Spinal Cerebellar Ataxia SCA6 General thoughts on fatigue and weight loss

Posted on August 22, 2012. Filed under: Balance-Based Torso-Weighting, Cerebellar ataxia, Research | Tags: , , , |

Well it has been a week or two and I have new updates on our friends with SCA 6.  Rolynn left California feeling the best she had felt in years. Recently she moved and lost weight intentionally. The move left her completely exhausted. After the move she felt very unsteady again. When I saw her last she had improved….I had removed one pound from her vest leaving her with only 3/4 pounds. She replaced the weights into her vest where I had marked and this helped her ability again. She is flying to Austin to see me when I am down there and I will check her weights and placement.

Several things to think about. 1. When a patient becomes over fatigued they usually have decreased performance. ( I see this in our research all the time ) Please think about this ahead of time. When you feel tired pace your self. It may take several days to feel better again when you  over do it. 2. The intentional loss of 10 pounds could change the balance of how I placed the weights depending on where she loss the weight.  3. When people change for the better or worse we may need to change the weight placement or amount.

Arlene – Rolynn’s mom has been going to therapy and continues to do well! Last week she walked backwards in her BalanceWear vest without any support!!! This is very difficult. She hasn’t been able to do this in years. BalanceWear+therapy+determination =performance!

Who says you can’t improve with SCA6.

Hang in there. Work hard. Achieve:)

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4 Responses to “Spinal Cerebellar Ataxia SCA6 General thoughts on fatigue and weight loss”

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Hi Cindy,
Just wanted to let you know that Mom(Arlene) and I did great at my son’s wedding! Not only was I able to dance with my son for the mother/groom dance, but I danced the entire night! I probably didn’t look quite as graceful as “back in the day” but I was confident enough of my balance to stay on the dance floor. I know you remember this was one of my major goals when we started this journey.

Not only did I dance, but my Mom got in on the action too. She was able to be escorted down the aisle on my stepfather’s arm, and even danced with him! It was so emotional that the whole place burst out in joyful tears. My son and I had to try to get ourselves together before we went out on the floor so noone would think we were crying about our dance!

It was a wonderful experience that was made possible because of your balance wear and the hard work you have guided us to do. We continue very day to be amazed at how much we have all improved. Just this weekend I watched Mom walk across the room to reach her walker without any assistance. I was sure for a moment that she was going to start jumping up and down for joy! Who knows, may she will be able to do just that if she keeps up the hard work!

Rolynn

Thanks for the update Rolynn. I am so happy to hear your family is doing very well with BalanceWear. In addition I am happy to hear that the combination of the BalanceWear Vest and physical therapy is working for your mother!

Keep up the good work:)

Warmly,
Cindy

What’s up to all, it’s really a pleasant for me to
visit this web site, it consists of precious Information.

Thanks so much. Keep coming back!!
Cindy


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