My mom is 75 and has been living with PPMS for 25 years

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My mom is 75 and has been living with PPMS for 25 years

Postby onebravegirl » Tue Mar 06, 2018 3:07 pm

I have watched my Mom decline for 25 years. She is lucky enough to be living at home with a 24 hour caregiver. She has been non weight bearing for more than a decade and has the use of one arm - sort of. She needs a lift to get out of bed and has a Class 4 wheelchair. She has cognitive decline and struggles following instructions that have more than 1 or 2 steps. She is struggling with retaining water. Her legs and ankles are HUGE. I don't know how long her heart can could possible circulate blood through her massively enlarged body. Her bloodwork is normal and she is taking a diuretic. She watches all of her carbs and eats a very low fat, low sodium, high veggie diet. Her respiratory secretions are getting worse, she coughs a lot and can't cough up all of her phlegm. It is scary sometimes being with her and listening to her trying to clear her throat. When she heads to her primary care and MS doctor, they don't have any comment on her current situation or symptoms. She takes Empira, inhalers, etc. But has you guys know, there is not much out there for Secondary or Primary Progressive MS.

I am trying to get a sense for where my Mom is in the disease process because I am the type of person who likes prognoses, I like information even if it is not what I want to hear. I get the feeling that she may have another few years.

Does anyone have any insight in situations like this? I realize none of you are doctor's. I reached out to her MS physician (I am healthcare POA, and Financial POA and co-trustee of her account) and found out she just left the practice. Ugh.

Any info is most appreciated.

Peace.
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Re: My mom is 75 and has been living with PPMS for 25 years

Postby NHE » Wed Mar 07, 2018 6:13 am

It sounds like your mother has fairly bad edema in her legs. Is she undergoing any treatment for it? When I was in the hospital about 4 years ago, they had me hooked up to a pneumatic pump which forced air into leg wraps which compressed my legs and increased circulation in my legs and feet. The pump and leg wraps were nearly identical to the pump and wraps listed on the following site. http://www.betterlivingnow.com/products ... 8890600010

There are also other pumps available. Here's another example.
DVT Pump: https://www.tigermedical.com/Products/C ... 5150-.aspx
DVT Compression Sleeve: https://www.tigermedical.com/Products/L ... 01H1-.aspx

There's also one that's designed for home usage.
https://www.ossur.com/injury-solutions/ ... e-care-kit

Does she do any exercise or engage in any movement therapy? There are motorized pedal and movement devices which might be of benefit. Here are some examples.

Theracycle: http://theracycle.com/

Ex N’ Flex: http://exnflex.com/

Motomed: http://www.motomed.com/en/products/

Exerpeutic (a less expensive option): https://www.amazon.com/Exerpeutic-Motor ... 001IV6MV6/
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Re: My mom is 75 and has been living with PPMS for 25 years

Postby onebravegirl » Wed Mar 07, 2018 9:05 am

Thank you for your thoughtful reply. Her physicians are not suggesting any treatment for her (argh). I have a call into them and will ask them about these pumps that you referenced. She may benefit from the passive active therapy devices. I will ask her docs. Thank you.
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Re: My mom is 75 and has been living with PPMS for 25 years

Postby NHE » Fri Mar 09, 2018 2:16 am

NHE wrote:Does she do any exercise or engage in any movement therapy? There are motorized pedal and movement devices which might be of benefit. Here are some examples.

Theracycle: http://theracycle.com/

Ex N’ Flex: http://exnflex.com/

Motomed: http://www.motomed.com/en/products/

Exerpeutic (a less expensive option): https://www.amazon.com/Exerpeutic-Motor ... 001IV6MV6/

Here's another example available on Amazon that works both the upper and lower body.

HCI Fitness E-Trainer: https://www.amazon.com/HCI-Fitness-eTra ... 00GY07KTO/

https://www.youtube.com/watch?v=1xRkHiBc1Xo
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