OT Transverse Myelitis (Living with paralysis)

[PtldPlatypus]

Backstory: A couple months ago, my 44-year-old sister-in-law woke up with surprising and unexplained back pain. After several hours of trying to deal with it on her own, and it worsening progressively, she made her way to the hospital, at which point her legs started to fail her. By the end of the day, her legs had gone numb, and she has been unable to walk since. Within a couple days she was diagnosed with a rare condition called transverse myelitis, which is characterized by lesions on the spinal cord which essentially block neural flow. Prognosis is not great--about 1/3 of those who contract this condition are paralyzed permanently. With no feeling having yet been restored to the lower 2/3 of her body after 2 1/2 months, that outcome is beginning to look increasingly more likely.

So after spending a month in the hospital and another month at a rehab facility, she's been home for a couple weeks, and we're slowly learning everything that is involved in providing support to a paraplegic. I'm curious if anyone in this forum has any experience with supporting someone in a similar situation, and would be open to any suggestions to making life easier for her, and also for the primary caregivers who have taken up the mantle of assisting her with various day-to-day tasks since she has returned home.

 

[riverman]

I'm really sorry to hear this...I've cared for several quadraplegics over the years....one has made some progress with diet and physical therapy....salt is a no no for recovery and it's important to stop muscle mass deterioration by moving the limbs regularly as well as allowing blood to flow to the upper body by elevation...if you don't use it you lose it. I hope she recovers and gains some mobility..senior and disabled services has a lot of information that can aid in recovery..

 

[yankeesince59]

So after spending a month in the hospital and another month at a rehab facility, she's been home for a couple weeks, and we're slowly learning everything that is involved in providing support to a paraplegic. I'm curious if anyone in this forum has any experience with supporting someone in a similar situation, and would be open to any suggestions to making life easier for her, and also for the primary caregivers who have taken up the mantle of assisting her with various day-to-day tasks since she has returned home.

...hey man, sorry to hear about your Sister in Law...I've been through a similar situation and at the risk of sounding like Capt Obvious or seeming to be over simplifying your situation, the only advice I can offer is no matter what stay positive and upbeat while around her and try to ensure that her other relatives do the same. Simple things like cracking jokes and making her smile or laugh can actually be beneficial to her morale/state of mind....needless to say, treat her as you would like to be treated.

...as far as the clinical part, well, I suppose you just have to trust the "experts".

 

[SlyPokerDog]

Backstory: A couple months ago, my 44-year-old sister-in-law woke up with surprising and unexplained back pain. After several hours of trying to deal with it on her own, and it worsening progressively, she made her way to the hospital, at which point her legs started to fail her. By the end of the day, her legs had gone numb, and she has been unable to walk since. Within a couple days she was diagnosed with a rare condition called transverse myelitis, which is characterized by lesions on the spinal cord which essentially block neural flow. Prognosis is not great--about 1/3 of those who contract this condition are paralyzed permanently. With no feeling having yet been restored to the lower 2/3 of her body after 2 1/2 months, that outcome is beginning to look increasingly more likely.

So after spending a month in the hospital and another month at a rehab facility, she's been home for a couple weeks, and we're slowly learning everything that is involved in providing support to a paraplegic. I'm curious if anyone in this forum has any experience with supporting someone in a similar situation, and would be open to any suggestions to making life easier for her, and also for the primary caregivers who have taken up the mantle of assisting her with various day-to-day tasks since she has returned home.

Oh man, that's rough.

 

[PtldPlatypus]

Oh man, that's rough.

Yeah, even moreso when you factor in that she's a single mom to a 3-year-old boy. Been pretty tough on him being shuttled around to various family members while she was in the hospital, and it's been really tough on her trying to parent while not being able to walk. There's only so much law one can lay down while unable to follow your child to the other side of the house.

 

[riverman]

Yeah, even moreso when you factor in that she's a single mom to a 3-year-old boy. Been pretty tough on him being shuttled around to various family members while she was in the hospital, and it's been really tough on her trying to parent while not being able to walk. There's only so much law one can lay down while unable to follow your child to the other side of the house.

She should apply for 24 hour caregiver service through disabled services...caregivers can provide for her what she cannot physically handle. Until then I'd consider having a family member care for the child full time while she arranges for help in her home. Shuttling the child is not the most stable situation for the child.

 

[PtldPlatypus]

She should apply for 24 hour caregiver service through disabled services...caregivers can provide for her what she cannot physically handle. Until then I'd consider having a family member care for the child full time while she arranges for help in her home. Shuttling the child is not the most stable situation for the child.

Problem with caregiver services (from what I understand third-hand through her) is that she'd basically have to be drained of any and all assets to utilize that service. She has no interest in losing her house if she can avoid it.

As it stands, now that she's home, her son is at home with her, and various family members are rotating duty to assist her in home. The shuttling to various houses was only being done while she was still in the hospital/rehab.

 

[riverman]

Problem with caregiver services (from what I understand third-hand through her) is that she'd basically have to be drained of any and all assets to utilize that service. She has no interest in losing her house if she can avoid it.

As it stands, now that she's home, her son is at home with her, and various family members are rotating duty to assist her in home. The shuttling to various houses was only being done while she was still in the hospital/rehab.

not true....every client I had owned their house.one of them had an entire hundred acre estate...my last client owned two houses and one was a rental next door....she must apply for disability however to qualify for the services...there are expenses but nothing that would compare to private child care expenses or private funded therapy...get an appointment with disabled services and get a representative from there to guide her through the process...sooner the better. My experience with these folks has been nothing but positive...I promise nobody will try to take her assets away..they will only try to help her. There are copays for health care adjusted to income level but all in all...nothing like funding it alone. They will not drain her assets for profit if you use the state services available

 

[Chris Craig]

Backstory: A couple months ago, my 44-year-old sister-in-law woke up with surprising and unexplained back pain. After several hours of trying to deal with it on her own, and it worsening progressively, she made her way to the hospital, at which point her legs started to fail her. By the end of the day, her legs had gone numb, and she has been unable to walk since. Within a couple days she was diagnosed with a rare condition called transverse myelitis, which is characterized by lesions on the spinal cord which essentially block neural flow. Prognosis is not great--about 1/3 of those who contract this condition are paralyzed permanently. With no feeling having yet been restored to the lower 2/3 of her body after 2 1/2 months, that outcome is beginning to look increasingly more likely.

So after spending a month in the hospital and another month at a rehab facility, she's been home for a couple weeks, and we're slowly learning everything that is involved in providing support to a paraplegic. I'm curious if anyone in this forum has any experience with supporting someone in a similar situation, and would be open to any suggestions to making life easier for her, and also for the primary caregivers who have taken up the mantle of assisting her with various day-to-day tasks since she has returned home.

So sorry to hear about your sister in law. I once took care of a paraplegic. All I can say is to echo river and yankee. If she is shown that she will not be given up on, then she will be less likely to give up on herself. Show her that she is loved and her spirit will remain strong. Laugh and joke with her as you would before. Show her there is something left yet in her humanity. It is important for her to exercise her mind as well as her muscles. TM is very hard to come back from but not impossible. She sounds like a fighter. Fight with her.

 

[Lanny]

Backstory: A couple months ago, my 44-year-old sister-in-law woke up with surprising and unexplained back pain. After several hours of trying to deal with it on her own, and it worsening progressively, she made her way to the hospital, at which point her legs started to fail her. By the end of the day, her legs had gone numb, and she has been unable to walk since. Within a couple days she was diagnosed with a rare condition called transverse myelitis, which is characterized by lesions on the spinal cord which essentially block neural flow. Prognosis is not great--about 1/3 of those who contract this condition are paralyzed permanently. With no feeling having yet been restored to the lower 2/3 of her body after 2 1/2 months, that outcome is beginning to look increasingly more likely.

So after spending a month in the hospital and another month at a rehab facility, she's been home for a couple weeks, and we're slowly learning everything that is involved in providing support to a paraplegic. I'm curious if anyone in this forum has any experience with supporting someone in a similar situation, and would be open to any suggestions to making life easier for her, and also for the primary caregivers who have taken up the mantle of assisting her with various day-to-day tasks since she has returned home.

I've got paralysis of the diaphragm. It put me through two years of hell. Couldn't sleep in my own bed because of my coughing. Had to sleep at the dinette table with books and pillows piled high. Broke a rib because I was coughing to hard and so often like every 10 seconds or so. Doc said it was probably a bug that attacked my nervous system leading to the diaphragm. I'm now grateful that it wasn't the sort of your sister-in-law.

Your story changes my feelings about my injury.

 

[Lanny]

Problem with caregiver services (from what I understand third-hand through her) is that she'd basically have to be drained of any and all assets to utilize that service. She has no interest in losing her house if she can avoid it.

As it stands, now that she's home, her son is at home with her, and various family members are rotating duty to assist her in home. The shuttling to various houses was only being done while she was still in the hospital/rehab.

I'm pretty well off and I've had home nurse care on three occasions. They didn't care that I lived in a very nice home or had a lot of money saved. I got my health care through the VA but Medicare paid for it, all of it.