Caregiving is a full time job. It includes nursing duties, nutrition & laundry services , and PT/ entertainment. But it can be done by a healthy partner.
Kids and friends as visitors have a positive impact on state of mind in general. Not spending too much time watching TV is a daily challenge.
In terms of regeneration after resolving the diffuse brain tumor/lesion the exercise regimen seems to be key for regaining some independence.
I read that the Mayo Clinic has a multifunctional team working on nerve regeneration mechanisms. It was mentioned that there is a very large patient base (stroke, MS, Parkinson, progressive palsy, etc) where nerve malfunction plays a similar role. The number of CNS lymphoma patients is relatively small. Is there a way of finding new rehabilitation methods? Probably not or they are in a clinical test phase . Our leading lymphoma institution has not brought it up.
That must be exhausting for both of you. I'm sure she finds it hard to be so dependent on the help of others as well. Do you have others who give you respite?
Caregiving is a full time job. It includes nursing duties, nutrition & laundry services , and PT/ entertainment. But it can be done by a healthy partner.
Kids and friends as visitors have a positive impact on state of mind in general. Not spending too much time watching TV is a daily challenge.
In terms of regeneration after resolving the diffuse brain tumor/lesion the exercise regimen seems to be key for regaining some independence.
I read that the Mayo Clinic has a multifunctional team working on nerve regeneration mechanisms. It was mentioned that there is a very large patient base (stroke, MS, Parkinson, progressive palsy, etc) where nerve malfunction plays a similar role. The number of CNS lymphoma patients is relatively small. Is there a way of finding new rehabilitation methods? Probably not or they are in a clinical test phase . Our leading lymphoma institution has not brought it up.
PT started in Oct. 2021. So we are half a year into trying to get more independence. Using a cane in the house with me holding the weak , left arm is allowing my wife to walk to the kitchen, bathroom, bedroom. Ambulating a walker on a straight flat sidewalk is possible without support: the left had can hold on to it . After 30 min her left foot is not coming up properly. She needs a break. The risk of a fall his high and someone needs to be close all the time. Getting dressed is a challenge. The frozen shoulder has improved to an extent that getting out or in sweaters does not cause pain anymore. But lifting the left arm is not possible and thus dressing/showering/ bathroom is not possible without support. She now practices daily to pick up little pieces of plastic foam or corks.
The finger movements are limited.
She needs help 24/7 but .. the input we get from rehab physicians is similar to yours . Nerve regeneration takes time.
That must be exhausting for both of you. I'm sure she finds it hard to be so dependent on the help of others as well. Do you have others who give you respite?
PT started in Oct. 2021. So we are half a year into trying to get more independence. Using a cane in the house with me holding the weak , left arm is allowing my wife to walk to the kitchen, bathroom, bedroom. Ambulating a walker on a straight flat sidewalk is possible without support: the left had can hold on to it . After 30 min her left foot is not coming up properly. She needs a break. The risk of a fall his high and someone needs to be close all the time. Getting dressed is a challenge. The frozen shoulder has improved to an extent that getting out or in sweaters does not cause pain anymore. But lifting the left arm is not possible and thus dressing/showering/ bathroom is not possible without support. She now practices daily to pick up little pieces of plastic foam or corks.
The finger movements are limited.
She needs help 24/7 but .. the input we get from rehab physicians is similar to yours . Nerve regeneration takes time.
Hi @kippi1950, I wanted to add my welcome to @secglc2's.
I'm so glad to hear that there is no indication of recurrence. What a relief.
Frozen shoulder can take such a long time to rehabilitate. It took me about 13 months to get 80% of my range of motion back. Now 2 years later, I believe I have full use of my arm and strength. It took persistence, patience and dedication to keeping with the daily routine. I found it tedious and hard.
In my case, the cause of frozen shoulder was unknown. Your wife and @secglc2 had more to overcome.
@secglc2, I'm glad that physical therapy helped you. Would you mind sharing how long it took?
Kippi, how long has your wife been doing therapy? Is it a challenge to do the rehab exercises and stick to them?
My 73 year old wife was diagnosed with CNS lymphoma in May 2021. She had 4 M-RVP cycles as induction therapy and 2 cytarabine treatments as consolidation follow up. The brain lesion was resolved (contrast brain MRI ) after 4 induction treatments. She recently had her 4th bimonthly MRI with no indication of recurrence.
Her most severe clinical symptoms were a frozen left shoulder and a left hand contracture. Her left foot/leg movements are impaired. Rigorous PT/OT has not had a substantial effect on motor skills and independence.
The rehab physician has suggested braces but effects are minimal. Any alternative rehab methods for a patient with an excellent prognosis?
Hi @kippi1950, I wanted to add my welcome to @secglc2's.
I'm so glad to hear that there is no indication of recurrence. What a relief.
Frozen shoulder can take such a long time to rehabilitate. It took me about 13 months to get 80% of my range of motion back. Now 2 years later, I believe I have full use of my arm and strength. It took persistence, patience and dedication to keeping with the daily routine. I found it tedious and hard.
In my case, the cause of frozen shoulder was unknown. Your wife and @secglc2 had more to overcome.
@secglc2, I'm glad that physical therapy helped you. Would you mind sharing how long it took?
Kippi, how long has your wife been doing therapy? Is it a challenge to do the rehab exercises and stick to them?
I was diagnosed with primary CNS lymphoma in March 2019. I had 6 rounds of MRT chemo, then stem cell transplant. I remain clear of the disease. I had a stroke when brain biopsy was done. I lost feeling on my left side, but physical therapy helped me. I pray that your wife will regain control of her movements.
My 73 year old wife was diagnosed with CNS lymphoma in May 2021. She had 4 M-RVP cycles as induction therapy and 2 cytarabine treatments as consolidation follow up. The brain lesion was resolved (contrast brain MRI ) after 4 induction treatments. She recently had her 4th bimonthly MRI with no indication of recurrence.
Her most severe clinical symptoms were a frozen left shoulder and a left hand contracture. Her left foot/leg movements are impaired. Rigorous PT/OT has not had a substantial effect on motor skills and independence.
The rehab physician has suggested braces but effects are minimal. Any alternative rehab methods for a patient with an excellent prognosis?
@clavallee2 Such wonderful news!! I see that you have been a member of Connect for awhile. I’m sure that you have interfaced with @loribmt and the Transplant group, but i included the link anyway. https://connect.mayoclinic.org/group/transplants/
What specific things do you do now to take care of yourself and stay healthy?
I was diagnosed with primary CNS lymphoma in March 2019. I had 6 rounds of chemo, then stem cell transplant. I’m celebrating 2 1/2 years of being cancer free!
@clavallee2 Such wonderful news!! I see that you have been a member of Connect for awhile. I’m sure that you have interfaced with @loribmt and the Transplant group, but i included the link anyway. https://connect.mayoclinic.org/group/transplants/
What specific things do you do now to take care of yourself and stay healthy?
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Kippi, you can stay up to date on Mayo Clinic’s advances in regenerative medicine and nerve regeneration on this website:
Center for Regenerative Medicine https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/about
There is also contact information where you can ask about current studies.
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1 ReactionCaregiving is a full time job. It includes nursing duties, nutrition & laundry services , and PT/ entertainment. But it can be done by a healthy partner.
Kids and friends as visitors have a positive impact on state of mind in general. Not spending too much time watching TV is a daily challenge.
In terms of regeneration after resolving the diffuse brain tumor/lesion the exercise regimen seems to be key for regaining some independence.
I read that the Mayo Clinic has a multifunctional team working on nerve regeneration mechanisms. It was mentioned that there is a very large patient base (stroke, MS, Parkinson, progressive palsy, etc) where nerve malfunction plays a similar role. The number of CNS lymphoma patients is relatively small. Is there a way of finding new rehabilitation methods? Probably not or they are in a clinical test phase . Our leading lymphoma institution has not brought it up.
That must be exhausting for both of you. I'm sure she finds it hard to be so dependent on the help of others as well. Do you have others who give you respite?
PT started in Oct. 2021. So we are half a year into trying to get more independence. Using a cane in the house with me holding the weak , left arm is allowing my wife to walk to the kitchen, bathroom, bedroom. Ambulating a walker on a straight flat sidewalk is possible without support: the left had can hold on to it . After 30 min her left foot is not coming up properly. She needs a break. The risk of a fall his high and someone needs to be close all the time. Getting dressed is a challenge. The frozen shoulder has improved to an extent that getting out or in sweaters does not cause pain anymore. But lifting the left arm is not possible and thus dressing/showering/ bathroom is not possible without support. She now practices daily to pick up little pieces of plastic foam or corks.
The finger movements are limited.
She needs help 24/7 but .. the input we get from rehab physicians is similar to yours . Nerve regeneration takes time.
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1 ReactionIt took about one year to get full range of motion back.
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1 ReactionHi @kippi1950, I wanted to add my welcome to @secglc2's.
I'm so glad to hear that there is no indication of recurrence. What a relief.
Frozen shoulder can take such a long time to rehabilitate. It took me about 13 months to get 80% of my range of motion back. Now 2 years later, I believe I have full use of my arm and strength. It took persistence, patience and dedication to keeping with the daily routine. I found it tedious and hard.
In my case, the cause of frozen shoulder was unknown. Your wife and @secglc2 had more to overcome.
@secglc2, I'm glad that physical therapy helped you. Would you mind sharing how long it took?
Kippi, how long has your wife been doing therapy? Is it a challenge to do the rehab exercises and stick to them?
I was diagnosed with primary CNS lymphoma in March 2019. I had 6 rounds of MRT chemo, then stem cell transplant. I remain clear of the disease. I had a stroke when brain biopsy was done. I lost feeling on my left side, but physical therapy helped me. I pray that your wife will regain control of her movements.
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Helpful -
Hug
2 ReactionsMy 73 year old wife was diagnosed with CNS lymphoma in May 2021. She had 4 M-RVP cycles as induction therapy and 2 cytarabine treatments as consolidation follow up. The brain lesion was resolved (contrast brain MRI ) after 4 induction treatments. She recently had her 4th bimonthly MRI with no indication of recurrence.
Her most severe clinical symptoms were a frozen left shoulder and a left hand contracture. Her left foot/leg movements are impaired. Rigorous PT/OT has not had a substantial effect on motor skills and independence.
The rehab physician has suggested braces but effects are minimal. Any alternative rehab methods for a patient with an excellent prognosis?
I walk every day & eat healthy!
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1 Reaction@clavallee2 Such wonderful news!! I see that you have been a member of Connect for awhile. I’m sure that you have interfaced with @loribmt and the Transplant group, but i included the link anyway.
https://connect.mayoclinic.org/group/transplants/
What specific things do you do now to take care of yourself and stay healthy?