Pauline Kaza
Forum Replies Created
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Is stem cell available in the U.S?
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Thank you for your detailed information on what equipment you are using
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I’m not ready yet to be defined by any words other than my name.. Many people have heavy crosses to bear. Why do we need adjectives to describe ourselves? But, I do agree that if you have lost a loved one and you are able to cope, you are a true survivor.
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I’m not ready yet to be defined by any words other than my name.. Many people have heavy crosses to bear. Why do we need adjectives to describe ourselves?
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A Survivor
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I also have RA. and Fibromyalgia. It is difficult to discern which disease is causing the pain. Troubling to me some days. Stretching and heat help
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shown interest in a palatel lift prothesis made by maxiofacial dentist.can we start conversation on surgery for our palates that control our food and drink. I have spoken to the top plastic surgeon Dr. Papay at Cleveland Clinic and the Durham University ALS dept. These Drs do cleft palate surgery on children and babies. Because they have never operated on an adult they would not do a palatel lift for me. It would help us so much. As a group maybe we could make our wishes known. Pauline
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Find a SLP who is familiar with our disease. It may take a few tries, but is worth it. Eventually you’ll be able to do the exercises on your own. Or just go for it on your own. On your own, you may find out how independent you can be. Pauline
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<p style=”text-align: left;”>My dysarthria began early on about four years before diagnosis. At that time I didn’t know what was going on. So I began searching on google for causes of compromised speech. A lot of SLP’S came up. So I chose a couple and followed on utube with them every day. One was Donna Durbin an accent coach .
The other one just happened to have a video of dysarthria. I am still talking. most days really good. With this disease you have to be persistent in your search for making life better. Know your disease and your body. You have to be your own advocate. Search and search for things that you think might help you. Don’t be at anyone’s mercy. We still have a brain, be creative and use it. Pauline kaza</p> -
Sorry you have had such a scary and unusual experience. Maybe your mouth,,jaw and tongue muscles have become week. Have you had a speech therapist? My therapist helps me with swallowing, throat, Vocal and tongue exercises. I have maintained for 5 yrs. I wish you well.I believe nothing tried nothing gained
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Yes I also have the same issues. I also have Sojourns syndrome which causes dry mouth and cavities. I use Biotene products for dry mouth. It seems to help the cheek biting, creates some comfort. Blessings, Pauline kaza