Should a veteran MSer meet a frightened newbie?

[Thinkimjob]

Already have, Seasha. This truly is the best place I ever found.

[Marco]

I should already be getting ready for bed, but a quick note.

If there was a MS "Hall of Fame" many of the members are right here at MS World. We have a number of people that have had MS for 4 & 5 decades and still have a high quality of life. These people have blessed my life more than words can express.

Thinkimjob, I see absolutely no way they will not be immensely blessed by your presence, your outlook on both MS and life in general. I understand you want to be a positive, but I believe honesty is far more important than painting an unrealistic picture.

If you are worried about your physical limitations then consider arriving early and be seated and have the hostess bring her to your table. You can also request a table near the bathroom or exit if either of those would be helpful. These suggestions may limit the amount of movement required and you can focus more on their needs.

Please let us know how things go ..

[Lisabelle]

I'm with Yukon

When I went into the infusion room for the first time for steroids it was early in my diagnosis. Seeing the veteran MSers scared me to death. When I got back to the parking lot, I just cried. It was something I wasn't prepared to see. ��

From the posts, it seems like everyone had a variety of different reactions. I am thinking it has to do with your level of acceptance or denial.

[Thinkimjob]

I have to think about this for a bit. She's a really nice woman, lovely children, three hours we talked. I felt terrible, hopefully she felt better. Meeting her highly worried husband tomorrow, so must have gone okay.

Invited her to my home, Marco, so that went well. Nothing unusual to trip over.

[Tapdancer]

Having been diagnosed in 1988, and doing really well, I have been asked many times to meet with newbies. I have learned much over the years about presenting a balanced view of my experience. I have had many, many symptoms (no trigeminal neuralgia) and, luckily for me, most have resolved. With this disease,"doing really well" is a relative term. I have accrued some residual deficits like a slightly neurogenic bladder and bowel, but have learned to manage this okay. With a regimen of premarin cream, D-Mannose, and trimethoprim with intercourse, I have managed to avoid UTI for nearly a year and a half. Unbelievable. Incontinence is no picnic, but I still work a half day and go to yoga three times per week.

The challenge I have with a newbie is to not paint too rosy a picture, if that makes sense. I lost a good friend who had been diagnosed several years after me. Her brother tells me that she was always hesitant to see me because she was afraid I would think she had progressed so fast because she could not maintain "positive thinking". Sure screwed that one up. So my point is that I have learned to take a more intelligent approach. Emphasize the MS is like snowflakes thing, etc. I have learned to listen more. That is what a newbie needs. A sounding board, a gentle support, and the assurance that I am just a phone call away.

[Tapdancer]

One more thing: Can anyone recommend a book for the newly diagnosed? I am meeting the daughter of my best friend from high school this week. I think a really good MS book might be a good thing to pass along. If I decide it is too soon, I could hang on to it for her. By the way, I discourage newbies from going to MS support groups. They scared the s**t out of me. I could be wrong though. Any ideas?

[chuchelo]

I think the best first book is MS for Dummies. It's pretty informative and the format makes the info less scary, I think. With regard to support groups, the National MS Society has newly-diagnosed support groups which are very helpful. Everyone is in the same boat (just found out) and the range of progression is not as dissimilar.

YMMV

[Jesse79]

I have had ms for thirty plus years and wished when I was first diagnosed could have had a chance to talk with a person who had it for a long time.


So yes I think I think it would be good.

[Tapdancer]

Thanks, cuchello, for the info about the NMSS group for newly diagnosed. sounds good. I have heard from several others now that MS for Dummies is good.

[Don2480]

It has been awhile but I was an anxious mess with a new baby when I was diagnosed. I did not know anything about MS and just coming out of my careless early 20's.I think it should be common practice to have a peer to answers questions.

Good luck on your lunch. Give her some sanity