Lore
MM.com Benefactor
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My brother Kevin (Cubbie) has Moyamoya
Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: 
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Hi Peter,
Welcome to our MM family.
You have come to the right place to learn about MM the disease, and to have support from the MM family as you and your wife travel this journey. This is a terrific group of people who will offer support by answering questions and sharing their story.
Good for you for reading and educating yourself about the disease. Being armed with knowledge about the disease will help.
My brother was successfully treated with two direct bypasses (STA-MCA) by Dr. Steinberg in May of 2005. We live in Ohio and Stanford seemed so far away.
As for support, everyone is different in how they handle news of one having MM, being as you mentioned, a rare disease. Some believe they are helpless and others want to know about the disease and how they can help. Sometimes, just knowing people want to help and support you is comforting.
I have many friends and family supporting me in a number of different ways. Some encouraged me to not give up the fight to get my brother treated by a MM specialist. Others helped me by just listening when I was exhausted and thought I didn't have the energy to carry on. Some helped me search for a MM specialist. Others took care of my husband by supplying meals and housework while I was consumed with getting my brother treated more than 2,000 miles from home and working a full-time job.
My husband supported me by encouraging me to carry on and by saying do what is right and get your brother the help he needs and deserves no matter what the price, meaning monetary and not to worry about anything else.
All offered prayers and were very interested in learning more about the disease and listened to me explain that MM is a rare disease and is the progressive narrowing and closing of the carotid arteries. Once they realized what it was, they understood the TIAs, strokes and the dissected right upper internal carotid artery that occurred with my brother.
I explained the treatment is a bypass of the carotid arteries. When I explained my brother was going to be treated by Dr. Steinberg, they were relieved since my brother had gone four years misdiagnosed and was in pretty bad shape.
I believe the not knowing anything about the disease was enough to scare most everyone initially. For me, it was as though I was living in a fog bank and everything seemed chaotic. I really didn't know what to do or how or when. I felt I couldn't concentrate and I was in a whirlwind In the middle of all this, my mother passed away and an older brother passed away. I was overwhelmed to say the least.
At the time, there wasn't much information available about the disease. That's when I found this site and found Dr. Steinberg.
My family and friends got me focused and put a step-by-step plan of action into play. Just knowing my family and friends were there for me was enough for me to realize I was not alone. I knew they would do anything to support me whether that was to be there as a sounding board, a shoulder to cry on, or for assistance in some way.
When my brother required daily rehab and trips to and from the doctor, family and friends took turns driving him to his appointments. Others volunteered to stay at the house with my brother on the days he wasn't at therapy. Some cooked meals. Some took care of our two dogs.
Most people want to help but don't always know how. Any help can be a godsend to relieve you of some of the day-to-day activities and it allows you to focus on the task at hand. Sometimes, just having someone to talk to is enough.
I relied heavily on the MM family on this board. They are great and I couldn't have done it without them. They continue to be an inspiration and source of support and friendship to me and my brother.
I hope this helps.
Again, welcome and please ask any questions and keep us posted on your wife.
Lore
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Question for people who have gone through Stanford (Read 7627 times)
