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Staying Active

Having hemiplegia puts more stress on the body and it is likely to age faster than average. It is therefore even more important for someone with hemiplegia to try to keep fit and active than it is for a non-disabled person. At the same time, when you reach adulthood you will probably have much less contact with doctors, therapists and so on, so you are going to be more responsible for your own health and fitness.

I’m 22 and have mild right hemiplegia. I have noticed that sometimes my left knee cracks through what I’m told is wear and tear because my left side has to compensate more than my right. My right leg gets really sore when I’ve been walking for a long time, if I don’t stretch every few days my legs start to get stiff. My right arm tenses when I’m concentrating, and my posture isn’t too great either; perhaps I should sit correctly.

I am having to pay privately for therapies, this is a recent development. They help my walking by relaxing my left ankle, which has been damaged by falls and now has developed osteoporosis.

This is not to say that you should ignore your aches and pains; see your GP for a referral to a specialist if you have any concerns. A few sessions with a physiotherapist may help get you standing and moving better, and some members of HemiHelp, having rejected all orthoses in their teens, have realised an orthotic insole improves their walking pattern and posture. But any medical intervention will be more effective if combined with regular exercise.

When it comes to orthotics for me they really do help, but as an adult it is hard to keep in the system when it comes to having an orthotist and orthopaedic consultant. I say keep pestering professionals until you get what you need and never give up!

Basically the message is, be as proactive as you can. With hemiplegia, you exercise not to get fit, but to stay well.

In fact the HemiHelp members who completed our Over-16s survey seem to be a health-conscious bunch, involved in all sorts of active pursuits, and mostly in mainstream settings, though of course it makes sense to have an assessment to check that any new activity is going to be suitable for you.

D (aged 17) goes to a local gym where he exercises and uses the pool and steam room. The physiotherapist visited the gym with us at first and helped advise what D should and shouldn’t do. This was a great help as I and the gym instructors had him on things like the cross trainer to try to get both sides working but the physio said never to use this for D and to use machines that strengthen his centre rather than try for co-ordination.

Looking at the survey results, the most popular activities among our members are things like cycling, swimming, and exercising at the gym, which exercise muscles without putting too much strain on joints, and where each person can find their own level.

I swim competitively at national and international level through British Swimming. My aim is to compete at 2012 Paralympics.

I can swim and enjoy it. I am a very slow swimmer and can only really do backstrokes (a bit dangerous in a crowded pool!) or doggy paddle (not the most elegant or rapid of strokes!) but I don’t care really, it’s all a bit of fun!

I have a trike and it’s great, I love it, out every day in an attempt to exercise muscles I haven’t exercised in about 5 years due to rebellion against physio in my teens. I’ve been told to watch out for arthritis because of my hemiplegia but also because it runs in the family.

The gym that I go to is very expensive, but it’s the best one for me as it’s safe for me to go on my own. I can’t go to any of the local pools without having someone with me (as I’m prone to falling etc). With regards to swimming ... see if you can go to a warmish pool or hydro pool for a swim. Or see if you can sit in a spa as that really does help a lot ... well it does me!

Some members enjoy activities such as yoga and Pilates, which develop flexibility and strengthen core muscles in the body, and at least two members of HemiHelp swear by ballet as a way of to developing balance and coordination (what’s more, only one of them is female).

I had ballet lessons for four years as a child. I took it up again when I was 20, and have been taking lessons ever since and took several exams (with special allowances). I find dance a great form of physiotherapy and all rounder.

One thing that I do to 1) improve my balance 2) Help my back strength 3) Help with strength overall is Pilates. I started it as part of my physio for back problems but have adapted some of the exercises to suit me and I still do them daily. There are many different exercises so you are bound to find ones that are suitable for you and you can adapt them in many different ways. It also is really good for improving balance as I don’t fall over or walk into things as much as I used to.

Obviously some people are more impaired by their hemiplegia than others, but the list of sports and activities mentioned in the survey suggests that most people can find something where they can enjoy themselves and stay fit at the same time. Among those mentioned were skiing, golf, bowls, rowing, riding, ballroom dancing, scuba diving, fencing, football, cricket, netball, aqua aerobics, judo, karate, kayaking and canoeing. And if you feel competitive, disability sport is a growth area, boosted by the success of the GB Squad, including several HemiHelp members, in football, swimming, riding and cycling at the 2008 Beijing Paralympics.

When I was 9 years old I joined a local football team. Although I loved football I wasn’t as good as everybody else and I left after 6 months. I unfortunately have never returned to football since, but in recent years I have found running to be just as effective. I also enjoy swimming.

Trampolining has helped me by keeping me active, helping me coordinate my body including my affected side in order to be able to do specific moves and allows me to work towards mastering more complicated moves in the long run. It is also a really fun way to keep fit!

I play bowls for Cerebral Palsy Sport - represent my country. I also play tennis and cricket.

After sitting for many a weeks watching my son doing his Shitoryu Karate High Blocks, Low Blocks, Round Kicks and so on… wanting to have a go myself, I decided to have a word with his sensei to talk about the ins and outs and how it would affect my hemiplegia. The sensei said that it would be a good idea as it can loosen the joints and help the muscles relax and we would take it step by step. If there was something that I couldn’t cope with the sensei would try and see it another way to help me. I may have taken longer than the rest of the group but I am now a Red Belt going for my Yellow.

Keeping fit doesn’t have to mean going out of your way to a gym or a sports pitch. Some of our members find everyday activity will do just as well, whether walking to the next bus stop or clubbing the night away.

I walk, a lot. When I’m feeling particularly energetic I walk up and down stairs to build up my stamina. At university there are lots of staircases so I can do that quite easily without drawing attention to myself. I’ll stand slightly back on the bottom step so that my toes are touching the step. I’ll then put my weight through my heels so that the tendon in the back of my leg is stretched. If I’m ever queuing or waiting for something I’ll discreetly find a curb to do the same, no-one really notices or cares.

Now I am at university I cycle everywhere. I spent part of the summer working for a conference company, and was soon “designated cyclist” for couriering info round the site as I was seen as the most proficient and fastest cyclist in the team! I think my balance has improved over the years as my leg(s) has/have gained in muscle mass.

And of course in this era of hi-tech, some people also keep fit in front of the computer.

I have a Wii Fit. It’s great. I had difficulty with the yoga (like standing on my right foot and bending my left leg back) so had to hold onto a bookcase or something steady. I was cr*p at the skiing and hula hooping but still really enjoyed it and I also enjoyed the jogging. Even though I don’t feel the balance game has improved my balance I still really enjoy it. If you want to try something to improve your arm strength, play boxing on the Nintendo Wii with the wrist/ankle weights on. You will break a HUGE sweat doing it, and as with most games on the Wii it’s absolutely HILARIOUS.

Useful Addresses

Contact your Local Authority for activities in your area. It may also have a scheme giving disabled people concessionary rates for local pools, leisure centres and sports facilities. Often this depends on getting DLA, but you can also ask your GP to refer you on medical grounds.

General Sports Bodies

Parasport www.parasport.org.uk Tel: 020 7842 5789 Email: info@parasport.org.uk has contact details for all sport bodies in the UK, both national and local, which provide opportunities for people with disabilities.

English Federation of Disability Sport www.efds.co.uk Tel: 01509 227 750 Email: federation@efds.co.uk The EFDS is the national federation for all those organisations which represent disabled people in sport in England. It has a regional manager in each of the ten regions of England who co-ordinates sports provision for people with a disability in that region.

The Federation of Disability Sport Wales www.disabilitysportwales.org Tel: 0845 846 0021 Email: office@fdsw.org.uk Scottish Disability Sport www.scottishdisabilitysport.comTel: 0131 317 1130 Email: admin@scottishdisabilitysport.com

Disability Sports NI www.dsni.co.uk Tel: 02890 387 062 Email: email@dsni.co.uk

Cerebral Palsy Sport (CP Sport) www.cpsport.org Tel: 0115 925 7027, Email: info@cpsport.org This organisation covers England and Wales and arranges national and regional events in various sports including athletics, swimming, football, table cricket and many others. In addition, they can help you find sports groups in your local area that will cater for your needs. Sportability www.sportability.org.uk Tel: 020 8959 0089 Email: info@sportability.org.uk

Sportability is a charity dedicated to people with disabilities. They arrange year-round activities including archery, canoeing, falconry, fishing etc. They cater for people over the age of 12 and only cover England at present, being particularly active in the Midlands. Ableize www.ableize.com/recreation-sports is the sports page of this online disability directory, which can help you find activities in your area.

Athletics

Special Olympics Great Britain (SOGB) www.sogb.org.uk Tel: 020 7247 8891 This organisation is a provider of sporting opportunities for people with a learning disability. Their five most popular sports are athletics, swimming, football, gymnastics and bowls, amongst a variety of other activities including winter sports. They have local branches throughout England, Scotland and Wales and accept people of any ability from age 8 upwards. Contact them for more information on activities and clubs in your local area.

Cycling

See HemiHelp’s Cycling sheet for general information. For competitive cycling go to: British Cycling http://new.britishcycling.org.uk/disability Tel: 0161 274 2021 Email:disability@britishcycling.org.uk

Dance

International Dance Teachers’ Association www.idta.co.uk Tel: 01273 685 652 For all types of dance. Click on ‘Where Can I Learn to Dance?’ or phone for a list of dance schools.

Football

Disability Football: www.disabilityfootball.co.uk is a directory of disability football clubs in England, Scotland and Wales. Tel: 01423 867 748 Email: marksummers@btinternet.com

Scotland: www.scottishfa.co.uk/scottish_football.cfm?page=609 Tel: 0141 616 6000 Email: info@socottishfa.co.uk

N Ireland: www.irishfa.com/grassroots/disability-football Tel: 02890 669 559 Email: acrooks@irishfa.com

Wales: http://tinyurl.com/bsj955y Tel: 01443 844 113 Email: info@welshfootballtrust.org.uk

Gymnastics & exercise programmes

British Gymnastics www.british-gymnastics.org >disabilities Tel: 0845 1297129 Email:information@british-gymnastics.org for details of local clubs

Different Strokes www.differentstrokes.co.uk, Tel: 0845 130 7172 with branches around the UK, is run by younger stroke survivors for younger stroke survivors, for active self help and mutual support. Their exercise classes will welcome all HemiHelp members.

Horse Riding

Riding for the Disabled Association (RDA) http://tinyurl.com/blhek2pTel: 0845 658 1082 Email: info@rda.org.uk. This website provides a list of contact details by region (including Northern Ireland) with a list of links and telephone numbers to some of the county or local groups.

Handy Tips: Using a toggle on the rein of the affected arm to hold onto can help. The toggle is just a piece of smooth wood, much like a coat toggle, with a slit in it for the rein. This can be kept in place with the small rubber rings (for example those used with martingales).

Martial Arts

Disability Martial Arts Association www.disabilitymartialartsassociation.co.ukTel: 0208 245 2383. Contact them by phone or email from the website for information on local clubs.

Pilates

www.pilatesfoundation.com Tel: 020 7033 0078 Email: admin@pilatesfoundation.com This is the governing body for Pilates in the UK. They don’t run any classes for disabled people as such, and suggest entering your postcode in the ‘Class Finder’ section of the website and contacting your local teacher or centre.

Swimming

British Swimming/Amateur Swimming Association (ASA) www.britishswimming.org Tel: 01625 440 434 Email: disability@swimming.org British Swimming/ASA is the English national governing body for swimming, with 1,600 affiliated swimming clubs which teach swimming and stroke improvement. To find local contact details for each region on the website, Links ► Swimming>County Associations.

SASA (Scotland)www.scottishswimming.com Tel: 01786 466 520, Email: p.wilson@scottishswimming.com

WASA (Wales) Tel: 01792 513 636

N Ireland contact DSNI (see above)

Halliwick Association of Swimming Therapy www.halliwick.org.uk Email: patrick.hastings@internet.com This is a national association with local affiliated swimming clubs and groups throughout the UK providing a specialised one-to-one programme to teach disabled people swimming and water skills.

Handy Tips: Most local pools offer either one-to-one swimming lessons or small group lessons. Also look out for the Swim 21 logo as this means the pool caters for disabled swimmers.

Snow Sports

NB You need to declare your hemiplegia when buying insurance. HemiHelp’s leaflet on holidays & travel lists companies that will insure you.

British Ski Club for the Disabled www.bscd.org.uk Contact your local centre: http://www.bscd.org.uk/centers.htm This organisation caters for people of any age or ability who wish to ski. For details of regions and local clubs phone or email Liz Philpott.

Disability Snowsport UK www.disabilitysnowsport.org.uk Tel: 07980 691 372 Email: info@ski2freedom.com This organisation caters for people of any age or ability who wish to practice snow sports, including skiing and snowboarding. For local groups contact them by phone or email them via the website.

The Ski 2 Freedom Foundation www.ski2freedom.com Tel: 0844 855 2303 The Ski 2 Freedom Foundation is non-profit making organisation launched to help people with disabilities enjoy access to all winter sports. You can download The Ski 2 Freedom Guide to Snowsport and Mountain Activities for Disability and Special Needs from their site.

Tennis

The Tennis Foundation www.tennisfoundation.org.uk Tel: 0845 872 0522 Email: disabilitytennis@tennisfoundation.org.uk This is a charity that works in association with the Lawn Tennis Association, helping to develop the game. They provide information on various disability tennis programmes and can help you to find a club in your area.

Water Sports

British Disabled Water Ski Association (BDWSA) http://bdwsa.org Tel: 01784 483 664 Email: info@bdwsa.org Click on Regions for for a list of local contact details (Scotland and England only).

Heron Lake also has a residential block for longer stays at the lake.

Royal Yachting Association (RYA) Sailability www.rya.org.uk/sailability Tel: 0844 556 9550 Email: sailability@rya.org.uk Sailability is a volunteer based organisation (part of a world-wide network) which covers England, Scotland, Wales and Northern Ireland. Click on ‘Where’s my Nearest?’ to find details of clubs in your area.

Yoga

The British Wheel of Yoga is the national governing body – go towww.bwy.org.uk/instructor/find.htm Tel: 01529 306 851 Email: office@bwy.org.uk and enter your postcode to find local teachers. There are various forms of yoga taught in the UK, some more suitable for people with hemiplegia than others. Different classes will have a different emphasis – some being more physical, some focusing more on relaxation, breath work and meditation. They suggest speaking to a teacher about their approach before you sign up for a class.

Iyengar Yoga www.iyengaryoga.org.uk Email: admin@iyengaryoga.org.uk is one of the most widely taught forms of yoga in the UK. They suggest you tick the ‘Remedial’ box when you search for a local teacher on their site, and if your hemiplegia is more severe restrict your search to teachers at the Senior Intermediate level. For those of you who would like to work out (at a gym or at home) HemiHelp will soon have an information sheet suggesting suitable exercises to benefit different parts of the body.

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