CaringinVA Asked February 2023
Has anyone else’s LO received a diagnosis of Paraparesis? This is a new one for us.
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“Paraparesis occurs when you're partially unable to move your legs. The condition can also refer to weakness in your hips and legs. Paraparesis is different from paraplegia, which refers to a complete inability to move your legs.” I put this term in the search box here, and nothing came up. Just wanted to see if anyone else has dealt with this diagnosis for the one they are caring for.
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Just a thought and not assuming this applies to your loved one;
my husband has significant fear of falling. He too, would not move his legs. We eventually determined this was more of his reluctance. Due to lack of activity, weakness exacerbated his mobility difficulties. In his case, it’s anxiety and sedentary lifestyle. Thank God he’s making limited improvements with PT and Cymbalta. Although there’s a long way to go, It really helped him both physically and emotionally.
Matilda
https://www.healthline.com/health/paraparesis
https://www.medicalnewstoday.com/articles/318751#causes
https://www.nejm.org/doi/full/10.1056/nejm199009133231107
Not that I am any expert, but it appears to be from one of two origins:
1) a very rare genetic disorder inherited and which may present in certain families who have the genetic mutation which causes this condition
OR
2) from a viral infection more commonly found in tropical areas of the world
Knowing which is the cause -- genetic or past viral infection (could have been when traveling to a tropical area) -- will likely determine which treatment path may be warranted.
If viral in nature, perhaps getting with a board certified infectious disease physician would be a good idea. https://www.idsociety.org/
If genetic, perhaps contacting NORD -- National Organization for Rare Disorders -- might be helpful. NORD perhaps can point you to an expert in this rare genetic disorder. https://rarediseases.org/
Hoping for the best, sorry you are having to deal with this.
of the decline … messages from brain aren’t able reach legs.
Some things are mysterious and we may never know the reason why some people stop walking.
My friend was the caregiver for her younger sister with Down’s syndrome. When her sister developed dementia she no longer walked. She went into a wheelchair. She became bedridden for a long period of time before she died in her 50’s.
It surprised everyone that she stopped walking. In her younger days she was involved in many activities. She swam competitively and was very active but suddenly refused to walk.
Initially we thought it was muscular weakness due to inactivity, so she was doing PT for a while. But when she wasn't improving, the doc told us this.
Yet, she can still help with transferring, and all of a sudden she will swing or move her legs to a more comfortable position.
My Mom fell about 2.5 years ago. She was backing up while bowling, and tripped on her purse straps (left purse on the floor) She was not hospitalized or anything, but slowly she began to have numbness in the left leg.
She has gone to chiropractors, gotten massages, had x-rays and MRIs, and we have no answers. It's not pinched nerves, we are at a loss.
She used to be able to get around with a walker, and could barely clear the floor with the left foot to move it forward.
Now she can't walk at all. She's a two person assist to a wheelchair, chair, etc. She needs help to stand up, and sometimes she can bear weight, and sometimes not. She has edema in both feet, they are red/purple, and cold. Circulation tests show no issues.
We have no idea WHAT it could be. Mom keeps hoping it will be fixed. But she also has a 2 year pattern of getting angry at the doctors, cancelling appointments, and still declining. I don't know if we are too late at this point. She needs home care, which she refuses. She has fallen over a handful of times, which has caused her to be so fearful. She gets up and sits in a chair all day. From about 7:30a.m. til 10:30 p.m. Doesn't drink much at all in order to not have to use the toilet.
This is a lot of information, I apologize. But I don't know anyone else in this position. And I don't know what to do. I am POA, but I live out of state. I just came home to arrange care for her, and she refused it. She cancelled what I had put in place. So now I play the waiting game until she sees that if she wants to avoid a nursing home, she will have to pay for home aides. I have a social worker who is paying a home visit soon to assess and hopefully talk her into it.