Everyday Tips When Living with PPMS: Your Bedroom and Dressing - National MS Society
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- Опубликовано: 8 сен 2024
- MS Learn Online is the National MS Society's online educational webcast series. This video features Shelley Peterman Schwarz, who gives tips for living with primary-progressive multiple sclerosis when in the bedroom.
Ideal advice especially for the rare M.S such as Primary Progressive P.P.M.S.
In the U.K, the rate is as low as 3% out of 65 million residents have this rare incurable disease of PPMS.
It explains why there is more research into RRMS where meds are successful, and not so much research into PPMS with it's slow rotting of our brains & bodies.
The lady in the video is not to be envied for her financial abilities to afford drive in closets or walk in wardrobes. Her advice to prepare her clothing for the next day is possible for all with or without any type of M.S
This positive lady is very disabled with non visible brain damage, fatigue, lack of cognition, maybe eyesight, tremors.
Yet she doesn't complain.....she is finding other ways of managing this cruel disease with no cure instead.
PPMS is very rare and without successful treatment, so why would anyone even think she's lucky?
Whenever my positivity or humour fades into hopelessness, it takes a brilliant outlook to find something to be grateful for.
This lady's progression is further on than my own, but I still spend many days unable to get out of bed. Thanks to this video I've learned I'll move easier with sheets I can slide on for better comfort. Even a change of pillows makes a difference.
I can't walk and my driving licence was revoked on diagnosis and PPMS damage.
Yes, it was a heavy blow but I can now book a taxi, catch a bus, train, boat or plane. with planning, there's nowhere I can't get to
I've taken up juicing & blending & feel good with 10 nutritious veg, fruit, each day.I
I admire this lady and her insight to view her bedroom as her sanctuary, her own haven,. How much better is that viewpoint than feeling she's imprisoned, dependent etc.
Thanks SO much for the Video
PPMS RUINED MY LIFE
Some of this is relevant to me, but so much requires money and that's not something we have a lot of. When I see her built in closets, and think about the ability to afford all of the bedroom redos... I just think about how frustrating my life is now.
These tips are very nice but, i doubt the majority of people can 'drive' into their closets, bathroom or bedrooms. I am now aware of how stress free PPMS is made tolerable...dx w/ PPMS in 2004
IM 61 WITH PPMS, IT HAS RUINED MY LIFE AND IM LONELY
Keeping it real .
I respect that ..
Strange disease sometimes huh .
We're still here doggie ..
One foot in front of the other yeah ?
interesting I have a remote just for lights etc. I keep the TV remove separate. Furthermore I may be in a complex rehab power chair but I do not have MS... I found this when looking for something else.
Am among M.S patients who live in poor family since i have diagnosed till i didn't get any treatment and my condition everyday going to be weak my doctor told to find some medicine but i can't afford to buy it cuz is so expensive
And i am students i need to continue with my subject but it be hard because of my condition and my wheelchair is broken it make me feel bad
If anyone can help me atleast to buy medicine i will appreciate it and i will be so grateful 😥😪