Any suggestions to keep walking?

[MSbeGone]

Hello Everyone 👋, any suggestions to my legs working. I walk short distances with a walker, however, now my legs feel as though I have 2 bricks on each one. Take care you guys 😘

[Jesmcd2 CommunityAmbassador]

Hi MSbeGone you can ask your dr if this is right for you...ampyra.com/walking-and-ms/p...

I dont know much about it but lm sure others do🙂🤗💕🌠

[MSbeGone in reply to Jesmcd2]

Thank you, I take ampyra. I do see a difference when I don’t take it however, the help of it is not great for me

[Helpmeup]

I use a rollator to get around. I have days where my legs can hold me up for short periods of time, and days where my legs feel like they are stuck in cement. On the days where I just can't walk around, I try to do some gentle leg stretches either sitting on the floor or in a chair to keep the muscles working. I have learned to listen to my body. If my legs tell me they are just too weak, I rest. If I can, I will try to do even ten minutes of seated leg stretches. Every bit helps! I have a thick memory foam pillow that I throw on the floor and sit on to do my stretching comfortably. Just try to keep moving, either standing or sitting, and if your legs just refuse to cooperate, give them a rest. Good luck!

[MSbeGone in reply to Helpmeup]

Thank you

[Raingrrl]

Check out Dr. Gretchen Hawley’s videos on YouTube. She is a doctor of physical therapy that is certified in P.T. for M.S. patients. This is her specialty and life’s work. She breaks down movements into very specific pieces as exercises to maintain function and improve through the use of neuroplasticity. She recently came out with a book describing her techniques along with specific exercises. I use her techniques plus yoga to maintain my flexibility, strength and improve my balance.

[MSbeGone in reply to Raingrrl]

Thank you

[Jesmcd2 CommunityAmbassador]

Have you talked to your Dr about this🤔 Make sure its not a medical situation... l should have said that before😔 We Cant Take The Place Of Your Dr!

[irhunter]

I’m not a doctor so take this with that grain of salt. Take another grain of salt because we are all different, you know that drill!

When I was given a preliminary Dx of MS in Dec of 22, I was living on the internet, learning and reading as much as I could on MS clinical studies. At the time I was also failing fast, with multiple falls a day and using a walking stick. So, I started Omega 3 at 2000 mg a day. Vitamin D, 5000 IU every other day. Alpha Lipoic Acid, 600 mg a day.

By March 2023 , I received a Dx of SPMS from my MS Specialist. She started me on Mayzent…. Didn’t actual start until May. I also learned from my Dec 2023 MRI that I did not have active lesions, only scars from past activity. So, I learned about PIRA, progression independent of relapsing activity. I asked my MS specialist about Clemastine. She said, at that time, that there was too little evidence of remyelinization with it and would not prescribe it. I needed two walking sticks to walk at that time. Legs seemed two heavy to lift!

Well, results from the ReBuild Clinical Trials were posted in May 8th PNAS. While this trail focused more on how to detect remyelinization with the MRI, they used Clemastine. So, off to my GP, explained that, showed him clinical study. He agreed to prescribe Clemastine, on label for my allergies. Started that in August.

All that reading to get to NOW. Friends and my love have commented on how I’m walking better. I’m up to about an hour of walking, in the morning, without using walking sticks. I carry one, just in case. I get by with one stick for steadiness for most the day. By evening feeding, I usually still need two and walk slower. I still run my ranch. I’m feeding chickens, pigs and sheep twice a day. Horse, working dogs, barn cats all need to be fed also. ‘Ranching’ has to be done and I’m doing it better this year NOW than I was this time last year.

Also, from a friend PT, it was suggested I try not to rely on furniture and walls for support walking in the house. So, remember playing ‘the floor is lava’ as kids? Now my furniture and walls are ‘lava’. I only touch to prevent falls. I wobble a lot… might see some drunken ‘Jack Sparrow’ walk! Lol Drunken walk in the house for the last month. I’m improving.

So we are all different but if anything helps, regardless of FDA approval and it does no harm, then I’ll try it!

[MSbeGone]

I am so happy that you are improving. Finding something that works for us and if needed have a doctor prescribe, it is difficult. However, may your walking get better and better.