Supporting Engagement in Activitiesin people with Huntington's Disease

Engage-HD

ENGAGE-HD

PHYSICAL ACTIVITY WORKBOOKENGAGE-HD study team: Dr Monica Busse, Dr Lori Quinn, Professor Helen Dawes, Dr Carys Jones, Dr Mark Kelly, Professor KerenzaHood, Professor Rhiannon Tudor-Edwards and Professor Anne Rosser.

CONTENTS

SECTION 1 – EXERCISE – WHO ME? 02

SECTION 2 – OVERCOMING CHALLENGES TO GETTING STARTED 04

SECTION 3 – HOW TO BE MORE ACTIVE 09

a. The Activity Triangle 09

b. The Move to Exercise DVD 10

c. Home walking programmes 11

d. Developing a Physical Activity Plan 12

SECTION 4 – GOALS AND TARGETS 15

SECTION 5 – SAFETY AND MONITORING - SOME IMPORTANT INFORMATION 16

SECTION 6 – RECORDING YOUR ACTIVITIES AND PROGRESS 17

SECTION 7- MY PHYSICAL ACTIVITY PLAN 19

SECTION 8 – PLANNING FOR FUTURE ACTIVITIES 20

NOTES 21

USEFUL CONTACTS 24

02

EXERCISE – WHO ME?

SECTION 1

PHYSICAL ACTIVITYAND EXERCISE - WHATARE THEY?

Physical activities are anyactivities that get your bodymoving – these can be thingssuch as gardening, walking thedog, or taking the stairs.

Exercise is a form of physicalactivity that is specifically plannedand structured, for example ridinga stationary bike, doing anexercise DVD or a yoga class.

The aim of the Move to Exerciseprogramme is to encouragepeople with HD, like you, to stayactive – in whatever way thatworks for you.

There are many different waysthat you can be “active”. Forexample, you can be active inshort sessions at different timesthroughout the day. You could alsoset aside specific times of the dayand week to do your “exercises”.

As part of the Move to Exerciseprogramme, we will be asking youwhat is important to you to be ableto be active. We want to work withyou to find what works best for youto start and stay active.

BENEFITS OF REGULARPHYSICAL ACTIVITY

It is well known that regularexercise is good for everyone.Regular physical activity isimportant for both physical andmental health of all adults, not justpeople with neurologicalconditions. By working to stay asactive as possible, you cancontinue to do the things youenjoy for longer.

03

EXERCISE – WHO ME?

SECTION 1

WHAT DO YOU THINK ARE THE BENEFITS OF STAYINGACTIVE?

What other people with HD andtheir carers say:

“…The more I could do,the more I felt likeeveryone else…”

“…What I was just sayingto myself - this is animportant kind of thingand I have to do it. I haveto do it because it can bebeneficial for my balanceand my walking…”

“…I enjoyed the balanceexercises… I’ve seen adifference…they werefun…I think it has helpedwith my balance…Going upand down stairs is easier…before it was one stepand then the next andnow it is better…”

04

OVERCOMING CHALLENGES TO GETTING STARTED

SECTION 2

I AM NOT MOTIVATED TO EXERCISE

Starting and keeping going with anew exercise or physical activityprogramme is not easy for mostpeople, and even more so forpeople with HD. Here are some ofthe things that other people withHD have told us they find difficultand some of our suggestions ofthings that may help.

It is natural for everyone tooccasionally feel unmotivated todo exercise or other things theyknow they really should do. WithHD, this can be a part of thedisease and can be even moredifficult to overcome.

Possible strategies: • Try to set small achievable

targets to be active every day• Consider making your exercise

programme part of a set routine• Keeping a diary/record of your

daily activity may help you tosee your progress

• Ask your friends and family toencourage you or evenexercise with you

What other people with HD andcarers say:

“…When you mention‘exercise’ people will startcoming up with excuses….You just think that’ll behard work…. but thebalance needs to be rightas in keeping it simple,and part of the routine…”

“…We’ve got a book nowthat we’ve put downeverything she achieves…we set her goals togetherand we set a day we’regoing to try and achievesomething new…”

05

OVERCOMING CHALLENGES TO GETTING STARTED

SECTION 2

I AM TOO TIRED TOEXERCISE

Sometimes people with HD feelvery tired or fatigued, even if theyhaven’t done very much. It canseem like it takes a long time toget anything done, and you cantire from doing even simple tasks.Researchers don’t fully understandwhy this happens, but it may bepartly due to excess energydemands from the disease.

Possible strategies: • Work out when you have the

most energy – morning?afternoon? and build yourexercise and physical activityprogramme around that

• Prioritize what really needs tobe done, and do that when youhave the most energy

• Try to adopt a set routine forgoing to bed and waking up,and aim for at least 6-8 hrs ofsleep each night

What other people with HD andtheir carers say:

“…feeling tired is a bit ofa problem but it is aboutmanaging it and havingsome flexibility aroundour routine when thathappens…”

“…Obviously people withHD do have difficulties tostart new activity.However, making physicalactivity part of theroutine would make iteasier to maintain…”

06

OVERCOMING CHALLENGES TO GETTING STARTED

SECTION 2

THE EXERCISES MYCOACH/THERAPIST HASGIVEN ME ARECONFUSING

Many people with HD can havesubtle problems with memory,thinking and planning activities.This can make following anexercise routine a struggle.

Possible strategies: • Ask your coach to help you

find exercises that you like todo, get them to practise moredifficult ones with you and findout what works for you

• It is helpful to start off with justa few exercises and as you getmore confident you can add inmore or do different ones

• Ask another person – such asa friend, spouse, or carer - towatch you as you do theexercises and to help you ifyou have problemsremembering

What other people with HD andcarers have said:

“…I wanted balanceexercises and so weworked it out together. Ifthere was something I didnot like we did not do it.Sometimes we went for awalk outside andsometimes I said I did notwant to do it that dayand we did somethingelse…”

07

OVERCOMING CHALLENGES TO GETTING STARTED

SECTION 2

MY BALANCE IS TOOBAD TO EXERCISE

Balance, coordination andstrength can all be affected inpeople with HD. While some ofthese are directly as a result of thedisease, the problems can bemade worse by lack of activity.Practising activities that challengeyour balance and require strengthand coordination can help you toimprove what you are able to do.

Possible strategies: • Exercise in a safe place –

make sure the room is free ofclutter; keep a chair behindyou or next to you, in case youlose your balance

• Start off by doing exercises oractivities that you feelconfident in doing

• Gradually take on morechallenging tasks or activitiesas you start to find thingseasier

What other people with HD andcarers have said:

“…Start off small andslowly. That’s what it wasit was the slightest littlething like getting up outof the chair… that’s howit started! Small steps to largersteps…”

“…At the beginning shewas worried about fallingover …now the support itis mainly a sort ofencouragement, thestructure…”

08

OVERCOMING CHALLENGES TO GETTING STARTED

SECTION 2

I NEED HELP TO DO THEEXERCISES

Difficulty with balance and lack ofstrength, or just unfamiliarity with atask can affect your confidence inperforming a new task or activity.At first, you may not have theability to perform a new orchallenging task without help orsupervision – this is ok. Carers,friends and family can be a reallyimportant part of a successfulexercise programme for peoplewith HD. If you have someonewho is able to be with you whenyou exercise, this can be verybeneficial.

Possible strategies: • Ask another person – such as

a friend, spouse, or carer – tohelp you do the exercises, orto watch you while you dothem

• It is important that the personyou choose to ask for help willtake the time to listen to you

• Join a club or group wherethere is help nearby – somelocal gyms offer this support

A carer’s view on supportingexercise:

“…An important thing forme was getting to know

her… and understandingwhat works for her…andwhat she liked, that wassort of critical. Now, weenjoy the exercise andactivities together…”

“…I see my role as…enabling her to stayindependent. Not doing itfor her. It’s having thetime, the patience andthe understanding…”

09

SECTION 3

HOW TO BE MORE ACTIVE?

• Try to move more and sit less • Make being active a part of

your routine by findingactivities that you can easily fitinto your daily life

• Think of your time to be activeas a scheduled appointment,and mark it on your calendar.

• Use the activity pyramid tohelp you plan your week

SIT SPARINGLY

Think aboutincorporating

sporting activities thatyou enjoy into your

daily life

Try to do a regular exercise

programme focussed on stretching andstrengthening

• Take extra steps in your day• Take the stairs instead of the lift • Try to go for regular walks

Start your weekly activity plan with the daily activities at the base of the pyramid, Enhance your fitness by choosing other activities on the pyramid. Move more, sit less

EVERYDAY

10

HOW TO BE MORE ACTIVE?

SECTION 3

An exercise programme for people with movement disorders

Developed by: Monica Busse PhD MSCP, Lori Quinn EdD PT,

Karen Jones MSc MSCP, Matthew Townsend MSc

MOVE TO EXERCISE

MOVE TO EXERCISEDVD

The Move to Exercise DVD isdesigned specifically for peoplewith Huntington’s disease. TheDVD has 5 sections: a) Flexibilityand Warm up; b) Balance andcoordination; c) Circuit ResistanceTraining; d) Strengthening; e) Cooldown and relaxation.

There are a range of ways inwhich you could use an exerciseDVD. You and your coach canwork together to decide whichsections are most appropriate foryou and what will work for you.

What other people say aboutusing the Move to Exercise DVD

“…the visual cues of theDVD make it easy to do…”

“…the DVD particularlyhelped me to understandwhat I was supposed tobe doing. I enjoyed it andfeel that it improved mybalance and speed ofwalking…”

11

HOW TO BE MORE ACTIVE?

SECTION 3

HOME WALKINGPROGRAMMES

Going for regular walks is one veryeasy way to be active that you canfit into a regular routine. You canwalk on your own, with a partneror with a group.

We know of one such group thatwas developed specifically forpeople with HD, and incorporateda weekly outdoor walk with thesupport of physiotherapists. Up to15 people walk together, and the

groups are varied in terms ofwalking speed and duration.Regular walking groups may beavailable in your area.

If you already walk regularly, yourcoach will work with you to makesure you are doing the mostappropriate programme forachieving health benefits. If youdo not do any regular walking,your coach can help you todevelop your own targetedwalking programme.

12

DEVELOPING A PHYSICAL ACTIVITY PLAN

SECTION 3

WHAT PHYSICALACTIVITY DO YOU DONOW?

We would like you to think abouthow active you are in and outsideyour home. If you look at thediagram opposite, we want toknow where you spend most ofyour time and how you can bemore active.

Life-Space 0Bedroom

Life-Space 1Home

Life-Space 2Outside house

Life-Space 3Neighborhood

Life-Space 4Town

Life-Space 5Unlimited

13

DEVELOPING A PHYSICAL ACTIVITY PLAN

SECTION 3

WHAT REGULAR PHYSICAL ACTIVITY OR EXERCISE DO YOU DO AT THE MOMENT?

WHAT STOPS YOU FROM DOING REGULAR EXERCISE OR PHYSICAL ACTIVITY? WHAT COULD YOU DO ABOUT THIS?

WHAT MIGHT YOU WANT TO TRY? WOULD YOU CONSIDER BRISK WALKING, GARDENING, DANCING, SWIMMING, CLIMBING STAIRS OR HILLS, OR A SPECIFIC EXERCISE PROGRAMME SUCH AS THE MOVE TO EXERCISE DVD?

14

DEVELOPING A PHYSICAL ACTIVITY PLAN

SECTION 3

15

GOALS AND TARGETS

SECTION 4

MY GOALS TARGET DATEMany people find that having goals towork towards helps to motivate them.This can give you a sense of hopeabout the future especially about thosethings that are most important to you.Thinking about the future may not beeasy for people with HD but goals canbe short term, and can be as simple asfocussing on learning a new activity ortask, or one that you previously did thatyou are struggling to do now. Yourcoach can help you work through somepossible goals and make suggestions.However, it is important that these aregoals that are specific, realistic andmost importantly, meaningful to you.

You can use this section to record yourgoals related to physical activity andwhat you think you can do.

SAFETY AND MONITORING - SOME IMPORTANT INFORMATION

SECTION 5

0 - Nothing at all

1 - Very light

2 - Fairly light

3 - Moderate

4 - Some what hard

5 - Hard

6

7 - Very hard

8

9

10 - Very, very hard

16

If you are concerned pleasediscuss this with your coach.Some days you will be able to domore and some days you won’t beable to do so much, this is normal.If you are not used to exercising itis best to build up gradually. It ispossible that at the start, you maydo more than you should. If thishappens, take a few days of restand work with your coach tomodify your daily activity plan.

If at any time when you areexercising, you feel severely shortof breath or cannot breathe, stopimmediately, rest. Contact yourcoach to discuss this and whatyou should do about your exerciseprogramme. We may ask you tosee your GP for advice.

We recommend that you useBorg’s Scale of PerceivedExertion, which is shown here, tomonitor your activity levels.

• During your activities, youshould aim to achievemoderate to somewhat hardlevels (3-4 on the BORGscale).

• Monitoring how hard your bodyis working can help you adjustthe intensity of your activitylevel.

• You should record your ratingsin the weekly activity diary thataccompanies this book.

BORG RATING SCALEYou should always aim to exercisewithin your own personal ability.

When exercising you may• Feel warm• Possibly have an awareness of

your heart beating faster

You should still • be able to hold a conversation• not feel dizzy or exhausted.

Starting a new physical activity orexercise programme can meanthat you may initially feel somemuscle aching or tiredness afterexercise but this should resolve onits own.

17

RECORDING YOUR ACTIVITIES AND PROGRESS

SECTION 6

An important part of any physicalactivity programme is monitoringwhat you have done. This canserve a few purposes:

• To be sure you are working toyour plan and goals

• To determine if anything is tooeasy or too hard

• To document progress ondifferent exercises or activities

MONITORING YOURACTIVITY USING APEDOMETER

We will give you a pedometer thatcan help you to count and keep arecord of how much you do eachday.

Most inactive people walk lessthan 5,000 steps a day, and somemay only walk 2,000 steps a day.

You should be aiming to graduallyincrease your daily steps. Yourcoach can help you to decide on adaily step count that is realisticand achievable and you can usea diary to record walking activityand any other exercise or physicalactivity. Diaries are useful as theyallow you to see where you havestarted and what you haveachieved over time.

On the following page, we providean example of how you can usethis diary to record your activitiesand daily steps.

http://yamaxx.com/digi/cw_300_e.html

18

RECORDING YOUR ACTIVITIES AND PROGRESS

SECTION 6

EXERCISE DIARIES – EXAMPLE OF HOW TO COMPLETE

DVD

Section

WALKING Pedometer reading (steps)Other activities

COMMENTS(Borg level, how did you feel?)

Other activities

4

4; able to walk a bit quicker

Felt a bit tired after danceclass…maybe a bit too much 3 (walking); felt less tired

today

Date

5/10/14

7/10/14

8/10/14

10/10/14

1

✓

✓

2

✓

✓

3 4

✓5

✓

✓

Total Time(min)

30

20

Distance

1 mile

1 mile

Time

25 min

30 min

Time / reps

45 min

30 min

Activity

5690 steps

Dance class

Raking leaves

19

MY PHYSICAL ACTIVITY PLAN

SECTION 7

HERE IS A PLACE TO RECORD THE DETAILS OF THE PLAN YOU AND YOUR COACH HAVE AGREED ON. YOU SHOULD RECORD THEACTIVITIES, NUMBER OF TIMES PER WEEK, AND ANY OTHER INFORMATION.

20

PLANNING FOR FUTURE ACTIVITIES

SECTION 8

NOW LET US THINK ABOUT OTHER WAYS YOU CAN BUILD REGULAR PHYSICAL ACTIVITY INTO YOUR LIFE.

21

NOTES

22

NOTES

23

NOTES

24

USEFUL CONTACTS

Change4Life is a website thatshares ideas for being active forpeople with a physical or otherdisability. http://www.nhs.uk/change4life/Pages/disability-activities.aspx

The Ramblers supports a range ofschemes across Britain thatprovide regular short and easywalks with trained leaders that areaimed at people who don’t takemuch exercise or who needsupport to stay active. http://www.ramblers.org.uk/what-we-do/promoting-walking/led-walks/health-walks.aspx

NHS Choices Get Fit for Free is awebsite that can help you find outabout new ways and places toexercise for free. http://www.nhs.uk/Livewell/fitness/Pages/free-fitness.aspx

The Conservation VolunteersGreen Gym® is a scheme whichinspires you to improve both yourhealth and the environment at thesame time. Experienced leadersguide you through a range ofpractical projects, giving you theopportunity to tackle physical jobsin the outdoors - improving yourstrength and stamina, boostingyour practical skills andconfidence and benefitting yourlocal green spaces. http://www.tcv.org.uk/greengym

The Huntington’s DiseaseAssociation exists to supportpeople affected by the diseaseand to provide information andadvice to professionals whosetask it is to support Huntington’sdisease families. http://hda.org.uk/

Inclusive Fitness providesaccessible physical activity. Thereare now over 400 IFI Mark facilitiesnationally spread throughout thecountry, equipped with a range ofIFI accredited fitness equipmentwith highly trained gym staff whoare experts in providing advice onadapted physical activity. http://www.efds.co.uk/inclusive_fitness/ifi_gyms

HDBuzz is an internet portal forthe rapid dissemination of high-quality Huntington’s disease (HD)research news to the globalcommunity, written in plainlanguage, by HD clinicians andscientists. It covers laboratory andclinical research, with the aim ofhelping HD people to understandthe latest HD science, on theirown terms.http://en.hdbuzz.net/

Active-HD is the website of theCardiff Physiotherapy group whoconduct research on physicalactivity in HD. www.activehd.co.uk

The European HD Network is aplatform for professionals andpeople affected by HD and theirrelatives to facilitate workingtogether throughout Europe. Itfacilitates natural history studiesand interventional trials meetinghigh standards and all participantsinvolved can take a lead andpropose, conduct and publishstudies.http://www.euro-hd.net/html/network

ACKNOWLEDGEMENTS

This Move to Exercise workbook has been developed by the ENGAGE-HD study team and the Cardiff Physiotherapy Group(www.activehd.co.uk) working in partnership with people with Huntington’s Disease, family members, carers and staff from theHuntington’s Disease Association of England and Wales.

We would like to extend our special thanks to Cath Stanley, Karen Crowder, Jacqueline Peacock, Charles Whaley,Carol Dutton, Mike Cummings, Ann Pathmanaban, Anita Daly, Eve Payler, Heather Thomas, Veena Agarwal, Astrid Burrell andall of the Huntington’s Disease families in Oxford, Cardiff, Liverpool, Plymouth, Dorset and Southampton who attended focusgroups where they shared their experiences of exercise and how they could be best supported to be active with Huntington’sDisease.

We would also like to thank Dr Fiona Jones of Bridges (http://www.bridges-stroke.org.uk/management_group.php) who kindlyworked with us to develop ideas “based on Bridges” that could be applied in this workbook. We also extremely grateful to ourcolleagues, from the EHDN Physiotherapy working group, Jessie van der Bent and Karin Bunnig at the HuntingtoncentreTOPAZ Overduin, for sharing their ideas and successes (including photographs) of conducting regular walking programmesand other activities for people with Huntington’s Disease.

This workbook development is funded by a research fellowship award from the National Institute for Social Care and Health(NISCHR) in Wales.

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