Dear fellow people with MS, how do you cope with progression? Today I could not lift my arm above my shoulder. I could not lift my toes (much) off the ground with my heels down. or spread my fingers as much as the other side. what's your secret?
thanks,
San
I haven't had much progression with my MS. But I am learning to deal with the aging process. I had covid in August which caused me to lose 20lbs in 3 weeks. That was a little too fast & now my skin is sagging all over. I'm glad to have the pounds gone though as I had been working on it. I'm still trying to deal with looking 10 years older in 3 weeks. I lost a lot of strength & dexterity too. But I'm taking it one day at a time with prayer & exercise. The prayer gives me peace & guidance & the exercise is building up my strength. I hope you can find what works best for you.
Hey, looking forward to responses.
I'm sorry, no secrets here. It is what it is.
thanks starlight5
No big secret here I have just learned I have to accept and play my own hand I was dealt. I turned everything over to my higher power and pray π. Use the Serenity Prayer daily and try to stay positive ππΌπππΎπΎ
thanks Kenu the program always works
I pretty much do as kenu said,
Finding humor in most things helps a great deal.
Occasional tantrums can be quite funny --after awhile, anyway.
Then there are the inspiring people out there and there are many. Many of them kids.
The way they deal with things is awesome.
Finding ways to keep doing what you love-hobbies, work and adjusting and adapting to new circumstances.
YES from the the moment I was dx'd I learned humor is so powerful! First I at 26 yrs old I demanded(who do I think I am lol) that the neuro tell me what the diagnosis was over the phone (I discovered that before I went in the mri tube it was took rule out a brain tumor π³). When he called & told me it was ms I yelled out OH THANK GOD So he told me that it was serious to where I replied "but it's not a tumor & ms I can handle" πͺAlso ms bonuses are:
-good parking βΏ
- you never have to go to jury duty again π
- you can use it as an excuse to get out of something that you don't want to do, but use it sparingly
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That is exactly what I did My Dr thought it was funny AFTER a while
Hahaha my neuro didn't think it was funny because he was part of a very prestigious group in NJ π I also left that group once I found a ms center and went to them. I've been going there for over 20 years
Yeah the one that told me was a ciropractor how ordered the MRI and then I sent to a MS Clinic h ere on Cleveland Oh They did not think it was funny but they did understand where I was coming from. My thoughts are I can handle this It is not a terminal DX That was 20 years ago and I still feel the same way
π§‘πͺThat's so great. I know a ms Dr at the Cleveland clinic Dr Robert Fox. I've never seen him personally though
I have hear of him and seen him walking around but never met him I had my first Dr for the first 15years and then she passed away now I have another one for the past 6 years I really miss my first Dr Stone
thanks falalalala i do have hobbies i haven't done lately. not sure if this is my new normal or an episode of relapse. It's been months.
If you can, take a break and do something you like.
If you are unable to do your hobbies, take time to relax, read, watch a movie, meditate, or call someone to try and take your mind off it for awhile.
I know it's hard, especially when you have to think about the simplest things others might take for granted such as where to place your foot with every step one takes (among other things)
yes! my book if/when i write it should be called "Things I used to take for granted." or the other title "Stories we tell ourselves."
π€£
I'd love to read it!
I'd have a chapter called, "How to Hook Your Bra in Under 30 Minutes"
"Shoelaces and Other Irritants Made Easy"
"Forgetting Things With Grace and Charm"
"Never Trust a Fart"
I really need this book! lol
π
We could all add
this is SO great! what chapters do others have to add? The bra one really got meπ
I bought a front-closure bra! Changed my life - I highly recommend. Adaptation rulesβ¦Good luck
Coping Solutions: burn the bra, Velcro shoes, Depends, sippy cups, married to a goof ball πππ
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I would "Alternatives to braiding your hair" because that is something else I have forgotten how to do after 40+ years.. Odd how things like that pop up
Chapter 7 is on fashion trends
I cover the Wild Mountain Hobo look extensively from personal experience.
Well-worn blue jeans, cast-off t-shirt from much-larger son, moccasins or bare feet, and faded flannel shirt?
Sure, when formal attire is required
π€£
Mum wanted me to dress up for Christmas this past year. So I bought myself a nice, new buffalo-plaid flannel shirt. She really should know better by now.
π π π
π€£ This needs to happen
β£οΈ your sense of humor
Get that book in the book stores! May I come to your book signing?
Sure!
I will be using a rubber stamp in lieu of writing my name though.
Read all about it Chapter 687 " Using A Rubber Stamp In Lieu of Signing My Name α΅Κ°α΅α΅α΅Κ°"
"Shoelaces and Other Irritants Made Easy" I got past this one. I literally forgot how to tie my own shoes. I bought some Reeboks that have velcro straps on them instead of laces.. hahahha
I have some slip on running shoes.
RUNNING SHOES!
π π π π π π
hahaha. that and my dancing shoes
I had a friend that uses a cane like me, the other has a prosthetic leg.
We used to talk about getting together for drinks and dancing.
In public of course
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running shoes? damn.. as if i could run... But DAMN!
Even though I can't do it anymore I can still feel what it feels like-if that makes sense.
π
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i am so sorry or is it just a bad start and will ease up ...i have had days where it seemed to be a bad day but after i got good a warm all was back to normal...so i can't help in this ,i hope there is someone that can relate and can help you ..hope it gets better for you ...
thanks very much. Usually better later in the day but still worse than last week/month.
Physical & occupational therapies are a true huge help. They will also teach you things to do at home to gain muscle memory (that's my therapists name for it lol) I've been going to an ms center that's connected to a hospital for the last 22 years. You can also call the national ms society 18003444867
thanks Jes. doing a home ex program does help. I try to do it 2-3 times/day.
That's great, good job. As long as we keep moving that's the best we can doπ§‘
thanks for your support
I can't offer anything except to go with the flow. I'm luckier than most in that I'm on SSDI now and don't have to deal with a job. Or a significant other or young children, for that matter. My time is my own, so everything's a lot easier for me.
If it's a good day, I have a simple routine that I follow that lets me accomplish a few practical matters before I sit down for the rest of the day. I no longer try to do everything and find as many shortcuts as possible. I can sweep and dust the main part of the house OR I can do laundry. I can use the riding mower OR I can cook a meal and wash dishes. I can go shopping with my mother OR I can take a shower. There's a very small window of opportunity, so I plan my day ahead of time.
If I'm having a bad day, I just go along with it. I sit or sleep or do whatever makes me feel a little better.
I also keep expanding my hobbies. I have a wide variety so that there's nearly always something that I can do, regardless of limb weakness or brain fog. I can no longer walk in my woods, so I've taken up bird-watching from the back porch, complete with decent binoculars and Audubon guides. A bright floor lamp with a flexible arm and a pair of tweezers helps me with stamp collecting. When my hands work, I put together small dioramas for my grown daughter's collection of Calico Critters. I have a hundred or so computer games that range from simple to complex. A lot of books. Online forums and hobby blogs. Emails, texts, and Skyping friends and relatives. A raised garden bed. I rarely trust myself with power tools anymore, but putting together birdhouse kits can be a lot of fun and still gives me the chance to play with wood.
Except for the days when I just want to sleep (like today!), there's always something that I can do that makes me feel good. I just follow my body and don't fight it, because that won't solve anything and will just frustrate me. I've learned to live in 15-minute increments.
Hi, thanks! i really like what you said about modifying hobbies and 15 minute increments. I've already lowered my standards on having a clean house. You can tell that I get easily frustrated, especially on the not good days. I think it has something to do with barometric pressure dropping or drastic changes in weather. Thanks to this forum i have also been introduced to wordle and hellowordle for after the first one is over and I'm not done playing.
The barometric pressure thing is real but people donβt believe me. We went from βfreezing coldβ (for us that is under 50F) to the mid-80s in only 2 days. It caused an earthquake but what bothered me more is that I slept for 12-14 hours a night and got bad cog fog. If we swing quickly from sunny to rainy weather I will wake up feeling as though Iβve been in a car accident.
YES! I am in Central FL.. we have this crazy weather whiplash going on for weeks! one front after another so warm and sunny, then raining and miserable then cold and sunny.. which i love.. then rinse and repeat.. but when the fronts are approaching I can tell ahead of time and people are like yeah, ok.. but my body is telling me the barometric pressure is dropping. When the hurricanes approach in the summer.. OMG! I am in AGONY.. The low low pressure of these storms just kill me.. nothing helps the pain.. and again, people look at me like i have 10 heads.. I totally agree with with you. If you want to know what is coming, I can tell you up to 2 days ahead of time, just by the way I feel
Wordscapes is also fun challenging and ongoing
i'll check it out.
I have an advantage over most MSers because I literally grew up with it but didn't know what was wrong. I had no choice but to adapt as I went along, so it's just second nature for me now to deal with the random issues that pop up. I'm not sure how I'd cope if I was merrily living my life and suddenly zapped with unexpected problems. I admire all of you who have!
And weather changes kill me! I think that's why I slept all day today and am achy all over. We were sitting outside 2 days ago, and today there's an inch of snow on the ground.
hey NorasMom We have a lot in common. I grew up with it. My mom, sister and Aunt had it. I just thought for some odd reason mine would not be severe. I was still doing martial arts at the time. The doc when i was diagnosed said I had a benign case. REally?
benign case? WTF does that even mean? LOL
I know.
I was thinking the same thing
they shouldn't promise. My symptoms were invisible for the first few years and although i had to leave my full time job i didn't expect to get worse...until i did. Where is that doctor now? I want to give her a piece of my mind. LOL
My neuro used that word once, benign. Said that my ms had been benign for many years, until it wasn't.
Thank you! what were they thinking? I think they don't know how deeply that can affect a person. Better to say I don't know. Did I want to be told i'd be using a walker in the future? No. There really isn't an answer when a person is diagnosed. Drs. just don't like to say I don't know. Ok rant over.
Adapt and maintain hope π
I have learned to do what I can on days I canβt I donβt. Just trying to embrace where God has me and knowing it could always be worse. Thanking God in advance for keeping me on days that was challenging. Also using the Serenity prayer and praying daily with keeping a positive mindsetππΎ
Yeah, like everyone else is saying.. accept it but fight like hell before hand. The hardest thing I have ever had to do is accept my own limitations. The refusal to do so will usually get me hurt. That is not to say I just blindly go into the night. I fight having to use a can then crutches, now a walker, but in the end when I was falling or dropping stuff trying to walk and balance things with one hand or even work (making jewelry) and failing miserably because of tremor and leg weakness, I had to accept what I already knew. I needed help to walk and without falling and needed something more steady than my hands to carry something from the kitchen to my table without spilling or dropping. Its frustrating and infuriating at times to not be able to do things we have always done but such is the nature of this beast, unfortunately. Sometimes we can use PT or whatever to try to stave it off a little longer, which is great! Sometimes that helps. I have found it doesn;t always help but I always try. I read a medical research paper recently that said DMTs actually only delay progression by a few years. When I read that I started thinking about what the point was then? I mean all the worry, the side effects the other BS.. what is the point of all of that if they will only delay progression and disability by a few years? IDK.. Maybe its just me but I fight what is happening and when I can no longer fight I accept.. I don't know what else to do
thank you wolfmom21fl for sharing your experience. After the first 8 years, copaxone stopped working. I started to have trouble walking, remembering things. Switched to Aubagio and Ampyra for the last 3-4 years. I keep fighting to keep my independence. Acceptance is the last resort. But there are definitely things I must accept. Every day my intention is to be strong and healthy. i accept 100%, that i will never be pre-MS or have the body I had 12 years ago. I accept to some degree that my disease is progressing despite my best efforts.
Talk to your neurologist find a DMT that doesn't have so many side effects
What you see, it is not me?!
Stair lift
Coping with relaps
What is your favorite saying?
What is your nightly routine
