Re: Question re knee contractions

[Guest guest]

Hi, Pat. While not exactly the same as your husband's, my mother also had

contractions in her legs that resisted therapy. Her first problem came on

suddenly with a UTI, in September of 2006. It was as if she forgot how to bend

her legs at first. Her legs were as stiff as a board. Whether she had pain at

the time, I don't know. The UTI caused so many sudden issues that any pain

would have not been isolated to any one location in our minds. That extreme

reaction to the UTI did eventually resolve itself.

Fast forwarding to 2007, another UTI and dehydration brought about

hospitalization for a week. I won't go into details beyond if I had known then

what I know now... <sigh> However, when she left the hospital (I think it was

September, 2007), she had grown considerably weaker and never bounced back. By

November, 2007, she lost the ability to walk and, shortly after, lost the

ability to support her weight. Her knees were bent but not as bad as they would

ultilmately become, contributing to further problems. Once she lost that

ability, the knees quickly became more contracted and remained that way for the

duration of her disease. She passed on March 5 with several years of both legs

permanently contracted as if in a sitting position.

I was the one who stopped PT and OT when the contractions became more prominent.

Yes, it was painful for her then...painful to have the limbs extended and moved

about. I saw no positive change in her and decided it wasn't worth the pain for

her to continue therapy, trying to defy what nature seemed intent on causing.

We did try a regular dose of Tylenol for the pain but that addition was

reflected in labwork as causing a strain on her liver. At that point, I just

gave her a dose of Children's Liquid Motrin when she seemed to be in pain,

reading her facial expression for clues.

Interestingly, the pathology done on Mom's brain tissue following her passing

did show that the substantia nigra " has marked neuronal loss. " I understand that

this is where Parkinsonism symptoms originate. I feel better about my decision

to stop PT after reading that. It would have been fighting what was bound to

happen, possibly causing more discomfort for Mom than allowing the contractures

to occur without interference. I'm not a doctor or a nurse and might be wrong

in my conclusion but it seems like one plus one equals two.

Sometimes, I had to let go and not get in the way of what was happening to Mom's

body. That was hard to do but the decline of this disease often made it

necessary.

My best wishes to you on this journey. It's not an easy one for sure.

Best wishes,

Lynn in Florida

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>

> Jeff, and All,

> Anyone here have experience with your LO developing contracted bent

> knees in the space of a week's time? My husband Bob was sent to a

> rehab center from the hospital about 9 days ago after a strep

> infection in his blood. Since arriving at the Rehab Center, actually after

only being there 3 days, he started complaining of pain in his right thigh area

and will not straighten his right leg or even try to bear weight on it at all.

In the hospital he was up walking in the hall with the PT. Now he is unable to

even try to stand or walk or excercise his legs. He is keeping both knees bent

all the time. The physical therapists at the rehab center are unable to do

anything with him. They are not even trying to do passive range of motion with

his legs. This is only getting worse. <snip

[Guest guest]

Pat M,

I am so sorry to hear about Bob's condition. I am not a physician, but it would

seem to me the best or maybe the first thing to address is to have a medical

work up to eliminate many of the more obvious causes as soon as possible. I am

assuming the nurses at the rehab center have monitored his vitals and checked

pulses in both legs. I couldn't begin to speculate on what might be the cause.

It is difficult to asses the care provided by the rehab center. Have they seen

these types of symptoms in patients in the past? Is there the possibility of a

fall at some point?  It might be something very understandable like a cramp

etc. But you deserve a satisfactory explanation.

I certainly can understand how distraught you must feel. If at some point you

feel his overall safety is in jeopardy or your comfort level with the feedback

provided by the rehab center has not satisfied your concerns you could always

have him taken to the ER for an evaluation.

I wish you both the very best. And please keep us all updated on Bob's progress.

God Bless

 

Jeff 

When you feel like giving up, remember why you held on for so long in the first

place. " ~ Unknown

>________________________________

>

>To: LBD_caringspouses ; LBDcaregivers

>Sent: Sunday, April 8, 2012 10:15 AM

>Subject: Question re knee contractions

>

>

> 

>Jeff, and All,

>Anyone here have experience with your LO developing contracted bent

>knees in the space of a week's time? My husband Bob was sent to a

>rehab center from the hospital about 9 days ago after a strep

>infection in his blood. Since arriving at the Rehab Center, actually

>after only being there 3 days, he started complaining of pain in his

>right thigh area and will not straighten his right leg or even try to

>bear weight on it at all. In the hospital he was up walking in the

>hall with the PT. Now he is unable to even try to stand or walk or

>excercise his legs. He is keeping both knees bent all the time. The

>physical therapists at the rehab center are unable to do anything with

>him. They are not even trying to do passive range of motion with his

>legs. This is only getting worse. They did an xray of his right hip

>and pelvis last Tuesday to check to see if his hip replacement surgery

>from Jan. 9th is okay. The x ray came back okay. I have an

>appointment with the ortho surgeon who did Bob's surgery on Tuesday

>the 10th to have him see what is wrong. I am very upset and frantic

>because the rehab center seems to have given up on trying to work with

>Bob and he is only getting more bent and contracted and they are not

>doing anything for him but giving him tylenol for the pain! Anyone

>else experience this?

>Pat M.

>Wife/caregiver of Bob 75, Dx PD 2003, LBD 2009, Hip Replacement post

>fracture Jan 9, 2012, Septicemia March 2012

>

>

>

>

[Guest guest]

Pat M.,

For my father, the knee contractures were the beginning of the end. As with

your husband, the contractures prevented my dad from straigtening his legs to

walk. His heels were touching his butt, and often he was in a fetal position

with his knees to his chest. In his case, the contractures became extremely

painful whenever his legs were moved. He had to be rolled in bed every 2 hours

to prevent bed sores, so that caused pain. He was so rigid that he was no

longer able to move on his own.

Based upon that experience, I'd recommend you putting your most aggressive hat

on and:

* learn the range-of-motion exercises yourself, and start doing them multiple

times a day

* you may have to move your husband from the rehab center to a skilled nursing

facility. Find a facility that has " restorative care " aides who are staffed in

order to provide these ROM exercises at least twice a day.

* hire someone to do the ROM exercises with your husband

* hire a massage therapist who can work on your husband several times a week

* see if you can get botox injections ordered for the joint contractures. You

may have to pay for these yourself.

* if there's pain involved, try different pain meds until you can find something

that works

* try some medication for the rigidity. (I've posted on the LBDA Forum

extensively on both the pain meds and rigidity meds we tried. You can do a

search of the posts there by author " robin " and containing the word " Dantrium " )

This was the worst aspect of neurodegenerative decline for my father. I began

praying for a release from the pain, even if it meant his death.

Robin

>

> Jeff, and All,

> Anyone here have experience with your LO developing contracted bent

> knees in the space of a week's time? My husband Bob was sent to a

> rehab center from the hospital about 9 days ago after a strep

> infection in his blood. Since arriving at the Rehab Center, actually

> after only being there 3 days, he started complaining of pain in his

> right thigh area and will not straighten his right leg or even try to

> bear weight on it at all. In the hospital he was up walking in the

> hall with the PT. Now he is unable to even try to stand or walk or

> excercise his legs. He is keeping both knees bent all the time. The

> physical therapists at the rehab center are unable to do anything with

> him. They are not even trying to do passive range of motion with his

> legs. This is only getting worse. They did an xray of his right hip

> and pelvis last Tuesday to check to see if his hip replacement surgery

> from Jan. 9th is okay. The x ray came back okay. I have an

> appointment with the ortho surgeon who did Bob's surgery on Tuesday

> the 10th to have him see what is wrong. I am very upset and frantic

> because the rehab center seems to have given up on trying to work with

> Bob and he is only getting more bent and contracted and they are not

> doing anything for him but giving him tylenol for the pain! Anyone

> else experience this?

> Pat M.

> Wife/caregiver of Bob 75, Dx PD 2003, LBD 2009, Hip Replacement post

> fracture Jan 9, 2012, Septicemia March 2012

>

[Guest guest]

Robin,

Thank you for the info regarding ROM and massage therapy!!! Never entered my

mind, but then nothing much enters my mind anymore...can you say burn out?

It has been a while since I have been here...after lots of support here I

finally put my husband in an assisted living facility the last year. Mainly

because I am caring for my mom (dad in Alz. facility, raising our 13 yr old

grandson, and running our business...whew!!

About 9 months ago my husband's right hand contracted at the wrist. He could

use it, for several months, only if you told him to. His brain was not sending

the signal to the hand (is that why it begins to contract?). Now he can not use

it all. I finally placed him in a skilled nursing facility in February, because

since November he can no longer stand or walk with his walker. This can be a

fast acting disease at times.

> >

> > Jeff, and All,

> > Anyone here have experience with your LO developing contracted bent

> > knees in the space of a week's time? My husband Bob was sent to a

> > rehab center from the hospital about 9 days ago after a strep

> > infection in his blood. Since arriving at the Rehab Center, actually

> > after only being there 3 days, he started complaining of pain in his

> > right thigh area and will not straighten his right leg or even try to

> > bear weight on it at all. In the hospital he was up walking in the

> > hall with the PT. Now he is unable to even try to stand or walk or

> > excercise his legs. He is keeping both knees bent all the time. The

> > physical therapists at the rehab center are unable to do anything with

> > him. They are not even trying to do passive range of motion with his

> > legs. This is only getting worse. They did an xray of his right hip

> > and pelvis last Tuesday to check to see if his hip replacement surgery

> > from Jan. 9th is okay. The x ray came back okay. I have an

> > appointment with the ortho surgeon who did Bob's surgery on Tuesday

> > the 10th to have him see what is wrong. I am very upset and frantic

> > because the rehab center seems to have given up on trying to work with

> > Bob and he is only getting more bent and contracted and they are not

> > doing anything for him but giving him tylenol for the pain! Anyone

> > else experience this?

> > Pat M.

> > Wife/caregiver of Bob 75, Dx PD 2003, LBD 2009, Hip Replacement post

> > fracture Jan 9, 2012, Septicemia March 2012

> >

>

[Guest guest]

Pat M,

Joint contractures are a known problem for some with neurodegenerative diseases.

(They are mentioned in " The 36-Hour Day, " for example, as occurring in AD and

other dementias.) Perhaps the stiffened tendons (that are not relaxing such

that they aren't allowing the joint to open) can be seen on an MRI. I'm unclear

how a scan will a scan help clarify treatment. Treatment is through botox

injections, ROM exercises, massage, muscle relaxers, and pain meds. After a few

weeks, we abandoned the goal of Dad ever walking again and focused on pain

relief. At that point, I brought in hospice because they knew more about pain

relief than the staff at the skilled nursing facility. I'm sorry if your

husband is headed down the same path.

Robin

>

> Robin,

> Thank you for the information and sharing your father's story. We have an

appointment tomorrow at 1:00PM with the orthopedic surgeon who did Bob's hip

replacement surgery in January 2012. I want to ask him to get an MRI of the

entire right leg to see if there is any torn muscles or tendons that could be

causing him so much pain that he will not straighten that leg or put any weight

on it. I will let you know what happens. I am so sorry about the way this

horrible disease affected your father. I am beginning to pray for my husband

that God will be merciful to him and release him from the clutches of Lewy. It

is heartbreaking to visit him and see him so far declined.

> Best Regards,

> Pat M.

> Wife/caregiver of Bob 75, dx PD 2003, LBD 2009

>