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131daisymae

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1 reviews

Review for Multiple System Atrophy Coalition, Charlotte, NC, USA

Rating: 5 stars  

Five years before my diagnosis of MSA-C, I spent a great deal of time going from DOCTOR TO DOCTOR searching for answers. I got none, yet being in the medical field for many years I knew my body and I knew something was drastically wrong. Just loosing my balance without cause, my legs freezing upon standing and not being able to move them, very unsteady gait.
Finally I found a very caring dedicated Neurologist who spent a great deal of time with me on me very first visit. After two hours of doing many tests, asking many questions, looking at my MRI, he sits my husband and me down and tells me my DX. I believe you have MSA-C. I was a Neurosurgical nurse and have never heard of MSA. He explained in great detail what it was but all I really heard was that it had no cure and it was fatal. My trip home was very quiet. Neither my husband or I could even speak. We were in total shock.
Immediately I was on the computer trying to find out as much as I could about this disease. I found the MSA Coalition site and found it to be full of information regarding just about everything you needed to know about this dreadful disease. I immediately joined the Coalition and within a couple of days I received a call back from one of their volunteers. His wife sadly had the disease and his promise to her was he would carry on the fight to get more answers and do whatever he could to help find a cure. He was very knowledgeable about MSA, case studies being done and medications being used to help some if the symptoms. I was invited to join many of the Coalitions members only private discussions groups. My husband has joined the private care givers group.
This group has become my lifeline. Communication between each other is actually vital for motivation to keep the fight going, even though many times we may wonder why. Through my own experiences as a Neuro Nurse, I remember every single day telling my patients to never give up, we cannot judge or decide when that day will come when God calls use home. I have seen miracles that I cannot explain, I have seen people been given no hope for survival and remain in commas for many months. Yet though their mine was terrible injured, they could hear. They could hear the love and encouragement from their family, love ones and friends. Yes, they also heard me. I had been told that many times.
So because if this wonderful Coalition with dedicated volunteers I have been given the opportunity once again to say, do not give up, find something or someone to keep you motivated, listen to beautiful music, if you cannot read have someone read a book to you. Do not shut people out because of your disease as most of your love ones want to share their daily activities with you. They want to keep you knowledgable about their on going lives.
Whatever simulation you can get will remove the sad thoughts, the fear, the anxiety that this disease brings.
Thank you MSA Coalition, thank you for the opportunity to look forward every day to read someone’s story and for me to be able to respond to them and hopefully be able to help them on some way.

If I had to make changes to this organization, I would...

I would try to get National recognition via some medical show or new organization. The word MSA must get as much recognition as possible.

Role:  Donor