What kind of stories do you find inspiring or hopeful?
What type of research would you do if you could?
What is important to you and helps you deal with MS on a daily basis?
What topics seem to be forgotten or taboo?
I have some ideas brewing and just want to brainstorm for more ideas.
Please leave your thoughts in the comments section or feel free to email them directly.
good questions!
ReplyDeletei am most interested in knowing how others cope with the symptoms of MS day to day.
the stories i find most inspirational are those which tell the truth...not some buttered up self congratulatory version...but the raw truth.
the research i would like to do would involve looking at the gut connection to these auto-immune diseases and also connections to autism and bipolar disorder.
dealing with MS on a daily basis...knowing how to predict and plan for symptoms. not sure how one can do that but i would like to try. and...how to help stay healthy despite the MS.
the topics which seem taboo are using alternative methods...herbal supplements...things of that nature. talking about the impairment of cognition. talking about mood changes. talking about sex with relation to MS. and talking about the future.
I've had a flare-up building for the last two days. When this happens, I cannot do everything I am signed up to do, whether it is play in my band, get work done or freakin' make the bed. I feel unstable, and I become a bit unreliable. Yesterday, I really wanted to quit the two bands I'm in, drop out of my online keyboard class and not make any commitments whatsoever. The problem with that is, when I do have the energy, those are the things I want to be doing.
ReplyDeleteI don't know that there is anything to be done, but I'm interested in hearing others talk about how they manage their life.
I want to understand more about the MS meds and what brings people to use them. I am under the impression that they are all still "experimental" and new so I am wondering if my impression is right and if it is, what makes people decide to take the drugs.
ReplyDeleteHi! Lisa
ReplyDeleteI wish I could find more discussion about symptoms relating to emotions and cognitive function. These are the two I struggle with most.
Thanks for asking
Bye
Carole
I want to dig into kick backs, trace the money, understand why the Natl MS Assoc. seems to be sold out---what are current figures on donations/research ratio? What happens to all the drug/MRI data that doctors and drug companies in the U.S have collected? WHERE do "researchers" come from? Why does MS have no telethon or star studded donation drives that reach millions via TV? I want PROOF that any of the MS drugs slow progression. Do doctors keep data and if so who do THEY give it to? OR do only the drug companies keep data? Any stem cell success stories around, besides one or two? Where are people with MS who are elderly? What has happened to Annette and Teri? HOW do "they" KNOW you get MS by age 15? Why are stores that repair power chairs/scooters so few and far between? Why do so any medical people know so little about MS? Do medical students get just one chapter? How do so many places get away with skimping on ADA requiements? Why is it ok that cities don't have taxi cabs w/lifts? Or if they do, why is it ok that you have to wait an hour for a pick up? Once you are declared permanently disabled by your Dr., why can ins. companies insistt you "re-certify" each year? (and city vans services, any service---your status is not going to change!) How do people with mild or benign MS get to advertise drugs? As if their case is thanks to that drug? Why aren't hospitals,clinics, private practices, forced to have LOWERING EXAM TABLES? Why don't we have a World MS Org. bringing ALL the research together?
ReplyDelete