Old 08-01-2013, 04:24 PM #1 (permalink)
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Default Diagnosed last week

Hello,

My 79 year old mother was diagnosed with ALS last week. Her problems began last fall when she found she could no longer turn the key to start her car. The symptoms were just in the right hand. She is not one to go to doctors, and it was last December before I could get her to go to her family doc. He diagnosed Inflammatory Arthritis and sent her to a rheumatologist who had been treating her since January for IA. Progressively her right arm was affected and it is useless now. Along about Feb or March she noticed her left hand was not as good as before, had trouble picking things up. However up until late April she really was only bothered by the right hand, although the left hand was worrisome to us but she has osteoarthritis so to think she now had IA wasn't far fetched. Beginning in May she started to have difficulty walking. Since about the second week of June she has really went downhill. The left hand is a lot worse, walking is extremely difficult. She cannot get up from a chair without assistance, nor get out of bed without assistance. She is totally dependent upon my father and I for all her activities of daily living-dressing, showering, brushing teeth, etc.

Finally saw a neurologist last week who did the muscle stimulation testing and diagnosed, based on the upper & lower motor neuron involvement and hyper-reflexes, ALS. We're going to an ALS clinic at University of Kentucky next month, earliest we could get in.

I am quite worried about the rapid progression of her symptoms. She has no trouble breathing, does get strangled on liquids sometimes but she has done that for years & year, although now I worry about that being related to ALS also.

How she went from nothing, to a single hand involvement, to where she is now baffles me. We're talking about 10 months. From showing no symptoms that we picked up on to where we are now.

We've had a tough year. Lost a beloved dog in January that was the center of our lives. Then in late April, we had another heartbreaking experience with a dog. After that experience she has really went downhill. Wondering if the stress from that kicked the ALS into high gear.

Glad I found this forum and have lots of reading to do. Any comments and encouragement is appreciated. We really dont' know which way to turn right now.

Kim
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Old 08-01-2013, 04:45 PM #2 (permalink)
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Default Re: Diagnosed last week

Hi Kim,
I guess the good thing is that she has a firm diagnosis and the awful thing is that it is ALS. You've got a good start by scheduling an appointment with the ALS Clinic. Contact your local ALS Society right away too. They will provide you with knowledge and equipment as you will need it. Read up as much as possible and always stay at least 2 steps ahead of progression. Things can progress rapidly - ALS is relentless, so it's good to be prepared, physically at least. The members on this forum, past and present, provided us with so much knowledge based on experience and research as well as unending, much needed support. So sorry for all of you. Yasmin.
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Old 08-02-2013, 12:07 AM #3 (permalink)
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Default Re: Diagnosed last week

Hi Kim, So sorry about your mom's diagnosis. My mom is 86 and was diagnosed with bulbar onset last December , her symptoms started a few years prior. I wish you and your family strength in dealing with this monstrous disease.
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