Last reply 3 weeks ago
Exercise with MS? What you doin?

I started with a new PT this month and am enjoying the combination of balance and strength exercises he has me doing. He encourages me to do all I can when I share the different things I do. He has more Neuro training than the typical PT and I even see a PhD attached to his name so trust he has plenty of training.

There is another guy with posts that keeps popping up on my FB feed so I clicked on the link to see where it would go. Apparently his mom had MS and he was pretty oblivious to that when he was growing up and didn’t realize that he could have done something to help in her progression. As a result he has now pulled together some recommendations- has anyone else gone down this rabbit hole? https://dt-training.co.uk/useful-resources/?fbclid=IwAR0jM5DSoKcri_ajYN0I6VTo2DQDLG8cVPftjT3SwVd9UmWr_6Zs77K83xI

Still waiting for the promised yoga poses that Seb is putting together. He is a yoga trainer with MS and a great set of youtube videos I have found helpful https://www.youtube.com/playlist?list=PL6ER_vJj2m6LvGc6UsWB1pehBPNtEiaTA

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kaijurising
3 months ago

@itsmewithms – thanks for the recommendation. I haven’t looked at his stuff yet although I’ve seen it around. I just signed up for 3 months with MSWorkouts.com to see what I think of their product. Strength programs for standing and sitting as well as stretches and symptom specific exercises. (I didn’t link to them because I’m not sure if there are any rules here since they are a commercial entity.) You can get a week for free if you want to learn more. I haven’t done it long enough to say whether or not I would recommend it, but will be happy to report back once I am consistent.

I see my neurologist in 2 weeks and am going to ask for a PT referral so I can have someone to work with in person. My right leg is my primary problem (so tight) but just last night my right forearm also became tight, and I have a knot that feels like a golf ball just below my elbow crease. Ouch!


itsmewithms
3 months ago

Excellent! let us know how it goes. I had a PT order for my hip replacement recovery and she focused strictly on strength and issues related to the hip replacement. She did not recognize spastacity symptoms and other Neuro types of issues.

Now I have a PT order from my Neuro and have shifted to a place closer to home. He is working on Strength and Balance combined so I think this will be better for me. He is very willing to incorporate things I pick up and learn so thought I’d check out these videos. At this point I don’t see any charge for them so am willing to pick up what I get for free and run it past my PT guy-

I am skeptical of anyone that has a “MS program” because everyone’s symptoms are unique.
Many MS folks have “balance” issues while others are impacted more in speech, vision or bladder. I think each of the symptoms can be broken down and what can be done to manage that symptom but not some catch-all program for everyone with MS.


itsmewithms
3 weeks ago

@kaijurising How’s it going with the workouts? I wanted to let you know that Seb finally posted up a yoga workout on his site. Was more than a half hour and I’m sure he would shudder to see me work through it ;-0 but it is good for me https://www.youtube.com/watch?v=lsHgIws6BVs&list=PL6ER_vJj2m6ICmyDsyzspXgNDd7uwkGRy

And there is this Trevor guy that put out a 7 day workout around New Years that I went through with notes and run through much of that each night.

I have to wait until my deductible is met to resume PT…I’m sure my next Ocrevus infusion in early April will more than meet my annual ;-0 and there should be co-pay assist to help cover my share and after that medical is free for the year.

To get me through the time I’ll work with what my PT guy left me with and these free sites and I’ll check out your recommended MSworkouts

I have found spastacity to be more of an issue for me, especially in the afternoon and have a nice little mini massage roller that helps as well as a warm rice bag. Just getting through the winter 😉


ray_thomas
3 weeks ago

I consider myself very lucky indeed. I have MS and now on Ocrevus, and other than my eyes causing me problems , and the tingling in my hands and feet, I’m kind of OK
Ran 4 half marathons last year ( Including all the training too !) and have 2 planned so far this year ( London landmarks and Helsinki half ) , I ran the Edinburgh half last year 2weeks after a relapse ( Vertigo ) and ran it with a eye patch in my pocket and my husband by my side – but I did it in 2 hours 24 Mins ( Raising 1,500 for mac Millan nurses ) The fund raising was an added incentive – but my point in all of this is that I don’t want to run, but when I have finished I feel so Good !!!

So for me exercise – s long as I can, is part of my treatment

Rya


itsmewithms
3 weeks ago

Wow- good for you! I had a hip replacement a couple of years ago and one of the rules was no running on concusive surfaces and I assured them that I was fine with that ;-0 I don’t think my balance would allow for that but am on my stationary bike every day…and of course the on-line stuff I see from MS Gym and Seb.

Keep it up 😉 I think the MS Gym would crack you up as the entire first week of intro courses is all delivered from a “wheelie” and his goal is to get us up and walking again ;-0 I told him that he is kind of missing the boat with a lot of us!

Good luck in your plans this year! I hope to do some of the planned vacations and get back riding horse this summer-


kaijurising
3 weeks ago

hey @itsmewithms, thanks for thinking of me. I am riding a stationary bike at least 5 times a week for 30-45 minutes. I finally started doing some of the exercises in the MSWorkouts program. They emphasize slow, controlled movements which is a good start.

I am riding the bike before work because I know I won’t do it later in the day. But, since I have relegated other fitness stuff to the evening, I find I am not doing it. So working on my mindset around it. Like, maybe do half the work out if I can’t do all of it. Still working it out in my head.

I live in the US and have Amazon prime. There are a lot of yoga videos by Adrienne, some of them only 15 minutes long so I am working to incorporate that before bed. (She has an adorable cattle dog that is often with her, added incentive to watch.) I’ll check out the Seb video, as I know you’ve mentioned him before.


itsmewithms
3 weeks ago

I’m resisting Amazon Prime as I feel companies should treat all customers well and not just those that pay them to treat you the way they should…but I do wish I had some of the perks 😉 but on principal I can’t do it…it seems like a lot of companies are stepping forward to pick up this business and are offering free shipping and better service to win you over.

If I just search her on YouTube there is a 30 day invitation out there so I will check that out. I actually get so many ideas and videos for free I can’t possibly fit them all in! ;-0 and I’d have a very scattered approach to my PT.

My last PT guy said I should try anything that doesn’t hurt that is towards balance, flexibility and movement. The gal before that said my body was basically “too loose” and flexible and discouraged stretching in favor of strengthening the glutes. She encouraged me to try controlled movements like Tai Chi instead…I like to watch Tai Chi but have never been pulled towards that style of workout but did like Karate when I was in it during College (before my ankle went all to heck and I had to have an accessorary navicular removed…part of why my right foot is so messed up is I was left with basically no arch over time)…I do like the stretching and flexibility of Yoga.

That PT gal totally missed the early signs of spastacity an spasms…was supposed to have neuro training and I had reminded her many times of my MS…just strange. Current guy has a PhD in Physio with most of his extra training in neuro training so he gets referred all the cases with these complications and therefore gets even more experience in it. Once I meat my annual deductible again I’ll set up appointments with him again…until then I am filling in with what I find and what feels good for an hour a day. I find that after 5 minutes on the bike my legs just want to be done. I set the goal to hit my target distance with a set resistance to make sure I do at least the same as the day before and a bit more…and once warmed up go into the squats (with a 8 lb weight ball on a squishy workout foam) and some of the resistance band ideas he left me with. I also got a balance ball stabilizer for Christmas with resistance bands and there is a set of moves I can do with that…pretty quickly an hour is gone! just put a show on the TV in the corner and I am good 😉

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