Co-pilots! Couples retreats, education, compassion, advocacy, support! All the reasons to take them along are here.
So happy to read these responses. It's so important for our loved ones to be apart of this journey :)
Thank you all for sharing. Things are better for me too now that hubby has gone to lectures with me. I'm going to get my kids to one this year hopefully :)
-shell
My husband and I went our first MS support group this past Wednesday.
The MS society was there recruiting for advocacy programs so we didn't get the support group part.
There is an MS walk coming up in April here in CT and we plan on getting involved somehow.
Kerri
I haven't but I have invited my husband. There are always lots of family and friends with the MS'ers there.
Maybe when the time is right and the subject interesting, my husband will go with me.
Julie
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.
Alex
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.
-Kelly
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!
Hello Shelly,
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.
Blessings
Alex
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.
No seminars available in our area but do take DH with me to neuro appointments. He always says he learned something new. Too bad they can't have the info available a newly dx event.
We both learned lots, as my MS adventure just began last summer :-) She has been an amazing copilot on this journey.
Excellent! I shouldn't of titled that - because any lecture/seminar, etc. is great just so long as someone besides us are plugged into this disease :)
Did gf say she anything once it was over, i.e, that she learned anything new, etc...?
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 :-)