Re: Re: Question re knee contractions

April 9, 2012

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

> **

>

> 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

> > >

> >

>

April 9, 2012

Robin,

I just want to be sure there is no torn or otherwise damaged soft tissue

structure that might be causing this as it came on " overnight. " Saturday

Bob was able to straighten the right leg without pain, then suddenly on

Sunday April 1st when I came to visit he was having pain and issues with

straightening it or bearing weight on it. I suspect something happened to

him, like over flexing his legs using the hoyer lift at more than a 45

degree angle post hip surgery. I read that they are not supposed to flex

the leg past a 45 degree angle. The CNA's are doing it to him all the time

there! The nurses say it is okay to do that with a hip replacement and

that they do it all the time there. Not according to my research. I

fear that someone has caused some injury to his leg and not reported it.

He cannot explain anything that may have happened to him. The CNA's at

the Rehab Center are all young girls about 18-21 years old with little

experience. I just want to be sure that is not what is wrong.

Pat M.

On Mon, Apr 9, 2012 at 8:31 PM, rriddle_travel

wrote:

> **

>

> 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

> >

>

April 9, 2012

Bob was up transferring from bed to chair and the hospital PT had him

walking in the hall with his walker at the hospital just three days before.

When he was transferred to the Rehab Center he was so traumatized by the

transfer and all the strange people and place that they began using the

hoyer lift with him instead of even trying to have him stand and pivot with

his walker as the hospital was doing. I was very upset when I got there to

visit the day after he arrived and saw them using the hoyer lift on him and

flexing his legs past a 45 degree angle. They are also not positioning him

properly in the wheelchair or the bed. He is always twisted with his legs

going one way and his upper body the opposite direction. It's like the

CNA's either don't know how the position him or just don't care.

Pat M.

On Mon, Apr 9, 2012 at 10:30 PM, Mayhew wrote:

>

> Robin,

> I just want to be sure there is no torn or otherwise damaged soft tissue

> structure that might be causing this as it came on " overnight. " Saturday

> Bob was able to straighten the right leg without pain, then suddenly on

> Sunday April 1st when I came to visit he was having pain and issues with

> straightening it or bearing weight on it. I suspect something happened to

> him, like over flexing his legs using the hoyer lift at more than a 45

> degree angle post hip surgery. I read that they are not supposed to flex

> the leg past a 45 degree angle. The CNA's are doing it to him all the time

> there! The nurses say it is okay to do that with a hip replacement and

> that they do it all the time there. Not according to my research. I

> fear that someone has caused some injury to his leg and not reported it.

> He cannot explain anything that may have happened to him. The CNA's at

> the Rehab Center are all young girls about 18-21 years old with little

> experience. I just want to be sure that is not what is wrong.

> Pat M.

>

> On Mon, Apr 9, 2012 at 8:31 PM, rriddle_travel <rriddle@...

> > wrote:

>

>> **

>>

>> 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

>> >

>>

>

April 9, 2012

I wanted to add that my mom had many rounds of botox for various contractures

and there was no positive effect at all. I thought it was needlessly painful

and wouldnâ€™t recommend it.

Courage

From: rriddle_travel

Sent: Monday, April 09, 2012 9:31 PM

To: LBDcaregivers

Subject: Re: Question re knee contractions

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

>

April 10, 2012

Well, now we know why my husband Bob has been in so much pain and unable to

straighten his right leg or bear weight on it after going to his orthopedic

surgeon today. His right hip is dislocated and the doctor admitted Bob to

the hospital right away. Bob will have to have his hip replacement surgery

done all over again. He is scheduled for surgery at 4:00 PM tomorrow.

That stupid Rehab Center let my poor husband go for 10 days in

excruciating pain and told me there was nothing wrong with the leg on the x

ray they took last week. I think he is almost too weak and debilitated to

survive another hip surgery. This is so awful!

Pat M.

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

> **

>

> I wanted to add that my mom had many rounds of botox for various

> contractures and there was no positive effect at all. I thought it was

> needlessly painful and wouldn’t recommend it.

> Courage

>

> From: rriddle_travel

> Sent: Monday, April 09, 2012 9:31 PM

> To: LBDcaregivers

> Subject: Re: Question re knee contractions