Christina Birdsong
Forum Replies Created
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Likewise, while I appreciate getting cards, those that are “Get well” cards are problematic. Perhaps my friend doesn’t know what ALS is. I choose to just appreciate that they thought me. I think it has helped that people can be referred to Caring Bridge, where what’s going on with me can be found, and I invite questions. The more people that know about ALS the better. Be a light. Perhaps you can answer truthfully and let the other person actually hear you, knowng that some will not.
I know it is hard. Stay strong.
Chris
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Thank you for all the responses. They have been helpfully informative to me. I was diagnosed in August of last year. Currently I have much muscle wasting in my right chest and have thus lost strength in my right arm. My knees have started buckling and I am falling. The level of fatigue is somewhat shocking to me as I feel strong, my mind feels strong yet when I do a task like washing dishes I find I can stand at the sink about 8 or 9 minutes and them but sit down. After a while I go back to the sink and repeat the same thing. Eventually I get the task done but it changes every day.
The hardest thing I do is try to get out of bed because it takes so many muscle. I’ve learned that a bed cane is a tremendous help and recommend them highly. The palliative care nurse ordered a hospital bed for me and became very troubled on the day of delivery. I suppose it is like sitting down in a wheelchair the first time. No one wants that. But . . . it has been helpful. Today, my ortho doc ordered a wheelchair for me . . . and again, as much as I don’t want to think I need it, it has been a great help. It’s natural to rebel against these changes but if we accept the reality of our illness, accepting these things makes everything easier.
Chris
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Yes, it is extraordinarily different from person to person. My first symptom was my eyesight going in and out. Periodically everything I looked at became white and then resolved back into the way it out to appear. Then I found that I could not lift my head up when I was laying down. I began to have remarkable muscle wasting between my left and right shoulder and anything I did exhausted me. Yet, because I’m in disbelief (I don’t mean that I am sticking my head in the sand) I have often felt that I did not have ALS because I felt so strong in many ways. It must be this way for many people. I am only seven months since diagnosis and now, every day, I recognize a little more loss of function. I am greatly heartened that I have found numerous, helpful resources to find help, advice, support and more. I especially thank Dagmar for the tremendous work she does on this site. Just having this many people to share the process with is like compassion. I am not alone. I am only encouraged to face it and live the best life possible. Thanks to each of you.
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Hello,
I have experience muscle wasting, particularly in my right leg and arm. Even the right side of my chest has muscle wasting. When I went to Johns Hopkins, where I was diagnoses, they referred me for 6 months of physical therapy. It has worked wonders. They acutally got me off the walker and onto a cane (for now). I’m now able to walk farther because I am stronger. The PT person is working on building up finer muscle fibers, our support muscles when the larger muscles are too affected. I wish you the very best. Consider physical therapy.
Chris
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Hello. My doctor thinks I may have “Slow ALS” which means I could live far longer. I find very little literature on the web about slow ALS. Does anyone have information to share with me? I would so appreciate it.
Thank you,
Christina