayed near family and kept all my stuff and BEEN FUNCTIONAL in Florida rather than have to run for my life! A cooling vest helps me be functional when my autonomic system can not self regulate. Wish I could have tried it before I lost my life with family.
Just thoughts. IDK if that's what you were looking for from us...