Staying active with MS - chatroom transcript
15 March 2004, 10am - 7pm
Experts present:
| Name of expert | Occupation | Present between |
|---|---|---|
| Jo Kileff | Physiotherapist | 10am-2.30pm |
| Gail Townsend | Occupational therapist | 1.30pm-5pm |
Simon - MS Trust
Hello Tim, do you have a question for Jo or a comment to make about staying active with MS?
Tim
I am very interested in the expert's opinions on exercise such as going to gym and especially pilates
Jo - Physio
Hello Tim. Exercise seems to be very beneficial for people with MS but what exercise you do can be dependant on your physical problems
Tim
I usually go to gym three Times a week then group physio once a week and have been doing pilates once a week for ten weeks. I am what they call at our local centre walking wounded and have primary progressive MS
Simon - MS Trust
Hello Sam
Sam
Hi. This is my first time in a chat - can I ask anything about physio?
Simon - MS Trust
Sam, feel free to ask
Tim
I am trying to start a pilates class just for MSers I have found instructor I just need to get others to join and them to see benefits
Simon - MS Trust
How has pilates helped you, Tim?
Tim
I found it difficult and still do but it makes you more aware of posture and balan ce and helps core stability
Sam
Is pilates good for people with MS? I heard some rumours that doubt it. Is there a way to do pilates at home?
Jo - Physio
Pilates looks at the small muscles that stabilise the centre of the body and so it is very beneficial if you have enough movement to do the exercises. If you have problems with balance, mobility, it can help to stabilise your middle. Even if you don't have specific problems at this stage, it certainly does help core stability - having a specific instructor aware of problems such as coordination of limbs and fatigue would also make a pilates class even more useful for an individual with MS
Tim
That is what I believe. Since being diagnosed two years ago, I have tried to stick to exercise and that in turn helps fight effects that MS has on muscles, if that makes sense. Pilates was recommended by physio at hospital a while ago so when class started locally I tried it
Simon - MS Trust
Tim, whereabouts in the country are you? Would you like us to include your email address in the transcript so interested people can get in touch?
Tim
Yes you can do. I'm in Poole in Dorset. My email is Tim.worner@ntlworld.com
Jo - Physio
I think there are increasing numbers of classes - they are well worth doing. As for your gym sessions, Tim, there is increasing evidence that this helps keep your heart, lungs and muscles strong
Simon - MS Trust
Hello Kimiko. Do you have a question for Jo or a comment about any activities you do or would like to do?
kimiko
I've been seeing a neuro-physio and she's given me some exercises for balance which are great. She's told me to start pilates which I will be doing next week
Jo - Physio
Great - we were just discussing how pilates is also good for balance problems so hopefully you will find that useful too
Tim
Some my friends do yoga but that does not seem to deal with the issues of balance and posture so well
Jo - Physio
Yoga can also be of benefit for people with MS but more for issues of tight, short muscles as it looks at flexibility and suppleness. I think posture may also benefit from yoga, but I have to admit, I know less about yoga than pilates
kimiko
I must admit my balance is awful so I'm willing to try anything. I find the gym ball has helped a bit
Jo - Physio
A gym ball has all sorts of uses, one of which is balance. With all of these things, it is finding a programme of activity to suit your symptoms
Simon - MS Trust
Sam, your profile says carer. Do you find exercise or activity helps the person you help?
Sam
I help my partner to do small exercises that make a difference, but we're trying to find ways to make it fun. Do you have any ideas?
Jo - Physio
What sorts of problems does your partner have - how active is he?
Sam
He uses sticks mostly and sometimes gets a bit stiff - which is the main reason we try to do the exercises.
Jo - Physio
Sam, stretching exercises can be good to stop the muscles getting any stiffer. Has he tried any more active exercise, like cycling?
Sam
Are there any exercises you recommend for stiffness?
Jo - Physio
The important thing with stretches is to keep each of the joints moving through their full range. So hugging your knees into your chest, rolling your legs side to side. It does depend a bit on which specific muscles are stiff. Has he seen a physio?
Sam
Are there any exercise programmes that we could do as a couple?
Jo - Physio
When picking exercise for yourself or for a partner, you can try any of them and if they are beneficial great and if you get any negative effects, then try another. You could attend a gym together - is that something you have considered? Or walking?
Sam
We like walking - our dog helps us to do that!!
Jo - Physio
And walking is good. The important thing with exercise is to do it regularly so that the muscles don't get unused and so that you don't get unfit
Tim
What I am looking to do is set up pilates class after Easter just for MSers and hopefully our local Society will support it as for some it can be quite expensive
Simon - MS Trust
Tim, the Bedford Therapy Centre is producing a video on pilates and MS. It should be available from the end of this month. They say that many of the people who come to the Centre weren't able to get their on a regular basis for pilates classes, hence the video. It will cost £9.99. You can contact the Therapy Centre at info@MS-selfhelp.org
Tim
Great I'll be interested in seeing that as pilates so much of the movements are similar to physio exercises
Jo - Physio
It also means that it will have taken into account some of the specific problems that people with MS have so should be more user friendly
Tim
Yes, the group I attend is all older people except for myself and I am the only man and the two friends who also have MS go as well are younger
Simon - MS Trust
The MS Trust is also producing a book of exercises for people with MS. This is free and should be available soon (watch the website for info)
Simon - MS Trust
There was a report recently about tai chi and MS. Has anyone tried that? Any thoughts, Jo?
Jo - Physio
There is some research suggesting tai chi can be beneficial. I don't have any personal experience but it is another option. I think exercise is about finding a way that you like and can do regularly - then you are more likely to persevere and get the benefits
Simon - MS Trust
Hi Alex. Do you have a comment on activities or a question for Jo?
Alex
How do I get physio in Derbyshire ?
Jo - Physio
I don't specifically know the referral system in Derbyshire, but your GP is probably a good way. If you go to your GP, Alex, it is worth thinking beforehand what you want to work on with a physio - walking, fitness, balance
Alex
Bye all. Will ask GP
Simon - MS Trust
Hello George. We've been talking about pilates and exercises for people with MS. Do you have any thoughts?
George
My problem is that I tend to find exercises a bit dull. It's too easy to stop doing them
Jo - Physio
That is a common problem George. I was just saying, that finding something you enjoy is half the battle - then you are more likely to stick to it
George
That's true. I used to play football before I was diagnosed - hated training but loved the game
Jo - Physio
And are you unable to play now because of your symptoms?
George
I get bad fatigue and can't really run anymore. Legs get weak quickly
Jo - Physio
Fatigue is a problem affecting how much people exercise. However, unless it is really overriding fatigue, exercise may actually help
George
I think I'm naturally lazy and the MS has played right into that instinct :-)
Jo - Physio
George, if you started going to a gym, walking, doing something, you may feel more lively and stronger. It is a bit of a vicious cycle of inactivity
George
I do like walking. Disguising the exercise in something else seems to work with me
Heather
Yes, walking and swimming have been a tremendous help to myself. I would recommend as much as the person with MS is able to do. I walk to work each day
Jo - Physio
For sure - even just walking to the local shops to get a paper or some milk will reap some benefits
Simon - MS Trust
Heather, do you do swimming as a class or do you just go along to the pool?
Heather
Simon, I am fairly fit and I do not go to a class, but swim at my local pool. Most local pools do run sessions for disabled though
George
I read somewhere that when someone without MS goes to the pool it's called swimming. If you have MS they call it aquatherapy :-)
Heather
George, I have found that inactivity makes me feel much worse, and therefore I try to do AS MUCH exercise as I am able each day
George
It's true, I do tend to suffer for my lazy days
Jo - Physio
I think lots of people with MS are afraid of exercise because they think it will make them worse. In actual fact, all the research seems to suggest that it'll make you certainly if not better, then no worse. Many actually see improvements
Heather
Despite being told to 'take it easy' by people after diagnosis, I have managed to improve my stamina considerably by walking and swimming regularly
Jo - Physio
Take it easy is a very old school method of management that some doctors still say - activity is definitely important. The other thing to remember is that after exercising, muscle soreness is not uncommon for people with or without MS. So don't worry about that, as long as it only lasts a day or two
Simon - MS Trust
We've been talking about exercises and activities followed by people with MS. Do you do any?
Ellie
Are you familiar with the Terms scheme?
Jo - Physio
I am not sure what you mean - tell me what terms is
Ellie
Terms is run by our local Primary Health Care and Leisure Services
Jo - Physio
I think it must be a local scheme - I haven't heard of it, but is it encouraging you to exercise at your local leisure centre?
Ellie
I was assessed and do aquafit. You have to do two sessions a week for ten weeks. I think it must be a local thing, Jo, but the best is that the aquafit sessions are run by two neurophysios
Jo - Physio
Ah, it is running around the country, just called different things. It is to encourage people to exercise and supported in slightly smaller groups within centres
George
What's aquafit? Exercising in water? Not heard of that one
Ellie
It is like either circuit training or a work out, in water. You can so much more than you can on dry land. I can run in water and jog. I fall flat on my face on dry land
Jo - Physio
George, Aquafit is aqua aerobics - exercise in water. A good way of exercising if you struggle on land, or if you are fond of the water
Ellie
I really enjoy it. Every one in my class is a medical referral but we really work hard. I carried on after the Terms ten weeks. Also go to the gym once a week - a feeble programme for me but I try
Jo - Physio
Ellie, That isn't feeble at all
Heather
Have you talked about yoga? I definitely found this was brilliant for regaining my balance after an attack, and improved muscle strength
Jo - Physio
That is interesting to hear, Heather. I am not an expert in yoga, but we did discuss its benefits for flexibility. Interesting that it helped balance too
Heather
It's not only the balance and muscle strength which benefits from yoga, but also the relaxational benefits
Ellie
I find that some yoga postures help balance. We do some in the water
Jo - Physio
Ellie, I am a strong believer in doing as much as you can
Ellie
Has anyone done Pilates
Jo - Physio
Over to you Tim !
Tim
Yes I do
Ellie
Is it good Tim ?
Tim
I find it very good for balance and posture as my walking is c**p
Jo - Physio
Pilates is good for what we call your core stability, which is the muscles in the middle of your body, and so good for balance and all other everyday activities
Ellie
Yes, we do core stability in the water, that is why I wanted to try Pilates. I have put my name down for it at the Leisure Centre, but there is a waiting list
Tim
It also makes you very aware daily of your posture as you can practise the principles throughout the day. It's about how you move not about how far and breathing at the right time
Ellie
When I first tried it, I was really in relapse badly, and I couldn't breath at the same time!
Tim
No after ten weeks of it I still struggle as my coordination has always been bad but each week it seems to make more sense. It's no good doing it for a short period
Ellie
I agree. I had a trainer come to the house when I was really bad, but I gave up. I was just not fit enough to cope. My daughter does it and she said you just have to try again later
Jamie
Can you do too much exercise?
Jo - Physio
Jamie, for someone with mild symptoms, the research suggests that your body will respond as a person without MS. No you can't really overdo it unless you suffer as a result. It is a bit of trial and error
Heather
I read some research from the 1970's by W. Ritchie Russell (prof Neurology, Oxford) who suggested that the more you do the better, and so I have done as he says!
Jo - Physio
What is good in an exercise programme is to do some strengthening exercise and some cardiovascular exercise
Simon - MS Trust
David, do you follow any activities (we've been talking about exercise, pilates and swimming but any activities or sports at all would be of interest)
David I am following the chat. I am interested in swimming - it might help me with my balance, which is a daily problem. Activities in water might help
Ellie
Jo what about horse riding? I used to ride years ago, but not since MS. I'm afraid my balance is not good enough, yet they do hippotherapy
Tim
Ellie, have you tried riding for the disabled RDA?
Ellie
No Tim, I have not tried that. I believe there is a stables near us where they take disabled
Jo - Physio
Horse riding is now available even for those with a severe level of disability. Maybe find a class for the disabled to start with and you may surprise yourself - you may find it helps your balance. balance needs challenging to improve
Ellie
Can't be worse than a wobble board I suppose!
Tim
My sister is a volunteer at her local RDA and says I should try it as I used to ride years ago
Heather
Ellie, What about cycling? Can be dangerous if your balance is very bad though. I fell off this summer, but I'm not letting it put me off
Jo - Physio
Cycling is a great way of exercising - if your balance is really bad, there are the recliner bikes to lean against
Simon - MS Trust
We had an article in our newsletter last year from someone who uses a hand cycle - an attachment onto a wheelchair that allows her to pedal with her arms. I think MS Matters also mentioned this
Ellie
Oh Heather ! I did try on a campsite in Spain. I borrowed a bike, felt very proud of myself for a few minutes then fell off in a heap. Every one was cheering
Heather
Ellie, I'm sorry about that. At least no one was looking when I fell off - but I was embarrassed none the less
Jo - Physio
I've just realise you mean push bikes - how about a static bike?
Tim
I would have the same problem but I do use bike in gym
Ellie
Oh yes, I do that at the gym, half an hour at 70
Heather
That sounds impressive. I did the Tweed Valley cycleway this summer, which was 120 miles, but then I fell off at home
Jo - Physio
I did some research with a small group of people with MS and they found they improved physically with regular cycling. If you haven't cycled before though, build up your amount slowly and just watch for a negative effects
Ellie
Heather that is really impressive. I'm terrified of the roads now. A few years ago in Germany I hired a bike and went all over on it, but I was not so bad then
Heather
Yes I am worried about the fact that I may get worse, and on the whole I prefer to walk as briskly as I can each day
Ellie
You are lucky. I can't do the brisk walking bit any more. I have a scooter. Funny I can manage on the treadwheel at the gym
Jo - Physio
Jamie, Did I answer your question - can you see benefits from your exercise?
Jamie
I believe so - certainly mentally. What terrifies me is I play games like cricket and golf where I will be able to see my deterioration very rapidly if it happens
Jo - Physio
Jamie, you can't predict your course at all, so you must just enjoy what you do and keep as fit as you can
Vicki
My gym membership is suspended (dodgy legs). Should I keep paying 50 a month? All I can do now is swim and pilates. Should I carry it on? My legs are so weak and I'm only 30
Jo - Physio
Any exercise is good - if you can still swim then do, including aquaerobics. The others were saying they can do more in the water than on land
Heather
Vicki, yes, you should carry on with the swimming. Does this mean a costly gym membership, or could you just go to ordinary sessions at local pool?
Jo - Physio
And as for pilates - I think this cxhatroom has lots of converts to pilates
Jim
Vicki, keep on with as much exercise as you can
Ellie
Vicki, I do aquafit, and my legs are dreadful, yet in the water I can jog, even run (slowly)!
Jo - Physio
The less you do, the weaker your legs will get, even without any effect of MS, so do keep as active as you can
Jo - Physio
I have a couple of patients who struggle to walk yet go to aquaaerobics twice a week. Also if you can't get in the pool, many have hoists
Ellie
We have a lady, her problem is heart, but she is grossly obese, she is in a wheelchair. They take her in in it, and help to the edge and she sort of flops in, they have a hoist but she wont use it
Vicki
Thanks. Maybe I should keep the membership. The gym is only five minutes from home and very nice people. Local pools are further away. Just trying to justify 50/mth. Think I need to keep my legs active. Better go for now. Thanks for the advice
Heather
Must get back to work now - keep up the exercise all of you!
Ellie
What was that horse riding thing mentioned again?
George
That sounds interesting. Have you done that, Ellie ?
Jo - Physio
There are riding for the disabled clubs where they will assist people onto horses
Tim
Ellie try http://www.riding-for-disabled.org.uk/
George
Tim, have you tried riding? Did it help?
Tim
No. My sister is a volunteer at her local centre and has asked me to try as I used to ride years ago
Jo - Physio
I know people that have tried it and love it - even with quite bad levels of activity
George
Are there particular exercises or is it like pony trekking? I've never ridden a horse
Jo - Physio
Doesn't matter if you've never ridden, they will teach you - it is riding though, not exercises
George
That sounds good. Something fun that helps rather than just 'doing exercise'
Jo - Physio
Did you hear the cycling discussion - that is another way?
George
With weak legs, I feel wary of doing something that I might not be able to do quickly. Riding a bike is something where I might look silly if I can't go on. No one would expect me to be able to ride, so I'd be better able to be bad at it :-)
Jo - Physio
You may struggle on a push bike, but not necessarily on a static bike. Have a go at the riding. Any exercise is a bonus - you need to enjoy it
George
I think the idea of going to a gym full of fit people worries me too, hence something to disguise my limitations
Jo - Physio
There are now gym sessions organised for people with disabilities to help with that fear of looking silly. It is called exercise on prescription - your GP can refer you. But if you don't fancy the idea of gyms at all, don't worry. There are plenty of other ways of exercising
Simon - MS Trust
A question emailed in before the session. Margaret asks 'Can you suggest exercise that I could do that would not aggravate the tightness round my middle, nor worsen my painful legs? I do walk about during the working day and walk the 15 minutes home
Jo - Physio
Pilates may well be a way to work on the muscles in the 'middle'. As for the pains in the legs, I would suggest Margaret saw her doctor about that, as they may be able to give her something for it. When reading the previous discussion, Margaret may also consider aqua aerobics or cycling too - they shouldn't aggravate the tightness in the middle. I wouldn't rule out any exercise, but try it and see the effects - if it helps continue. The only reason to stop is if you get negative effects. That goes for everyone really
Simon - MS Trust
Hello Kate, do you have a question or a comment about activities for people with MS?
Kate
I've only been diagnosed a year and am lucky to have not too bad symptoms
Jo - Physio
And do you exercise regularly to keep yourself fit and strong?
Kate
I used to run a lot and still do shorter jogs. I play badminton too. Are there precautions I should be taking? Should I not do certain things or am I OK until I'm no longer OK?
Jo - Physio
Not at all - regular exercise is good for you. The only reason not to do something is if you get a negative effect from it - so as much as you can is good. In the past people used to get told to take it easy and got weaker from doing less. So keeping active is good
Kate
I used to run till I was exhausted. Then I found it started taking ages to recover, not just a few minutes. This was before I was diagnosed. Now I take it much more gently
Jo - Physio
What is ages? And do you mean to get your breath back or recovering from achy legs?
Kate
No, I'd be useless for the rest of the day - flaked out and feeling like I'd just finished hours afterwards. Not out of breath, but feeling drained
Jo - Physio
It is normal to feel tired after exercise and to get aching muscles, because you have used them. But that is a bit extreme, so tapering it a bit is probably good. If you can still run great, but perhaps run until you are tired, rather than exhausted and see how your body responds to that
Simon - MS Trust
The literature tends to suggest that exercise that builds strength is good but that exercising to exhaustion can have a negative effect
Kate
That does seem to have been better for me
Jo - Physio
And that is the thing to judge - how your body responds. A bit of tiredness is okay but not exhaustion
Kate
Thanks
Simon - MS Trust
Hello Brian. Do you have a comment on activities for people with MS or a question for Jo?
Brian
Hello. I used to be moderately sporty before MS. Now I'm in a chair. I have physio but would like to find a sport
Jo - Physio
There are groups that arrange sports for people with MS who use wheelchairs - Simon may have some more info
Simon - MS Trust
Brian, what sort of thing might you be interested in?
Brian
Hard to tell. Never done anything sporty since I've been in the chair
Sue - MS Trust
The MS Trust is collecting information from people on accessible sports that will be produced as a CD later in the year
Brian
Almost need a menu to pick something from that I could try
Jo - Physio
We have a local group that arrange sporting activities - where are you based?
Brian
North Wales
Sue - MS Trust
Some examples are sailing, gliding, fishing, canoeing, powertriking
Brian
What are powertrikes?
Sue - MS Trust
A Powertrike is a way of adapting your wheelchair to give it extra speed and power so you can take it off road, along paths. Their website is www.pdqmobility.com
Sue - MS Trust
The British Wheelchair Sports Foundation is the umbrella body for 17 different wheelchair sports associations. Their website is www.britishwheelchairsports.org
Kate
Are there things for people not in wheelchairs but who might be looking for some a little gentler than previous?
Jo - Physio
If you are still able to participate in non-wheelchair sports, then cycling, swimming, walking are all good
Sue - MS Trust
Yoga and tai chi could also be good
Mike
I was using equipment in my local hospital neuro gym until I was found to have high blood pressure, which has put a block on that for now
Jo - Physio
Presumably they will bring that under control and you can get back to it
Mike
More incentive than home exercises
Jo - Physio
We were saying earlier, it is really important to enjoy whatever form of exercise you do, because then you are more likely to keep going with it
Sue - MS Trust
Jo, what do you think of toning tables?
Jo - Physio
Interesting question - from a physio point of view, it is not something I know much about. If you can activate the muscles for yourself, then that has to be better but if you can't and have a muscle imbalance because one group is active, we have tried the stimulators. I have not seen any specific research on toning tables and so am hesitant to come down too strongly either way. Sorry to be a bit vague
Sue - MS Trust
I had an email from a lady who recommended using mechanical beds - they either move by themselves or you can work out with them. She said she used them regularly for movement and found they helped her mobility as they helped to loosen her joints
Mike
Is tiredness and constant fatigue to the point of breathlessness after doing very little a normal or common MS occurrence? Or might there be something else going on as well
Kate
Mike, that sounds a bit like me. Stuff I used to be able to do now would wipe me out
Mike
It seems that 99% of people I see at the local MS centre have more "go" in them than me, even though I am still mobile after eight years. In fact the get up and go went years ago lol
Jo - Physio
Do you do any exercise, because some people find that their fatigue improves if they exercise regularly
Kate
Does this change from day to day, Mike. Some days I can almost keep up with my get up and go. Other days I can't even get up
Mike
I do see physio at centre, but find it hard to motivate myself to do exercises at home due to feeling weary
Jo - Physio
If you have a real problem with fatigue, there are some fatigue management programmes being run - that might help.
Mike
Most days are not good ones but then again there may well be others who would class them as great ones? Suppose its all relative
Brian
Oh yes! Compared to a few years back, most days are not great. But they are OK for now and I make what I can of them
Jo - Physio
Is it a feeling of overriding exhaustion with all activities or do you just get more tired than you did before your MS?
Mike
What are fatigue management programmes?
Jo - Physio
Fatigue management programmes are where they look at your lifestyle and suggest ways to adjust life to reduce fatigue
Mike
For me its usually overriding exhaustion, and sometimes just tiring more easily than pre MS
Jo - Physio
Maybe ask at your centre about fatigue management programmes in your area
Mike
I know exercise gives a feel good factor, and when blood pressure is reduced I fully intend to get back to the gym
Jo - Physio
The literature does suggest that regular aerobic activity, such as gentle cycling can reduce tiredness. But it may not work for you, so you'd have to try it and see
Brian
What sort of things do you do, when blood pressure allows?
Mike
Exercise cycle, upper body exercise machines involving weights, leg weight exercises
Brian
Were these things your were doing before MS?
Mike
Never set foot in a gym before, was just trying to maintain what fitness I had/have
Jo - Physio
The literature recommends that we do 20 plus minutes of aerobic exercise, such as the bike - this is good to try and work up to
Brian
What exactly does aerobic mean?
Jo - Physio
Exercise for your heart and lungs - so raising your heart rate, rather than strengthening which serves a different purpose
Brian
Did someone mention exercise on prescription earlier? Did I see that? Can you get exercise on the NHS?
Jo - Physio
Yes! I think it is a national scheme. You get your GP to refer you to your local leisure centre, where they give you a programme of exercise and then you have 10 sessions at a reduced rate
Brian
How do you qualify? Is it by assessment by the GP or do you just turn up and ask?
Sue - MS Trust
Brian, there are more details about exercise on prescription on www.birmingham.gov.uk/leisure and tourism/sport and leisure centres/disability sport
Jo - Physio
Thanks Sue, and you do need a referral - from any health professional but check it out. There is no 'qualifying' - you are entitled to it
Brian
Great - thanks Sue and Jo
Mike
At what blood pressure reading would it be considered OK to exercise? Diastolic down to 100?
Jo - Physio
Blood pressure is individual and it depends on your normal. It is more important that it is stable than the figure, but 100 is probably ok - be guided by your doctor
Kate
Is your blood pressure the result of MS or was that a problem anyway?
Sue - MS Trust
I received an email from someone who was asking about concessionary rates at leisure centres. He said they did not apply to him yet but that they probably would when he was too ill to use them
Jo - Physio
Sue, I think you can get a disability badge to get concessionary rates - but not at all centres
Mike
I wasn't impressed with my local sports centre for the prescription exercise. They weren't used to people who suffer MS fatigue
Vicki
Is it ok to swim if your legs are weak. sometimes I can't walk much when I come out of the pool. I feel a bit embarassed
Brian
Do you find that people think you odd for having MS and still wanting to remain active? They seem to think anything above vegetable state is somehow wrong
Vicki
I think people look at you differently when they know you have MS. They think you shouldn't do anything!
Mike
Most people wouldn't know there's anything wrong initially
Vicki
Until you fall over in class or wobble out of the pool
Mike
Until I walk too many steps that is
Kate
I've found that. I have few symptoms and nothing 'obvious', but as soon as I say MS they change their approach
Mike
Which is why I don't mention it, Kate
Vicki
We're just special. We know the truth
Jo - Physio
Who changes their approach, Kate ?
Kate
Just people. Some are fine, some seem affronted that I don't have spots or need an iron lung. Some seem to back off as if I'm unclean. Suppose I'm just experiencing ignorance and fear of the unknown from the other side
Jo - Physio
Which is just ignorance, but I know that doesn't make it any easier. The disability discrimination act should make awareness better as everything should become more everybody friendly rather than disability being different
Simon - MS Trust
That's a point a local councillor made when she contacted us about the room. Accessibility should mean opening services to everyone not considering it the making of adaptations for a few because the law tells you to
Mike
I need to go now, thanks for your time each of you and best wishes
Simon - MS Trust
Thanks for your input Mike. Look for the transcript next week
Simon - MS Trust
Hello Geoff. Do you have a question for Jo or a comment about activities for people with MS?
Geoff
How do I find out if I can get hold of equipment that will allow me to do things? You see the London Marathon and these people have special chairs and so on
Jo - Physio
Equipment is generally provided by an occupational therapist - you can get a referral by asking your GP to refer you to the social services OT
Geoff
Are there places where you can borrow these sort of things to try things out or is it a matter of investing up front?
Jo - Physio
For more swish stuff - it may be you need to go privately, but an OT can arrange for a rep to come and show you what there is
Geoff
Will they have things for more than day to day living?
Jo - Physio
I am sure there are places that loan items - you probably have a local aid and equipment centre - try ringing them
Simon - MS Trust
We will have an OT in the room later on who may be able to help with this question. And if there is no standard equipment available, the charity REMAP may be able to help with adaptations
Jo - Physio
Jo, do you have any questions or comments about activity and MS?
Ginger Jo
I participate in triathlons and have recently been diagnosed (Nov 03), I just wondered what else people do?
Jo - Physio
We've had various discussions- pilates, yoga, swimming, cycling - there is no shoulds or shouldn'ts - more what works for you
Ginger Jo
Jo, The only problem I have is the fatigue, it mostly hits me after a 24 hour shift at work, but I try not to train too hard on these days - not always poss
Jenny
Wow triathlons! What do they include?
Ginger Jo
Swim, bike and run all back to back no stopping. It's a real endurance sport but becoming more popular. They come in different distances. The ones I do are only little! 750m swim, 21k bike and then a 5k run
Jenny
And you do this with fatigue? That's impressive
Ginger Jo
At the moment I am planning on doing five possibly six this season and a swim only event. If you want more info on triathlons in the UK try the British Triathlon Association at www.bta.org.uk
Jo - Physio
Don't feel you should stop the triathlons - the comment we did make earlier though is not to work to exhaustion
Ginger Jo
Everyone's MS is different and I can continue at the moment. I'm even going to buy a horse to ride in the winter. My hubby's a fitness instructor so I do have an unfair advantage - my own personal trainer
Jo - Physio
Excellent - the fitter you are, the better for your body
Ginger Jo
The fitter you are the further you have to fall
Jo - Physio
Psychologically I am sure that is true, but it also means your muscles, heart and lungs are in a better state of repair
Ginger Jo
True. I also think exercise can help those patients who are more disabled than myself. Rob (hubby) has shown a couple of MSers round the gym he works at. They appear to be improving in their general well being and flexibility
Jo - Physio
For everyone, I recommend keeping your body as active as your MS allows, because inactivity is a vicious circle, where the less you do, the less you can do. And it has been shown that it can improve fatigue levels too
Ginger Jo
I've found that Ginseng helps too - whether that's just psychosomatic or is a real benefit - who cares!
Jo - Physio
That is interesting - I haven't heard that used before. Is it taken as a tablet?
Ginger Jo
Yes you can get it in most health food shops, I've heard that acupuncture can help too
Jo - Physio
For some it does - but again it is individual
Jenny
I think my involvement with triathlons would be as a spectator. I used to ski but feel wary of it now. Tend to swim a bit and go for walks
Ginger Jo
Jenny, that's what got me started but they are great to watch. I'm doing a triathlon as a fundraiser for the MS trust in June. Will anyone out there sponsor me? I have a website to donate on www.justgiving.com/weardaletriathlon
Jo - Physio
Are you wary of skiing because your balance is a problem Jenny ?
Jenny
It's the tiredness as much as anything. And I'd be wary of getting stuck halfway up a mountain feeling knackered and unable to get down
Ginger Jo
Jenny, you get skiers in the paralympics. There must be a way. Try asking at a local dry ski slope?
Sue - MS Trust
Have you heard of monoskiing?
Jenny
No. What's that?
Ginger Jo
Sue, what's that - skiing on a snow board?
Sue - MS Trust
Basically you're in a sitting position on a single ski in a harness and your ski poles have skis on them as well for stability
Jo - Physio
They do do single skis in bucket seats for paraplegics - don't know if it would help the fatigue, but you could just do a shorter day and have a rest for a drink more often
Ginger Jo
Jo, is fluid intake a problem for MSers or just good idea generally?
Jo - Physio
Definitely good to keep fluid levels up - dehydration can mimic fatigue
Ginger Jo
That's a problem for me as I can't drink little and often as I'd like cos they don't let you drink in a lab!
Jo - Physio
Jo, could you not use the DDA to say you need to have a drink, or need to be able to go out for a few seconds at regular intervals?
Ginger Jo
What's DDA
Jo - Physio
Disability Discrimination Act
Jo - Physio
I'm off now. Bye all - do keep active!
Sue - MS Trust
Thanks Jo for all your help
Simon - MS Trust
We've been talking about different sports and activities that people take part in. Do you do any, or have you any comment?
Ginger Jo
All, do you have problems finding places to exercise in the community?
Jenny
I'm mostly walking, so that's available everywhere there's a path
Ginger Jo
Jenny, what about swimming, that's non-weight bearing so might be good
Jenny
Yes I try to swim once a fortnight
Ginger Jo
Jenny, fab, I find it really relaxing when I'm not going for personal bests! I can think through all that's gone on and unwind
Geoff
I tend to find I don't like places that seem to treat my needs as something special and unusual - probably my own barrier
Ginger Jo
Geoff, when you say needs does that mean wheelchair access and help getting into pools etc
Geoff
Yes. When people seem excited because they can use the special kit it puts me off. I just want to be treated like a normal bloke and have no big deal made of things. Suppose that's just my pride as they are only being helpful
Ginger Jo
I can understand that. When I was first diagnosed, people kept molly-coddling me - I told them to stop. Just pick me up if I fall over! My hubby's a fitness instructor. He tries really hard to treat MSers in the gym the same way as 'normal' people. He finds they get on much better that way. But finding a good gym instructor is hard if you're not married to one!
Geoff
That's what I want really. Finding one, not marrying them that is :-) See if I can do stuff or not do stuff, but don't prejudge me based on the letters MS
Ginger Jo
Geoff, I agree you are still the person you were before the diagnosis
Ginger Jo
All, does anyone do pilates or yoga? And do they find it helps flexibility
Jenny
I saw tai chi mentioned in the paper recently
Ginger Jo
Yes I think I saw that too - have you tried it?
Jenny
No, but I think there are classes nearby. Maybe I should try. It looks very gentle. Have you?
Sue - MS Trust
there is a website called www.taichifinder.co.uk to find a group in your local area
Jenny
Thanks Sue
Sue - MS Trust
You can also do tai chi exercises from a sitting position
Geoff
Maybe I should have a go
Sue - MS Trust
I also have heard of someone who does karate. She says it improves her balance, strengthens her legs and challenges her short term memory
Simon - MS Trust
Have people found any barriers to their following activities that they would like to take up?
Julie
re walking, difficult to get distance right ie when you have reached half way and so able to return! Any suggestions?
Jenny
I've been bothered by that myself though luckily it's never happened to me. I've relied on a mobile and a husband. Have you been stranded ever?
Ladywolf
I have no problem during any kind of physical activity except for after I have finished (mostly the day after) my legs and arms just stop wanting to bend!
Julie
The mobile and husband is OK if the terrain is accessible by vehicle! I've been stuck in countryside waiting for power to return to legs before retracing steps!!
Jenny
How horrible. How long were you there?
Julie
Took a good couple of hours to get sufficient strength back to make it home!
Jenny
Not nice. I used to ski and that was the sort of thing that put me off carrying on
Julie
Very wise - perhaps I should go for circular walks but that's not so interesting and since my main purpose is birdwatching, not likely to be too successful!
Jenny
Suppose birdwatching does mean going to quite remote places. Are you able to gauge your range with walking or do you only know you've gone too far when you've gone too far?
Glyn
What are people's views of taking medicinal cannabis ?
Sue - MS Trust
Hi Glyn - the MS Trust has a useful factsheet about cannabis - you can contact us if you would like to receive one
Julie
Any info on exercise bikes?
Simon - MS Trust
Jo the physio, who was on earlier, was very keen on bikes as a way of exercising. She also felt they helped with balance
Ed I use a tricycle. Look like an overgrown school kid but I'm balanced and can get about
Julie
Know you can't brand advertise but what features are recommended as seems it like a minefield. Guidance needed as price range enormous
Simon - MS Trust
If you see a physio, it may be worth asking them what they suggest. A couple of places that may have advice are the Disabled Living Foundation (www.dlf.org.uk) or the Disabled Living Centres (www.dlcc.org.uk)
Julie
OK thanks for that. Will give them a try. Signing off for now. Tks and Bye
Gail OT
Hi there everyone
Simon - MS Trust
Gail, an occupational therapist, has now joined the room. We're talking about access to sport and activities for people with MS. Do you have a comment?
Ken
How can an OT help with getting access to special equipment that might allow people to do sports?
Gail OT
Ken your question is quite tricky
Ken
Oh dear, thought it might be
Gail OT
OT equipment as supplied by social services tends to be just for daily independence not leisure activities. Do you have a specific item of equipment that you were thinking of?
Ken
Well that's it really, no. I use a wheelchair, so a lot of sports would require special kit for me. As I don't know if I'd like the sport it's tricky to get hold of the right equipment on the off chance
Gail OT
Has your local council got a sport for all advisor?
Ken
Don't know. What does that person do?
Gail OT
They should be looking at making sport facilities accessible to all people in the area. In some places they are more visible than others, and some focus on particular groups such as older people
Ken
And that's through the council?
Gail OT
yes
Ken
I'll check the phone book, thanks
Gail OT
Do you have any disabled sports groups in your area?
Ken
Again, I'm not sure
Gail OT
Most councils, as part of their websites, should have some pages which list local community groups, they may be able to help
Simon - MS Trust
Ken, the MS Trust is putting together a resource that may help with info on national sport organisations for people with disabilities and how to find local groups
Gail OT
Different Strokes which is a charity for younger people who have had a stroke and they are quite active re sport it might be worth contacting them. They might know of some resources locally that you could use
Ken
Sounds good
Simon - MS Trust
It's the sort of information that local branches of DIAL might have - Disability Infomation and Advice Line - www.dialuk.org.uk
Gail OT
Ken do you see a physio? They may have some local contacts
Ken
Had not thought of asking the physio (how daft). What I'm looking for is something to make exercise interesting, not just a chore
Gail OT
Do you know what sort of things you might like to try? - Gym, swimming, archery?
Ken
I've been wary of the lack of support so have really not dug to deep
Gail OT
Did you do any sport in the past?
Ken
Archery sounds good - not thought of that. Not much - but have more time on my hands now I don't work and would like something to get me out of the house
Gail OT
Archery is quite popular, people with spinal injuries often take it up to improve their upper body strength. Do you enjoy watching any sport as one way of getting out of the house might be to see about what you could go and watch
Ken
It's a case of knowing what I can do and what the MS will allow. Will I be bad because I can't do it, or will I be bad because of the limits of MS?
Gail OT
That's why having a chat to your physio might be helpful, they could look at how you can use your strengths. Having MS doesn't mean you can do anything, you just might have to be more selective. Ryder Cheshire volunteers is a group that can offer support in doing hobbies. They try and match people up with similar interests. Thinking about things to get you out of the house - how about something like birdwatching? Some football grounds allow "pushers" in free, as do some other activities, which makes the cost of going a bit cheaper
Jenny
Hobbies? Is this more laid back than sporty things?
Gail OT
I was thinking of staying active physically and mentally - we need both?
Jenny
Someone mentioned birdwathing a while ago
Gail OT
Gets you out in the fresh air
Simon - MS Trust
By way of an aside to Gail's comment on keeping the mind active, a year or so ago a researcher in America was looking at the role of bridge as a way of keeping healthier. The idea was that the mental activity was good for people
Gail OT
There's been lots of studies in older people that those who have hobbies that exercise their minds stay more active and involved in life
Ken
Think I may go for the football ground option
Gail OT
That would be a good chance to get together with other people who have a shared interest
Ken
More like counselling at Northampton :-)
Gail OT
LOL. Ken do you have an OT?
Ken
Not seen one. Unless an OT did my chair at the hospital?
Gail OT
Probably was an OT. OTs should be able to talk to you about what interests you and perhaps come up with ways in which you could do them. Do you see your physio at a rehab centre? Perhaps she could ask the OT to see you?
Ken
I go to the therapy centre. That's a good idea
Gail OT
Ken I hope you can get to see an OT who will help you
Simon - MS Trust
An OT student sent in a question concerning tai chi and MS. Do you have any thoughts on that, Gail? Or anyone
Gail OT
Tai chi has been proven to reduce the incidence of falls in the elderly because it improve balance and flexibility. People think that because it's slow it's not very challenging, but it's good at helping you focus on control
Jenny
I've tried yoga - is the principle the same (though different in practice)?
Gail OT
I would think so - I've done both and there are certainly some similarities in terms of focus and using your breathing as part of the whole thing, which means it helps you relax as well as exercising the body. I would have thought that something that looks at the quality of the movement, rather than how many and how fast it quite therapeutic and you don't try to be competitive and get worn out. Pilates is also quite good, as that focuses on what they call core stability. If you have more control over your pelvic and back muscles it can improve walking
Ken
Can any of these be done when you're in a chair?
Gail OT
The Yoga Foundation runs courses for people with MS. They're in Bedfordshire.
Simon - MS Trust
They have a website at www.yogaforhealthfoundation.co.uk
Gail OT
I think our local MS Therapy centre here in Bucks runs yoga groups
Simon - MS Trust
And there's info on the therapy centres all over the UK at www.MS-selfhelp.org/html/therapy_centres.html
Simon - MS Trust
Hello Ian. We're talking about sports and activities for people with MS. Do you have a comment or a question for Gail?
Gail OT
We've been talking about yoga and tai chi
Ian
Does tai chi help?
Gail OT
Studies have been done with older people, and it reduces falls. I don't know of any studies in MS. Tai chi is thought to help with balance and flexibility
Simon - MS Trust
Hello Keith
Keith
Hi. Saw the link below the one to this room was for parachuting - that's not a thing for MSers is it?
Gail OT
Depends how brave you're feeling!
Simon - MS Trust
Could be. We've had people with MS who've done fundraising jumps for us (see www.mstrust.org.uk/jump)
Gail OT
Even strapped to someone who knew what they were doing - I'm not sure I could do it
Keith
Oh! Maybe something closer to the ground :)
Gail OT
I didn't mean to put you off, I don't like flying so jumping out of a plane would be a step too far!
Keith
I'm with you on that. I used to play football and cricket, but now walk with a stick so they are out. I play snooker, but nothing much more energetic
Gail OT
Do you support a local (or otherwise) football team?
Keith
I go and watch Blackpool occasionally
Gail OT
How do find getting into the ground and the facilities?
Keith
It's a bit of a maze of steps, but I can take it gently if I avoid the crowds - I get there early, leave late
Gail OT
That can make it a long day, do you have a long journey to the ground as well?
Keith
Brother in law drives me there. Can be a long day but we only go a few times a season. Loos were a problem until I was given a personal solution to that. Now better off than most as don't need to queue
Gail OT
You knew there had to be something positive about MS - now you have it -no queue for the loo:)
Keith
Funny thing that. I'd have died had you told me about that that sort of thing a few years back. Now it makes things so much easier it's a wonder everyone else doesn't do it
Gail OT
I think it would mean that we would be even more a nation of couch potatoes
Keith
LOL I think you're right
Gail OT
Do you find you get bored and would like to do more activities?
Keith
Doing something myself would be good
Gail OT
Do you have any other interests - not necessarily sport?
Keith
I read. Not very active thing
Gail OT
We were talking earlier about keeping mentally active to stay healthy as well as physical activity. Simon mentioned a study about bridge as an activity, and I mentioned birdwatching
Keith
Oh yes, without anything to do I'd just waste away
Gail OT
I know what you mean. I always have my head in book. I also potter about with painting and crafty things. But not basket weaving
Keith
I've avoided that as well
Gail OT
LOL. Wet cane makes your fingers bleed. Never touched the stuff since college in the Jurassic period
Ellie
Hello all
Simon - MS Trust
Welcome back Ellie. We've been talking about parachuting (not much support) and then mental activities such as reading
Gail OT
Not much support sounds like no parachute!
Ellie
Oh, nothing, not even MS trust would get me to jump out of an aircraft, my worst nightmare!
Simon - MS Trust
I'm told parachuting is very exhilarating. Though am happy to go with second hand experience
Ellie
I had a look at the disabled riding website, but they are all too far away. We have Hope in The Valley here, but that is just for children. I may ring one or two stables
Ken
I play chess. Though find that sometimes I can't concentrate. Hot weather etc
Gail OT
I find that making erratic moves in chess annoys the heck out of the opponent and sometimes results in a win. I work on confusing the opposition
Ellie
My hubby does crossword puzzles all day sometimes, says it keeps his mind active
Gail OT
Crosswords are one of the recommended activities to keep the brain active
Ellie
I'm too impatient to do them
Gail OT
Do you get fed up with all types of crossword or just some sorts like cryptic ones? What do you do while your husband is buried in his puzzles?
Ellie
Mostly Paint and draw, or watch TV or listen to a talking book
Gail OT
Ken does your concentration fade or is it just sometimes harder to concentrate, or both
Ken
I find if I'm OK that day, I'm OK. If not, the mind won't settle and so chess is a non starter
Gail OT
Have you found anything that helps your mind settle?
Ellie
Meditating is good for settling your mind
Gail OT
Ken have you tried meditation like Ellie suggests?
Simon - MS Trust
Suzy, do you have a comment - we've been talking about less sporty activities like reading, chess and crosswords
Suzy
Much more my sort of thing! Seriously - my only problems are with tiredness and I'm really bad at 'managing my fatigue'!
Ellie
How long have you had MS Suzy
Gail OT
Well Suzy you're in very good company - managing fatigue is a real challenge
Suzy
Diagnosed 2002 - but first symptoms way back in 1980 something!
Gail OT
Is there a particular bit of managing fatigue hard or is it all of it?
Ellie
I started in '83 I find I have to try really hard, bed regularly after jobs in the house
Suzy
Gail - how do you know when you're overdoing it? On a good day I just think 'excellent!' and then wipe myself out for the next two..
Gail OT
you're obviously psychic you've just answered the question I was typing. That is overdoing it!
Suzy
On a bad day even washing my hair is too much to handle!
Gail OT
Do you work Suzy ?
Suzy
Part-time - although not for much longer as my contract isn't being renewed
Gail OT
Ouch
Suzy
So it's back to full time house-slave! and chauffeur for the kids
Gail OT
Have you seen an OT about how to mange your fatigue?
Suzy
Not yet - I live in a very under-resourced area
Gail OT
One of the principles of fatigue management is to try and balance everything out -not fit it all into a good day. Easier said than done. Do you have an MS Nurse?
Suzy
Sort of - but she's across the Irish Sea in Liverpool!
Gail OT
Can you explain that - do you live a long way from where your MS nurse is based?
Suzy
I'm in the Isle of Man
Gail OT
You could see if your MS Nurse could help with fatigue management. You could try looking at all the things you do or want to do and spend time planning and prioritising
Suzy
I'm trying to get referred to the MS nurses special fatigue clinic in Liverpool - but if I can't then I'll have to pay
Gail OT
Suzy try and enlist your MS nurse's support in getting you some help without paying. Surely there are some OTs in the Isle of Man?
Suzy
There are, but there's no 'joined up thinking' knitting together the 'experts'
Gail OT
That's so frustrating for you
Suzy
The MS Society here is campaigning for an MS nurse here so we don't have to keep going to Liverpool
Gail OT
MS Nurses are great for focussing the mind and drawing attention to what should be provided
Suzy
I can't really complain - I walk my dog for half an hour to an hour every morning!
Gail OT
Walking the dog is really good exercise
Jill
Trouble is Gail, it is often we the people with MS who end up doing our campaigning and as we all know we get tired enough without having to fight our own corners
Suzy
Too right Jill - I have to schedule in a sleep before I go to an MS Society meeting!
Gail OT
I know Jill, I hope that with the National Service Framework as well as the NICE guidelines things will start to improve, but it takes so long
Jill
Gail I too hope that the nice guidelines will achieve some results for us all
Simon - MS Trust
No mention of activities and sport in the guideline, but it is an important part of life
Gail OT
Leisure activities are in the NSF
Jill
So remind us about the difference between NICE and the NSF
Gail OT
NICE was about what should happen now, and the NSF is about how things should develop over the next ten years and is broader than the nice guidance
Jill
Have you talked about swimming/exercising in the water yet?
Ellie
Yes we did this morning. I think its wonderful. I do aquafit
Suzy
Is that good Ellie ? Might be able to fit it in when I've stopped working!
Jill
I just do a weekly swim with a few lengths backstroke and some exercises - don't know much about aquafit?
Suzy
Anyone know about acupuncture? I've had three sessions and it seems to be working
Ellie
I do it twice a week, referred by GP
Keith
Have a friend who does acupuncture and swears by it. Does it do any good?
Suzy
Well it's either doing some good or I'm convinced that it better had be as it's costing me 30 quid a session!
Ellie
That seems an awful lot of money Suzy
Keith
Is that the usual price? Is it available on the NHS?
Jill
Is that 30 for acupuncture?
Gail OT
Acupuncture can be through the NHS. Some physios do it and some GPs as well, but it's very variable
Ellie
We are lucky here, over 65s get full Gold membership of the Leisure Centre, including any classes, the gym, two pools so I think that is a good deal. I started with a GP referral, and also physio referral from Hurstwood Park Neuro centre, then when I had done my 20 sessions I joined the club
Jill
Have you had MS for a long time Suzy ?
Suzy
About 17 years but only diagnosed two years ago
Jill
Have you had the fatigue for a long time?
Suzy
On and off for years, but now I know why!
Jill
It gets really soul destroying doesn't it? I just wanted to say that exercise is often the last thing I feel like doing but when I do my exercises or go swimming I always feel better for it
Ellie
Me too, Jill
Gail OT
Exercise is really good for releasing hormones that make up feel better
Jill
I'm glad you schedule in a sleep Suzy. I find it really "boring" having to schedule rest periods in to my day
Suzy
Forward planning...........so do I!
Gail OT
But it should help. Bit like nasty tasting medicine
Jill
Sleep is like nasty tasting med you mean?
Gail OT
Scheduling in rests and being more organised is a bit like nasty tasting med - unpleasant but necessary
Suzy
Jill - if I'm going out socially I plan a sleep for before I go and then schedule an entire day in bed to recover!
Jill
Organised! That is something I was not before MS
Suzy
My problem is that I've never been sporty in my life - so trying to keep fit now when I'm so tired really goes against the grain!
Jill
Me too, Suzy, but swimming is really relaxing. Have you a friend who would go with you regularly?
Suzy
My doctor thought that just getting into the water would relax me and make me feel better I didn't have the heart to tell her that just the thought of getting in and out of my clothes was too tiring! It WAS a particularly bad day!
Jill
Water is amazingly good for balance too
Gail OT
Swimming is great you just need to make sure you don't do too much as the water helps keep you cool until you get out of it
Jill
When is do my lengths on my back my heart really beats fast and no it is not fear it is because I do not move very quickly with my crutches!!!!
Suzy
Gail - how do you know when to stop? Once I get going I'm always 'just one more length'
Gail OT
Suzy you should try and set your self a number of lengths and stick to it
Jill
Knowing when to stop comes with experience - I find that some weeks I can do more than others
Suzy
I suppose I know that really! It's frustrating though
Gail OT
If you stop before you get tired you can start to build up gradually not all at once, but have a minimum that you know you can always achieve
Suzy
OK - sounds sensible
Gail OT
Suzy I think it's about trying to make sure you don't get stuck into a pattern of feeling a failure because by doing one length more you're too tired after
Jill
Gail, what do you think about hydroetherapy for people with MS?
Gail OT
Hydrotherapy pools are usually very warm so they don't suit everyone
Jill
I agree that has been my experience. However the perfect leisure pool with the just right temps are hard to come by as well!!! Anyway I have to go now but it's been a great fast moving chat
Sally
I used to be a keen tennis player, but now am not really able to do that
Gail OT
Bye Jill
Jill
May I just remind everybody about the MS echat group MS People UK. Maybe speak to some of you there?
Simon - MS Trust
Thanks Jill
Suzy
I've got to go too
Gail OT
Take care Suzy and good luck with getting an OT
Suzy
Gail, I'll try and follow your advice. Thank you!
Gail OT
Hello Alan
Alan
I've had MS since Sept 93. Looking back on my 61 years, I now know what caused my body to break down. In 1991, following my second divorce, I decided to escape from England for three months and to cycle from Atlanta to Nova Scotia. My fitness was tops, but I was worried about the lack of vitamins in American food
Gail OT
That's amazing how many miles was that?
Alan
I started taking vitamin supplements to boost my auto immune system. The guys I was with noticed the difference. It was the extra vitamin B that made me more relaxed and a better rider. Other ways of recovering from MS - First realise what caused your body to break down and be positive, do something about the problem. And avoid the build up of adrenaline - I use meditation to to do this
Gail OT
Alan do you still cycle?
Sally
I just wanted to say that I used to play a lot of tennis, but can't do that anymore as I couldn't keep up my pre MS standard, I lost interest in playing
Gail OT
Do you do anything else to keep fit and / or active?
Sally
Luckily I've met up with a group of people who are all equally bad at badminton and that helps no end. Because none of us are any good we're not competitive and just have fun. And they don't mind when I need to sit down and just watch
Gail OT
I think badminton is harder than tennis - I'm impressed. It's good that you've found a group - the social side is just as important as the exercise
Sally
At our level it doesn't go so fast and you don't have to move as far. And yes, it's the fun with others that's good now, not the winning that used to drive me
Gail OT
Do you do any other activities such as swimming?
Sally
I do swim. Always did, but am just a little slower now
Gail OT
sounds like you're doing a fair amount of active things
Sally
I'm fine so long as I set aside part of the day to rest afterwards. Otherwise this would knock me flat
Gail OT
Finding the right balance for you is what's important
Sally
Swimming is once a week, badminton maybe once or twice a month. Not hectic, but I think I'd feel despondent without activity
Gail OT
I think to be healthy you have to prioritise time for things that you enjoy, whatever that may be
Sally
That's true. I have to be careful with how much of everything I do, whether it's the laundry, going to the shops or going for a swim. But all laundry is no life, so time for fun is important too
Gail OT
It's really important that the day to day things don't take everyone needs to have fun too
Sally
I agree completely
Gail OT
I'm all for a spot of delegation - share out the chores and then everyone can enjoy something together. Obviously you have to have someone to delegate to...
Sally
I am fortunate in that, yes. Mind, I wouldn't want to give up all the chores. Much as I dislike ironing, giving it up would be an easy failing
Gail OT
Ironing is probably less tiring than hoovering - so there is a trade off
Sally
Ah, my secret rumbled :-)
Gail OT
Now housework doesn't generally come up as a sport (apart from extreme ironing) but it does take up a lot of energy
Sally
That's really the problem, isn't it. With the cost of managing your life day to day it's easy to make fun sporty things seem unimportant or at least less of a priority. And then you find you do nothing at all and feel much worse for it
Gail OT
That's why I always encourage people to prioritise time for themselves. Otherwise you feel like a hamster in a wheel
Sally
I made that mistake for a while and rather let MS take me over instead of trying to carry on being me, even if in a slightly different way than before
Gail OT
It's really easy for that to happen. You can think that by ignoring it and working hard that the MS is not affecting you, but in reality it's taken over. But it's really hard to find the way through that issue
Sally
It almost feels selfish at first. You only have so much energy and the housework's still there. But the other stuff is just as important. I think Jill was talking about priorities before. That's it. Different days, different things. But looking after yourself is definitely one of them
Gail OT
I don't think housework should be the top priority. It doesn't matter if your house is immaculate if you have no energy to enjoy time with your family and friends
Tony
I agree about what's important. When you have MS, things are in a different perspective. Stuff that had to be just so doesn't get done to quite the same level and yet the world goes on
Gail OT
Yes, I think you have to think about what you really are irreplaceable in and being part of your family and friends is where you can't be replaced. Anyone can hoover or dust
Sally
Sorry, seem to have been pontificating for a while :-) But anyway - my comment is play sport with non competitive people who are as bad at it as you are :-)
Gail OT
Too right. I have a perverse competitive streak myself
Sue - MS Trust
Hi does anyone have any thoughts on diet? eg when is a good time to eat to improve energy?
Gail OT
Some people find they feel tired after eating. Generally it's recommended that you don't eat for 2 hours before exercise. You need to eat things that give a sustained release of energy like pasta and cereal not a mad sugar rush which can drop quickly
Tony
Is there anything in that vitamin B thing that the earlier chap was on about?
Gail OT
Too much vitamin B can have a bad effect on the nervous system, just as much as too little. It's important to have a healthy balance. You should try and get the recommended daily dose through ordinary food, and only take multivitamins if you are not able to have a varied diet
Sue - MS Trust
What about chocolate?
Gail OT
Chocolate is a sugar rush. But it does have tryptophan, which is supposed to make us feel better. And fat. Or did you mean something else?
Sue - MS Trust
Just wondering about timing a sugar rush to get some exercise in!
Gail OT
The endorphins from the exercise should mean you don't need the chocolate to feel better!
Simon - MS Trust
Do you have a comment on activity for MS or a question for Gail? We've been discussing different activities that people have tried and also the need to be careful of controlling fatigue. Has MS affected the activities you have been involved with?
Marilyn
Hello. Fatigue is a major problem so what exercise to do?
Gail OT
There's all sorts you can try. We've talked about yoga, tai chi, swimming and badminton. With exercise it's more about finding something you enjoy and finding a level at which you can do something
Marilyn
I don't drive any more so getting places relies on a bus
Gail OT
Buses can be a problem, have you got a friend or member of your family who would like to do something with you?
Marilyn
Only feel active mornings when people tend to be at work
Sue - MS Trust
Marilyn - have you tried Pilates? You can get videos to try at home
Marilyn
Would pilates help my balance?
Gail OT
Pilates is really good. It works on strengthening the muscles in the back and pelvis which can improve your stability
Sue - MS Trust
The Bedford Therapy Centre video shows their pilates exercises and has been made by people with MS
Gail OT
That's really good. The MS therapy centre in Halton, Bucks runs classes in yoga. Marilyn, do you tend to do all your household things in the morning?
Marilyn
Yes housework in the morning. Have stopped paid work recently
Gail OT
If you don't do housework do you have more energy in the afternoon or do you feel bad if you don't do it?
Marilyn
Doesn't help energy level any afternoon
Gail OT
Some people find that they get a second wind in the early evening, even after feeling tired in afternoon. Have you seen anyone about fatigue management?
Marilyn
I take modafinil which was great at first, probably still helps
Gail OT
Perhaps you could try having an easier day and going out in the evening with a friend and see how you go.
Marilyn
Pilates video sounds helpful. I do liven up in the afternoon.
Gail OT
Pilates is good for your pelvic floor - which can help with some bladder problems
Marilyn
Other things always seem more important
Gail OT
We were talking earlier about the importance of making time for ourselves
Alison
Hi. I am new to all of this..
Gail OT
It's only my second time in a chat room so don't worry
Alison
I was told by my MS nurse that pilates is excellent. Making time for yourselves is VERY important, but sometime difficult to do
Gail OT
I think if you have children it's very easy to put yourself last
Alison
Definitely!!
Gail OT
But if you're too tired from all the running around you're not able to concentrate on your family either. We all need a bit of sanity time
Alison
I have just returned to work today after 5 weeks off, and I am shattered tonight. I NEED some sanity time now I think!!
Simon - MS Trust
Do you do any sports or activities, Alison ?
Alison
I swim when I can
Simon - MS Trust
Alison, did you always swim or is it something you've taken up more recently?
Alison
I have always done it in the past, but I have let it slip of late! I will be getting back to it next week
Sally
I swim too when I can and find it makes me feel better in myself
Simon - MS Trust
It's 7 o'clock I'm afraid and we need to wrap things up. Thanks to Gail and to Jo who was on earlier for their help with this room and being online for longer than was originally billed, and also thanks to all the people with MS who shared their experiences and thoughts on this topic