jenn
New member
- Joined
- Sep 5, 2007
- Messages
- 1
- Reason
- Loved one DX
- Country
- US
- State
- ri
- City
- cranston
Hello,
I am new to this forum and found the postings very insightful. My mother was diagnosed with PLS in 2003. They say it's supposed to progress slowly, but in my mom's case, she was completely disabled in less than a year. She has not muscle control, cannot speak, write, has no use of arms or legs and he neck and breathing have recently been deteriorating. The doctors say that although her speed resembles that of ALS, since she does not have the muscle twitches, they still classify her as PLS. I have recently moved out of my parents home and my father and a home health aide are the primary caregivers. My father has not taken a day for himself in the last 5 years and I know he's so worn out. Any thoughts on how to help him see a support group? He's a very quiet person and even though my sister and I try to help out, he just does not enjoy himself when he does have a chance to be by himself. Also, my mom is wondering what new research studies are being done in this area? Does anyone know of any walks or other types of fundraising that is being done in either NY or RI this year?
Thank you and I look forward to future discussions.
I am new to this forum and found the postings very insightful. My mother was diagnosed with PLS in 2003. They say it's supposed to progress slowly, but in my mom's case, she was completely disabled in less than a year. She has not muscle control, cannot speak, write, has no use of arms or legs and he neck and breathing have recently been deteriorating. The doctors say that although her speed resembles that of ALS, since she does not have the muscle twitches, they still classify her as PLS. I have recently moved out of my parents home and my father and a home health aide are the primary caregivers. My father has not taken a day for himself in the last 5 years and I know he's so worn out. Any thoughts on how to help him see a support group? He's a very quiet person and even though my sister and I try to help out, he just does not enjoy himself when he does have a chance to be by himself. Also, my mom is wondering what new research studies are being done in this area? Does anyone know of any walks or other types of fundraising that is being done in either NY or RI this year?
Thank you and I look forward to future discussions.