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sunfish

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Aug 19, 2014
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Loved one DX
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SG
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Singapore
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singapore
Hello everyone

My sister (aged 24) was told she very likely has Progressive Bulbar Palsy in late June by her doctor in Toronto. I have joined this group looking for advice & friendly support & solidarity.

Our family currently live in Singapore, and she has been living in Canada planning to become a citizen & studying to be a social worker for the past 7 years but has moved back last month to get better care & be around family. We are holding out hope that there is a slim chance it may not be ALS but whatever it is, it is progressing fast.

She came back to Singapore with a mild speech impediment in December having lost a lot of weight. Doctors in Singapore and Canada have done many tests but have ruled out most other things. She currently takes prednisone, sees a speech therapist and a neurologist and we contacting a scientist in South Korea who does research in developing Riluzole.

She has lost a lot of weight and has difficulty eating and swallowing liquids and it is getting harder to understand her. Her upper body is getting weaker but she can still do most things normally except carrying heavy items. She has a very positive attitude though and takes everything one day at a time and is getting her driver's licence, volunteers and is the primary caretaker of our new dog.

Our main concern now is maintaining her weight (she is still losing weight and takes a long time to eat). Looking forward to meeting & speaking to more people on here, especially young people. The population of Singapore is very small & because ALS is so rare its hard to connect with other people with this condition. It is a strange time for our family but we are taking everything day by day.
 
Welcome. For the feeding and weight loss, I highly recommend her getting a feeding tube. There are formulas she can get that will provide all her daily food requirements as well as allow her meds to be crushed and given. This will help her maintain her weight and possibly gain back some of it.
 
>Our main concern now is maintaining her weight (she is still losing weight and takes a long time to eat).

if she can drink smoothies, I get over 2,000 cals/day w/ 2x fruit + 2xchocolate/banana/peanut butter smoothies -- haven't been able to eat since feb, but haven't lost weight yet ...
 
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