Hi, I was diagnosed with MS in 1985. The first 29 years were pretty manageable. I could walk fine. Then, things got worse and I needed a cane, then a walker/rollator. Now, I can barely walk at all and I'm scared. What should I do? Thanks for reading, Linda
Hi Linda, There was a time when I would walk three steps and freeze, unable to move, could just barely hold myself up. The disability and discomfort was enormous. I did not get scared, I began to make a plan. Being afraid only tenses the muscles more, being afraid stops the brain from functioning/problem solving. Once I began to plan for the inevitable and making descisions about what to do, my muscles began to relax, and my well being improved.
So now, like you I have spms, I can walk but am losing the use of my hands and arms, finding it difficult to do anything with my hands and arms. I started taking caps of hemp oil more than a month ago, maybe two months. No, it is not a miracle cure, it has just extended my ability slightly. I am doing more and suffering less. I vacuumed the rugs yester and made a couple of beds and today from my elbows to my fingertips it feels like i have lobster claws.
I dont walk alot, i sit alot or lie flat on my back because holding myself up takes much energy.
Over the past 50 years there have been plenty of glitches, either I couldnt pee and needed a catheter, or I was peeing all the time and needed ditropan. Or, I was bouncing off the walls, dropping everything, forgetting things, didnt know where i was, didnt know what side of the street i was supposed to be driving on, couldnt sleep because of spasms, couldnt swallow, couldnt breathe, couldnt eat and on and on.
Once I began to plan for the worst, like forever using a catheter, it went away, like I can see through both eyes now with glasses.
i am not making light of the issue, I am saying it is my experience that when I relax about what may be the worst case scenario my brain changes things. Yes, I still talk to my brain and tell it to fix things, and yes, ms only goes in one direction and we delay the inevitable as long as possible.
When I was planning for a motorized chair I got intense about investigating what the choices were and how to pay for it, and how to modify the home for the chair or consider moving, I went through the whole thing.
It may sound tooo simplistic, relax, but I feel strongly that the more tension the more difficult it is for the nerves to function accurately. Like now it is the holidays, are you less able and more tense, are you feeling worse, less able than when nothing was expected from you.
Maybe you will ahve to move around in a chair, someone in our neigfhborhood has a long pole with a flag atop it and he rides on the highway the ten miles to town in his chair. I dont know this person, now why he is in a chair, I just know he is taking responsibility for demanding his right to move on the road, along with the car and trucks. I am not saying I could do that, my depth perception is all off, that hasnt changed much, yet!
Consider all the stuff that has gotten better since you were first diagnosed, ther have been changes for the better? Why should that change? I heard the quote that worry was/is the misuse of imagination. Think the best, trust your brain to fix it, trust you will have a better day, and perhaps you will.
i am not healthy, but after 50 years of ms, I quit the betaseron I was on for 25 years and am enjoying my brain, the me I use to know, sometimes I even think clearly.
If the techfidera is not working and you want to be on a dmd think about ocrevus it is for spms.
As long as i am not in pain, or that the pain is manageable i dont want to take any more drugs than the stuff for my thyroid. I take supplements, besides the hemp oil, tumeric, e, d, b, probiotics, alpha lipoic acid, and c.
And be good to yourself. maria
Thank you, Maria, for your kind words. I think I was in a bit of a panic yesterday when I wrote that post. I am calmer and more relaxed this morning. You're s right, I have to start thinking about what I may need, and start planning for what may or my not be in my future. I am not going to be scared. I will talk to my doctor about ocrevus, and as for today, I'm going to order some hemp oil. Thank you again for all of your good advice! Linda
I'm sorry you're feeling scared- MS is so unpredictable and of course that is scary. You're not alone in this. Definitely share your concerns with your doctor and lean on your support system. If you're considering mobility equipment, we do have this booklet that goes over different helpful devices: How to Choose the Mobility Device that is Right for You
Thank you for your advice, Jess. I will talk to my docor in January and read up on mobility devices. Your input means a lot to me. Linda
So first you should see your neurologist. See what he says. Are you on a medication for the MS? Do you have RRMS? Maybe your just having a exacerbation. You should also look into physical therapy maybe they can help build your strength so you are more moble. Of course all this can be figured out with your neurologist. I'm sorry you are scared. When I had issues walking I too was terrified of course at the age of 22-24 I'm not supposed to have issues walking. Not only did it terrify me but it didn't help my mood and depression. Good luck! Gabrielle
Hi Gabrielle, thank you for responding. I will talk to my doctor when I see her next month. Yes, I agree about physical therapy. I've had it before and it helped more than anything with my strength. I still do some of the exercises at home, but maybe not a much as I should. I have to work harder, and I will. Thank you for understanding!! Linda
Wow, it is wonderful to hear the transition, overnight! It is great to hear the rapid transition. You have shared much letting us see how letting go sets us free. thank you, Linda.
Maria, thank you for all your insight (not just on this, but on a thousand other issues)!! Linda
linda, you are welcome. maria