Hi! I'm new here and I am just trying to get information, understand more and be of support to my best friend who has been struggling with MS. She was once very active running at the beach and going to the gym early every morning. Now she is having a hard time dealing with everything and I think she needs a support group. Her legs are giving out on her and loss of feeling in her hands makes it difficult to cook or bake which she enjoys doing
She had a team for the MS walk and fundraiser for 5 years but can no longer walk long distances
Does it ever get better or progressively worse? It is even harder now with Covid-19 and being isolated at home.
Thanks and prayers to all of those struggling with this horrible disease.
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Kace
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Hi, I can only echo what rjoneslaw has said I hope your friend can come to terms with her diagnosis. I don’t think you ever come to terms with it but it helps a lot if you can. We are here for you and your friend, Blessings Jimeka 🤗
Yes it gradually gets worse, no cure😒 Everyone progression is different and some are mild and others devastating. You have to take control and stay positive and Not let MS control you. I really haven’t noticed a big difference with covid other than being really careful. Yes not as much to do but that’s effected everyone. Have her join the group of great people who deal with MS 👍🙏😉 Ken 🐾 🐾
Sory to your friend, but it only gets worse it will not get better know matter much money she spends or what she takes. Make sure she is on a disease Modifying therapy and right one should slow her decay,m good luck to her
Welcome to the group. You're a great friend to look into MS more, to understand it better and find ideas and support. I hope your friend will join in when feeling up to opening up about it.
I would disagree that that it is inevitable that anyone's MS will definitely get worse. There are so many factors involved, and each one of us is so different. Getting on a DMT (disease modifying treatment) can definitely be very effective in maintaining function. Diet and exercise can play a big role in how we function. It's true we don't have a complete cure yet, but the treatments are far more effective than they ever were and we have so many more choices than we did even 20 years ago.
My own case started with a "Clinically Isolated Syndrome" attack about 25 years ago, with a relapse about 4 years ago, but today I am still walking and doing most everything I want or need to do. I'm nearly 61, so MS has absolutely not turned out to be what I expected it would be. When I had my relapse, I thought that was what life would always be, but I have nowhere near the symptoms I had then. Symptoms can come or go or wax and wane. I can sure understand what your friend may be feeling right now. But I have learned that most of us learn to adapt to and even overcome some of our limitations. Getting referrals to and taking advantage of resources like physical and occupational therapies is really important. No, we don't get guarantees, but we don't get those in any area of life.
You can be a great support to your friend by educating yourself about MS. There are some good online resources, but there are also some very inaccurate ones, too. An excellent class all about MS starts soon, and I urge you to take it, even if your friend would rather not right now:
Allowing your friend to vent without judgement will be so helpful, and offering to help with whatever she would find most helpful will do much for her spirits. You may need to ask her directly what would help her most. I felt very alone when I got my diagnosis, but finding so many wonderful people here who share their stories with me was a godsend.
Let you friend know that she is in my prayers as she wades through the process of acceptance and adaptation. And thank you for being the kind of friend you are. You are so appreciated!
Thanks so much! You have give me a lot of information and I hope I can encourage her to join the group. We had talked about needing a support group before and she said that would help.
I don’t have a lot of words of wisdom as I was recently diagnosed and am educating myself right now.
What I can say is that everyone here is great. Many sites that I have visited were very gloom and doom. That is not the vibe of this group at all! Lots of uplifting support; lots of little lighthearted jokes and, at times, some big doses of reality.
My family doesn’t get it at all. I don’t blame them, but I am struggling with it all and have found a lot of peace here.
Welcome to the group and I hope your friend eventually joins as well.
I agree she should see physical therapy and occupational therapy. I just got an AFO brace that keeps my foot up and prevents my toes from catching and tripping me up. I was struggling to walk long distances but was able to hike on a flat trail for 2 miles over the weekend and only had to stop to rest a few times.
I also have pretty decreased sensation in my hands so can relate. Occupational therapy can help her modify how she cooks/bakes and/or suggest tools to help.
Good luck. I am sure just being there and understanding she can't do everything she used to do with support and not disappoint is a huge help.
MS is an insidious autoimmune disease with no cure it effects each individual differently and the progression is different for everyone that is effected. The disease attacks the coating of the body’s nerve endings and leaves a scar (sclerosis) which stops the body from its normal nerve functions. That is a very scary diagnosis but there is hope.
The only remedy for guys like me years ago was to load me up with steroids and hope for the best, now there are a host of disease modifying treatments available still no cure but a real measurable delaying of the progression, do not go gently into night, fight against your fate and fight against this injustice to your life, we certainly did not ask for Multiple Sclerosis but we do have to live with it.
Favorite Quote:
“In the midst of winter, I finally learned that there was in me an invincible summer.” Albert Camus
Welcome! I’m sorry that your friend is having a hard time. Some of us will get progressively worse, while others will be fine on their meds. I’m finding covid to be more awesome than sucky.
I love that you have joined us to try to help her! So she can’t run at the beach, but she can go listen to the waves if someone helps her get there safely. She likes to bake but her hands and legs are shot? So be her hands and legs. Might actually be comical if you have never baked. Bring some wine. I don’t know how close you guys are or how much time or patience you have, but there are ways to help her to not let MS take everything.
There are also lessons some of us have to learn about mourning the things we use to think made us who we are, to not become bitter, miserable and resentful. For that, I have no advice for you, except to look at the phases of grief and understand that it never stops for the ones that experience progression.
Many people here have had friends even spouses) abandon them when diagnosed. Kudos to you for sticking around! I thought life was over when I was diagnosed but once I got on the right medication for me, I've done pretty well! If your friend has to try different meds, it may bring on depression. But not all meds work for everyone. It took me three different ones before I found which one was for me. Best of luck to you and your friend.
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