@pauline-kazaaol-com
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Pauline Kaza replied to the topic Study Suggests a New Spinal Delivery Method Renders Stem Cell Therapy Safer, More Effective for ALS in the forum Flash Briefings 3 weeks, 6 days ago
Is stem cell available in the U.S?
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Pauline Kaza replied to the topic What kind of power lift chairs are recommended by ALS people like me in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 month ago
Thank you for your detailed information on what equipment you are using
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Pauline Kaza started the topic What kind of power lift chairs are recommended by ALS people like me in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 month, 1 week ago
Who uses a power lift chairs. Comfort, convenience, positions?
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Pauline Kaza replied to the topic Do you consider yourself a “hero” for living with ALS? How about a “survivor?” in the forum Living With ALS 1 month, 2 weeks ago
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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Pauline Kaza replied to the topic Do you consider yourself a “hero” for living with ALS? How about a “survivor?” in the forum Living With ALS 1 month, 2 weeks ago
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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Pauline Kaza replied to the topic Do you consider yourself a “hero” for living with ALS? How about a “survivor?” in the forum Living With ALS 1 month, 2 weeks ago
A Survivor
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Pauline Kaza posted an update 5 months, 2 weeks ago
In reference to the question, “what has been the biggest adjustment for me living with ALS? “. It seems we all are very similar , perhaps in a different sequence, with our challenges. Because I’m a widow, I have not had a caregiver. I am now in assisted living. What a challenge at first. I do my gratitude journal each night. It really does…[Read more]
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Pauline Kaza replied to the topic ALS and Pain in the forum Living With ALS 7 months ago
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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Pauline Kaza replied to the topic Teeth and Bulbar ALS in the forum Living With ALS 7 months ago
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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Pauline Kaza replied to the topic Teeth and Bulbar ALS in the forum Living With ALS 7 months ago
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
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Pauline Kaza replied to the topic Forum Manners in the forum Using our Forums 7 months, 1 week ago
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…[Read more]
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Pauline Kaza replied to the topic How to Keep on Talking: Helpful Tips and Links for ALS-related Dysarthria in the forum Living With ALS 7 months, 1 week ago
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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Pauline Kaza posted a new activity comment 7 months, 1 week ago
Dagmar, Thank you for your warm welcome? pauline
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Pauline Kaza replied to the topic How to Keep on Talking: Helpful Tips and Links for ALS-related Dysarthria in the forum Living With ALS 7 months, 1 week ago
<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 .
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Pauline Kaza became a registered member 7 months, 1 week ago
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Hello Pauline,
Welcome to the forum! I am one of the forum moderators and a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by typing a…[Read more]
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Dagmar, Thank you for your warm welcome? pauline
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Hello Pauline,
Welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. ALS is a dreadful disease and we all want to understand it better, and find a cure!!We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive h…[Read more]
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