My brother has been recently diagnosed with MS. He is a 29 years old and lives with his girlfriend. I am a married working mother of two children and live about an hour and a half away from him. I feel deeply impacted by his diagnosis and want to support him in the best way possible. I really want to stay positive and educate myself about the disease. However, I do feel like I need some counseling or guidance on how best to show support to my brother during this time. He is very independent and being very positive and I do not want to come off negative or thinking the worst case scenario. Do siblings of people with MS ever join support groups? Do things like that even exist? Curious if anyone has any knowledge.
I think you should go to an MS support group meeting. The MS society runs these meeting all over the country. I think it is important for you to get educated about this disease.
Your brother is going to start on a long journey, of which the outcome is uncertain. However, I can tell you it is not a death sentence and he can have a long and productive life. I think you will find that the more you know, the more you can help.
Hi! Reaching out to a support group is a great idea. Many groups are open to family and friends in addition to individuals living with MS. You can use this link to find the groups closest to you:
The Family Matters group here on MS Connection could be helpful too - https://www.msconnection.org/groups/familymatters
MS affects people differently, so the types of support people need from their families probably depends on the person. I think educating yourself about MS and talking with others going through something similar is a wonderful start. We have a lot of accurate, research-based MS information on our website - www.nationalmssociety.org - and feel free to call an MS Navigator with questions: 1-800-344-4867.
Definitely educate yourself about MS. The more you know, the better for him and you. Help him to maintain that postive attidude he has. Listen to him when he wants to talk about it. Don't shy away.
Most of my large family sucks at support because they have chosen not to read up on MS. When they see me, they see someone dying. HECK!!! One sister has already put debs on my sideboard!
Luckily I have a sister and a friend for support. They both understand because they have thorougly read up on MS and the various therapies. They don't pity me because I have MS.
Pity is such a killer.
You're being a huge support to your brother just by caring. He's still who he was before he was diagnosed. Ask how he's doing and truly listen. Don't treat him different.
I'm fiercely independent. My family knows I need to be the strong one so I think that keeps them from asking how I'm doing. I believe, although they've never said, that they feel like if they don't talk about it or I don't bring it up then I'm somehow okay. Oh if wishing we're true!
Anyway, my best friend is super supportive and her family always asks how I'm doing in a way that I know is genuine and caring. Not the how you doin' of strangers or just acquaintances. Although one thing she does that drives me a bit batty because she has educated herself is give me the 'this works/ed for so and so so it' ll work for you' speech. If you see or hear about something you think will work for your brother, ask if he would try it. Don't try to force it on him.
Truly all you can do is be a great sister: call/text, make sure he plays with any nieces or nephews if he has them, encourage a healthy diet with exercise, and give lots of love.
I have been on a 35 year journey with my mom who has lived with MS.
I wanted to become an expert on MS so I could understand the whats and hows. You may want to reach out to local support groups and do a lot of listening. Listen to your brother and those who have family members with MS. Undertand MS, and understanding how you think and how you perceive MS will have an impact on your brother. Do not get lost in worst case scenerios. Life is still a journey, and his journey is with MS. Get involved in events in your area with your local MS chapter, get to know others who have MS and their familes.
That was the age when I was diagnosed. I found the biggest help were my closest friends who paid attention to when I got tired (I didn't have to tell them), quietly made sure there was enough light in the rooms I was in, and kept including me in activities by asking and not assuming. It will take him some time to figure out what he needs. Just being there and focusing on him but not treating him differently helps. The worse thing I found were friends who burst into tears, who worried endlessly (it is my disease) and made decisions for me.
Your brother is the same person, your relationship is the same. Use the strengths of your relationship, do you talk about personal things, are you the person who cooks etc to keep buiilding the relationship. For me it took years to figure out my baseline and some things (such as heat tolerance) have gotten much worse as I have aged.