My Mother (dx 2007) has been suffering from generalized weakness for several months now. Her progression of the CBD thus far has been very slow and mostly contained to one affected limb and gait instability. However in the last few months she has been suffering from severe weakness. Even to walk across the room wears her out. She has been to her GP and had blood work which showed nothing.
My question is whether others have experienced this as a symptom of CBD?
Your description describes my mom’s situation. She was like that
exactly. Each day she got a tab bit weaker and stopped doing most things,
stating she was too weak. She went from walking about a mile, to walking
down the street, to walking in her house from room to room and then having
someone walk with her room to room. One day about 6 months later, she tried
to get up from a chair. I was prepared to walk next to her, but she fell in
my arms and then said, “J** my life is in a chair”. Over the next week,
she was able to walk in the morning but not by midday. By the end of the
week, she started using her wheelchair full time. It has been 6 months
since that experience. For the first 3 months she was in daily PT and they
got her walking with a walker or holding someone’s hand for short distances.
That success was short lived as now she can’t stand up straight or help with
a transfer from the wheelchair to her bed or the bathroom. Her body has
become rigid and her other hand, the one until now largely unaffected, is
affected. A month ago she could pick up finger food and put it in her mouth
with that hand. She can’t use either hand now to put food in her mouth.
She is unable to push a button to call for help.
I hope your mom is able to experience as much as possible in each day. I
think if my mom could go back to those days, compared to now.she would in a
Thanks for your reply. This disease is so confounding. For a while, she will do great, and other than the lifeless left arm, and her gait becoming more wobbly, the degeneration has been very slow. I get my hopes up that the worst is not going to come. And then she will just feel awful for weeks. And the frustration for her is not knowing whether to go to the Doctor, is there something else wrong, or is it the CBD? And I don’t know what to tell her. And she is also 84, so are some things just regular aging? (Sorry for venting.)
So, do I understand correctly your Mom’s progression you described has been over the last year? I remember not that long ago, you sent me the picture of her walking with the walker. This is all just so terribly sad.
Yes A** it has been a year. You just made me realize that. Last April I
spent the whole month in Arizona with my mom and her husband because she had
gotten so weak suddenly and he needed help with her. They had a wonderful
young student live with them for the summer who helped dress, bath and feed
my mom. I went again in September and that was when she stopped walking on
her own. We moved them to California in October.
Sadly we can’t get a photo of her standing again. Like your Mom, CBD
progressed slowly at first. My mom was very persistent with exercises for
her hands and legs. She rode a stationary bike every day for 30 minutes. I
use to kid her and ask her where she was riding to. Earlier this week she
was unable to make the pedals turn on a device that we got her in January.
It sits under her wheelchair and you can use your legs to make the pedals go
around. I strapped her feet in and pushed the pedals with my hands so that
her legs could get some movement. My mom just turned 76.
We are learning to move her arms and legs for her because she can’t. It is
more difficult than it looks to do it without causing her pain. I’d start a
routine doing that now if you can. It would be better to learn when you
won’t hurt her trying.
I am sorry your Mom is growing weaker and the condition is consuming more of
her body. I keep telling my mom that even if she can’t use her arms or
legs, she has the same spirit and soul that she always has. Your mom is
lucky to have you caring for her. Stay in touch.
Fatigue is common in CBD. Muscle atrophy starts to occur as well, as muscles don’t get the exercise they used to. Plus further degeneration is occurring in the brain so the signals aren’t getting through to the muscles.
Many people do become bed-bound or chair-bound because they are no longer able to support their own weight.
Have you considered using a wheelchair in her home?
I get blasted everytime I even bring up the words walker or wheelchair. She has an excuse why every single one of them wont work. I think sadly, she is nearing a point where she’ll have to reconsider. She’s convinced that if she quits trying to walk and move, she will quickly lose all ability. And she’s probably right.
I have read enough on this site to know what can be ahead for her. And I know I have only just begun the caregiving journey. It’s like a freight train is headed straight for us, and we cannot get out of the way.
Thanks for listening.