Anyone with family members who have MS?

[chickadee]

One of the things i want to do this year is get in good enough shape to ride in a Multiple Sclerosis bike a thon. Does any one else have plans to do something similar, to support a family member with MS? My 31 year old daughter has progressive relapsing MS since she was 25. I get so frustrated that there is so little that i can do to help her. i would really like to talk with others who have MS in their families.

[Kate]

I don't have any family members with MS, but I think it's great that you are going to do a bike-a-thon! I have a friend whose FIL died of ALS and she is very proactive within the association by doing their walks and raising funds to support research. I've done things with the American Heart Association and it really makes you feel good helping out a cause like that.
Hopefully there is someone on here who has someone in their family with MS. :)

[Mori]

I do have a relative with MS & it's very heartbreaking to see her so helpless & confined to a wheelchair compared to the beautiful & vibrant woman she used to be. It truly breaks my heart. :(

[maryfsj]

My husband has MS...he was diagnosed in July 1999...it's been a long hard road since then. We have to travel in order to do any of the walks/runs for MS but we are going to try and make one this year...as long as my hubby stays healthy. I totally understand your frustration...as I live with it everyday!!

[IamCricket]

I have 3 people in my family with MS. We are currently undergoing a research project to see if it is hereditary.
My uncle was diagnosed in 1961, he lived until 2002 and actually went to school from his bed & got his master's degree. His son, my cousin, now 41, was diagnosed in 2003. He has had 3 relapses but is doing rather well. And then there is my mother, she has had MS since 1999, and has not had a relapse since being diagnosed.
I do both the run and the bike ride for MS.

[tanner413]

One of my best friends just just dx with MS last week. Could you ladies give me some suggestions on how to help her. I feel so helpless and want to be there for her. I just have no understanding on the disease.
Thanks

[chickadee]

Hi Tanner, Sorry to hear about your friend. MS is such a frustrating disease, they don't know for sure what causes it, there is no cure right now and the treatments sometimes help, some times don't and sometimes the side effects can be worse than the MS, BUT as my daughter says, if I have to have a serious illness this one isn't so bad. It could be cancer.
over all my daughter has a pretty good attitude about it, but there are days, she can hardly get out of bed. She has a little girl that will be 2 in May and taking care of her somedays can be overwhelming. The extreme fatigue, I think may be the worst part for her and hardest for those around her to understand. When she is tired it is so way past what a normal person would call tired it is not even close. Crushing fatigue is a good description.

Although you can find a lot of info on the web, Most of the information I have gotten comes from the National Multiple Sclerosis Society. Just go online and do a search for National Multiple Sclerosis Society and their website should have how to get ahold of your local MS society. Good Luck!

[sandies]

My grandmother had MS. My earliest memories of her were her and her walker. In about junior high she went to the wheelchair. I shared my bedroom with her and her hospital bed when I was in high school. She lived a long, full life despite her MS. She was well loved and we miss her.

[Discouraged23]

Hi chickadee,
I don't have family with MS but I have MS myself and I also have the progressive relapsing MS I have been just diagnosed with it in the last year but have been ill since 1998 and also have grand mal epilepsy and I am 23 now, and its not very nice at all, so days I don't even want to go on cause the pain is terrible at times, how is your daughter mobility wise? is she able to walk? or is she in a wheel chair, well I hope to hear from you soon take care...

[chickadee]

Hi Discouraged, So good to hear from you, I am glad that you have found this website and have replied to this MS thread. When my daughter was first diagnosed, she went on the web to some of the MS chat rooms and found that some of them were pretty depressing. She stopped looking at most of them simply because the people who are doing well or have a good attitude are not the majority of people posting. I think here it might be a little different because every thing is geared to be positive and making progress. :)
anyway, I know since you are newly diagnosed, you are seeking as much information as you can get. In answer to your question, my daughter didn't have serious mobility problems until about the last couple of years. On good days she can walk although it is very wobbley. When we go shopping she uses the motorized chairs the stores provide, she has a cane and on bad days she has her own motorized scooter, for around the house or if she wants to go for walks around the neighborhood. I believe her MS is very much related to physical and emotional stress. She has been struggling ever since the baby was born. The demands of a new mom are overwhelming even for a physically fit mom much less one with MS.
You mention that in addition to MS you have siezures. Did you have siezures before or after the MS diagnosis? If I could offer a suggestion, have looked in to any MS support groups that meet in your area? It worries me that you are feeling so down and talking with others might help support you during the really tough days. I know one of the things my daughter really struggles with is that, to look at her you can't tell that there is anything wrong with her. She looks "normal". because of this others have a hard time understanding that she can't do normal things, like going out with friends if there will be alot of walking or standing, an airplane trip requires handicap assistance (no she's not faking and trying to get on the plane ahead of everybody else!) and when she says she is tired she is really really really tired. her MS has been an eye opener for me, never again will I pre judge somebody that looks Ok who parks in a handicapped parking spot.

Right now my daughter is trying some alternative treatments, such as diet, chiropractic, and a type of massage called "raindrop massage" with essentieal oils. Too early to tell if any of it is helping. I go out to visit agian the end of April and will be anxious to see if she is doing better.

Sorry this has been such a long post, but I really want you to know that there are people who can help support you, keep surrounding your self with postive people and experiences and post back here again soon.

Any others out there with words of wisdom to share with Discouraged? I would love to hear how others are coping and if you know of encouraging websites for MS people and their families.

[nowakd1133]

Hey Chickadee,
I have an Aunt and a cousin who have MS. I try to always participate in the annual MS walkathon in our town.
Does your daughter lose her eyesight? I had and still have numbness on the left side of my body that the docs cant seem to explain and at one point they tested me for MS. Results came back inconclusive.
Deb

[mommanuci]

Hey Chickadee! How's that cycling going??? (I go by jiller on hystersysters)
My mom was diagnosed with MS in her mid 20's. It started with her eyesight. She now has difficulty doing much of anything. She can do basic ADL's, but needs assistance transferring from seat to wheelchair to bed to toilet, etc.
She has never had any luck with medications for this so doesn't take anything to try to make it any better. She does do some physical therapy at home a few times a week.
Years ago I walked one of the MS Walks, but I too would love to be able to participate in one of the MS 150's!!!
Good luck to you and let me know how it goes!!!
Jill

[chickadee]

Hi Deb, Yes my daughters first symptom of MS was that she temporarily lost vision in both her eyes. She regained most of her sight, in a week after being hospitalized, but not 100%. over the years it has gotten a little worse and driving at night is now a problem for her and reading for prolonged periods of time. Her first few attempts by the medical profession to diagnose were inconclusive too. It seems there is no real good test for MS, it becomes a matter of ruling out all other possibilities and waiting for a pattern of relapses to occur. I wish you well. Keep checking back

[chickadee]

Hi Jill, Funny you should ask, even for all my good intentions, the weather this last week in my part of Minnesota has been well below zero, and getting outside to do any walking has been out of the question. I did pick up an exercise bike at a church rummage sale a couple of weeks ago and find that my skinny old butt, doesn't have enough "cushion" on it to prevent pressure point sores. Hmmmmm!? I really do like the idea of biking but I might have to settle for the MS walk that they do here in town.

How about you Jill, are you planning on doing either the walk or the biking this year? i should get on the MS website and see exactly when the Minnesota events are scheduled. I will try and post the links for others to check their states.Ckeck back with you all later.-

[chickadee]

OK, for everyone interested in maybe participating in an MS walk or bike athon, here is the National MS website link, once there you can check out the events in your area. also lots good info on MS to be found there. click on http://www.nationalmssociety.org/

[nowakd1133]

Thanks Chickadee.
My lil bro used to live in Eagen Minnesota.
I'll pray for your daughter and your family.
Hugs, Deb