Experiences with exercise?

I’ve posted a couple of times about a study from Sheffield Hallam University, showing benefits to people with MS from vigorous exercise (which turned out to mean walking or going on a bike). I’ve been using a cross-trainer for a couple of months. I started off doing 12 minutes about 4 times a week. I felt much less tired than normal after only a week and started going on every day and gradually worked up to 24 minutes a day.

I’ve had some bad days over the last couple of weeks: fell and cut my head; felt bad running up to my tysabri infusion and then grim for the usual four days afterwards. I haven’t been able to do more than 20 minutes (some days only 15). I managed 24 again yesterday and today. My aim is to do 30 minutes a day.

Does anyone else have experience of trying to exercise every day or several days a week? Have you been able to keep it up? Have you seen improvements in your physical state or is a slowing of deterioration the best to be hoped for?

I need two sticks to walk 25 metres and can’t go any further than this but I’m interested in hearing about any experiences people have of this, whether it’s running or exercising in a chair.

Hi I’d be equally interested to hear other experiences with exercise?! I’ve been trying to loose weight since January, have managed a loss of 17lbs but have stayed the same now for a few weeks and can’t seem to shed anymore. I feel very limited to what exercise I can do, I can walk/stand for about 10min before my legs give up and I have to rest for at least an hr before being able to attempt anything else. I borrowed an exercise bike, I found the seat very uncomfortable and would stick a cushion on it to help, but anyway pushing myself I could do up to 10min on it but then I really struggle to get off as I’m unable to lift my legs up and over! I’m thinking about investing in a rowing machine, I wondered if that might help with loosing weight and if I’d be able to do more on that than the exercise bike?! Liana

Hi

I have the annoying problem in that repetative movements cause me to lose power. I was a competative swimmer, loved hill walking and cycled most days. Now I am a happy camper is I can manage 2 minutes per day on the rowing machine.

You have to cut your cloth to fit - meaning that you may find that 10 minutes per day is what you have to stick to for a while and if you do move up in time that you lessen the resistance to compensate. Do not allow staff at a gym to treat you like a normal human, you are no longer that person. Once you accept this you will be surprised at how much you can manage without a kick back.

Listen to your body (I know we all fail now and then), only you know what it will allow you to do. Each person is different and what works for one may not for another, besides, relapses occur without our permision at any time of night or day so we are not to blame.

Make allowance when having treatments and stop being so hard on yourself.

Take care

Moira

Hi.

Mmmm. Tricky question.

I go to my running club on Tuesdays and Thursdays. Each session comprises an off road/ road run of 7- 8 miles at 8 min/mile pace. I live near Dartmoor, so the course is always hilly. When we return to the track, we continue straight onto the running track and complete another 4 laps of the track at pace. I always feel ‘buzzing’ after those sessions!

On Sundays, we run between 10-15 miles, mostly off road.

On Saturdays, I try to complete at least a 6 mile run on my own.

Last Wednesday morning, a friend and I completed a hilly 11 mile run, but we completed it at 10 min/ mile pace, so it was leisurely. My friend is 67 years old, but she’s an awesome older lady runner!

So, I run at least 5x each week. When I’m not running, I use weights regularly.

Personally, I have always exercised and have been running since I was 13 years old. I cannot and do not want to imagine my life without my training/ running.

Unfortunately, since my first major relapse in June 2013, exercise is much harder on my body. I now suffer Secondary Dystonia when I’m tired or fatigued. The ‘episodes’ are fairly brief, thankfully, but I may have several ‘moments’ in close sucession.

I don’t want to imagine what I would be like now, had I not been so fit. I DO KNOW that I am now working harder than ever. Those damned wolves can continue knocking at the door, but they will not get in!

I’ve actually had RRMS since 1995, so I guess I must be doing something right. It can only help, can’t it?

Best wishes

Tracyann x

Hi Sewing chick do you suffer from spasticity, if not or its mild leg muscles will respond much quicker to exercise.

Get a friend to give you help and stand with you seeing as you can only walk 25m try a exercise bike with n resistance for a while
allowing legs to get use to motion and build up stamina

You could also do 2 mins only on cross trainer as thats more of a sliding oval motion with legs, and will work upper body
just get someone to stand near you incase you lose balance.

Rowing machine is great for legs and core muscles.

If you do have spasticity you can do rowing machine but get one of the long car bungle (rubber band) things you use on roof racks
and wrap it around seating track so you don’t go all the way back on it and legs stay bent when your pulling right back on it.
this will stop legs locking out straight and help you slide forwards again.

You can also use machine called leg press and again don’t lock your legs on it, when legs are stonger do this also on tip toes then go flat on feet and tip toe, great for helping with foot drop

I go to the gym usually twice a week and have done for a couple of years. It’s interesting to look back to how I was when I started but there’s been definite improvement in dropped foot, stamina and leg strength. I still can’t walk very far and that won’t ever change but the walking I can do is stronger and I feel sort of safer, if that makes sense.

I use an exercise bike and rowing machine mainly, and have just started on a cross trainer but it’s really hard work!! I shall persevere though.

I don’t always exercise for the same length of time but I feel that any amount must be better that nothing. Wish I’d started years ago!

Val

Ah these are what I’m on about

So you wrap these just behind her seat on the long metal bit but with you legs must be a little bit bent so the seat stops you doing totally straight

Quick start guide to rowing machines

go swimming on most days, minimum 20 length, but the more the better and always cycle everywhere…- have done this for most of my adult life. The current attack of ON not helpful for cycling (did go over red light +was stopped by the police and of course you can’t mention Ms)

I try to do 15 mins on the indoor ski-er about 3 times a week. It leaves me tired for the rest of the day, but I reckon it’s worth it because I need some cardio exercise and would get none otherwise because my legs don’t work too well for walking. But it is always a trade off between energy depletion and getting a healthy amount of exercise. I think it is a matter of trial and error to find the best balance for you.

Alison

I am going to try going back to the gym this morning, you lot have given me inspiration. I don’t think I will be running 5k on the treadmill yet though like I was before. I think thats put me off going when I compare how little I can do now to what I used to do. Will start off on the cross trainer (you can hold on) and see how we go. The rower makes me nauseus for some reason!

This really resonates with me - I have sometimes fallen into the trap that this way of thinking opens up for us. But it is a trap: recognising that is half the battle.

Enjoy your trip to the gym.

Alison

Hi

I just wanted to put in a word for those whose abilities are a little more limited.

I can ony do 5 minutes on the recumbent bike, which takes me a distance of about 400 m. My legs won’t cooperate to do anything more strenuous.

However I also do 20 minutes on the hand bike and various weight exercises.

I first went to the local gym on the GP referral scheme. The staff at the gym have been brilliant and really try to help me.

It is really important to do whatever exercise you can. There are lots of opportunities out there and something for everyone. I believe our local town also has a disabled swimming club.

Anne

Well i did go, I did 12 minutes on the cross trainer, I was going to to do some walking on the treadmill but the gym was overtaken but a bunch of kids on a visit lol. Probably better to start off with small steps. The cross trainer was good as I felt balanced and the dizziness went whilst I was moving.

l have struggled to keep mobile for 32 years of MS. For the last two years l have been unable to walk without the support of a rollator- and even then only a few steps. Whilst trying to keep ‘going’ - l have caused wear and tear to what was my good leg. l now have a replacement hip and knee - but still finding it difficult to get about. Joints are working well - but the muscles have suffered trauma and are very tight and painful. l am having physio - and doing exercises all the time trying to stretch the muscles and ligaments. l have always used exercise machines - at home - cross-trainer/healthrider and a powerplate machine. l can do about 25mins a day using the trainers. l can just about get on and off - and they hold me a safe and well balanced position. And away l go looking as if l had no trouble at all with my legs. Rowing machine is out of the question - as l can’t get up and down to get on it. And as yet - a exercise bike is too much for my new knee. Prefer the other trainers l use - as they work out the whole body - and l can turn the pressure up to make it harder to push.

l can do pilates type exercises whilst lying on my bed - and also sitting on a Gym Ball - these all help with ‘core strength’. When l am in bed reading - l bend my knees right up and place the soles of my feet together - then try gradually relaxing my knees down so that they are nearly touching the bed. lt did not take many days before l managed to really get the knees to open - this helps the abductor muscles - helping with core strength - pelvis and lower back. Also helps stretch the muscles going down the thigh to back of knee and down the calf. Lying on your side - and slowly raising the top leg - holding the position a few seconds before slowly lowering down.

lts 8weeks since my knee replacement - and l managed to keep up with everyone else in the ‘knee class’ - lt is very painful - as expected- but l am determined to get some mobility back. Sitting down doing nothing will not improve anything. l find the pain drives me on to doing more - as that pain is there because the muscles are trying to fire and do their work.

l have not given up the idea of getting back to riding my horse - and l love to dance. So l shall battle on. Nothing comes easy - does it.

Moira, please can I aksk what rowing machine you have (or anyone else who has one), thinking about getting one,

Sorry to butt in here!, have asked before but got no replies

Think I got the wrong name there! sewingchick Original poster I mean but whoeverf can answer for me really

I used to be a dance teacher before I was diagnosed and exercised every day in some form, including sessions at the gym.

Since I’ve been diagnosed with MS I haven’t been able to exercise or dance as my limbs get too fatigued and I get a pain in my back. I’ve obviously had to change my job to continue working. I’d love to be able to exercise again so if there’s any good advice that comes out of it I would follow it.

I used to be a dance teacher before I was diagnosed and exercised every day in some form, including sessions at the gym.

Since I’ve been diagnosed with MS I haven’t been able to exercise or dance as my limbs get too fatigued and I get a pain in my back. I’ve obviously had to change my job to continue working. I’d love to be able to exercise again so if there’s any good advice that comes out of it I would follow it.

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