It wasn't specifically for newly diagnosed, but my MS center has an annual symposium. The center has both a research and a clinical component. At the symposium they presented "state of the Center" info. My girlfriend was an enthusiastic attendee :-)
Not my husband but a close friend has attended the Centre without Walls MS symposium in L.A. funded by the Nancy Davis Foundation, which is held annually the morning after the Race to Erase MS gala. It was helpful to have her there and we had a good discussion afterwards about the info presented. This is the only session of its kind that I attend.
My husband attended the first couple of my appts with my MS specialist when I needed the support. He would continue to come if I wanted him to but I'm fine going on my own. He always takes time off work to drive me to my appts; my neuro is out of town, nearly a 5 hour drive away.
He was really sarcastic once to my neuro when he thought my neuro was being condescending to me (neuro said something to the effect that I should be mindful that not every ache and pain I ever get will be due to MS, a valid point as I can see the tendency to relate every physical problem to MS esp when newly dx'ed) to which my husband sarcastically replied Don't worry, she won't bother you every time she catches a cold. I tried to shoot him a dirty look to zip it but as I had severe double vision it was lost on him, lol. So while I thought it was sweet of him to be sort of protective of me, I didn't think he would be helpful in building the relationship I needed to build with my neuro, so I told him he didn't have to come anymore. Though he would if I needed him.
Yes, I took my wife to an MS event a couple of months into my ordeal. It really helped her understand what MS was and most importantly let her see people with a range of disabilities. About 50% of the audience were in wheelchairs or had walkers and there was one lady with a seeing eye dog at our table.
So extremely valuable to include partners in the process. My kids are a bit young to take but I will later on.
I'm always invite DH or my daughter or a sister to go along with me - sometimes they do, and other times they don't . We have a boatload of these live events in our area and they are almost always worth the time to attend.
It's good for them to go, that way they have heard the same info that I have about therapies or advances in research. Plus there is usually a decent meal to go with the talk.
Right now Gilenya is pushing the live talks all around the country. Be sure to check their website to see if there is one in your area. The normal format for these talks is the brief presentation on the particular therapy drug and then they open it up for questions of any sort that you can think of to address to the guest neurologist. It's a great way to learn more and hear different doctors without havea copay!
Sometimes my partner will go with me, and sometimes she won't. It just depends on what she has going on that day - and how important it is that I think that she goes to whichever MS seminar that it is.
My younger brother will also go with me. And other times I'll just go on my own.
My husband comes to some of my seminars and support groups. One of the best things we did was a couples retreat. He also attends things specifically for care takers where MSer's are not permitted. He now is involved in fundraising for the NMSS Society.
My brother and his wife traveled 4 hours to our annual meeting last year when I received an award. They also ran in the NMSS Turkey Run when they visited over Thanksgiving.
Copyright 1994-2016MedHelp International.All rights reserved. MedHelp is a division of Aptus Health.
The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only. It is not intended to be and should not be interpreted as medical advice or a diagnosis of any health or fitness problem, condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or course of action. Med Help International, Inc. is not a medical or healthcare provider and your use of this Site does not create a doctor / patient relationship. We disclaim all responsibility for the professional qualifications and licensing of, and services provided by, any physician or other health providers posting on or otherwise referred to on this Site and/or any Third Party Site. Never disregard the medical advice of your physician or health professional, or delay in seeking such advice, because of something you read on this Site. We offer this Site AS IS and without any warranties. By using this Site you agree to the following Terms and Conditions. If you think you may have a medical emergency, call your physician or 911 immediately.