Our last ‘Ask an Expert’ opportunity, a feature of the StrokeConnect Online forum, invited questions about exercise after stroke. Associate Professor Julie Bernhardt, National Stroke Foundation Clinical Council member and specialist in rehabilitation, answered questions on exercise after stroke.

Questions ranged from how to exercise in hospital to how to stave off fatigue. Here is an edited version of the conversation. For the full transcript of Julie’s answers and members’ questions just go to StrokeConnect Online www.strokefoundation.com.au

When the best of my energy goes into my work, how can I exercise to adequate levels?

This is always a tricky issue and not just for people affected by stroke. I would suggest you find a time when you naturally feel energised: morning, lunch time, weekend and start to integrate exercise into your week. Do something that you enjoy – even walking outdoors for a short time and building up to a longer spell would be good.

Why is exercise recommended after stroke to reduce fatigue?

Fatigue is ranked as the sixth top research priority for people affected by stroke according to a recent UK study www.lindalliance.org and it is one of the major problems influencing quality of life after stroke. Right now we don’t really understand enough about what causes fatigue but in recent years researchers are turning their attention to the topic. ‘Brain’ fatigue is probably different to ‘body’ fatigue and fatigue is also related to depression, which is common after stroke. We have no clear evidence that exercise improves fatigue after stroke, but in other areas like chronic fatigue and multiple sclerosis, we know that exercise helps the experience of fatigue.

How essential is daily exercising for 30 minutes?

That prescription is a general healthy habit and one we should all aim for. You can also accumulate your exercise in shorter, more intensive bursts.

How hard does my body have to be working for an activity to be considered exercise?

If you have had a stroke you probably use up more energy doing simple activity than someone who hasn’t had a stroke. If you feel that you have an elevated heart rate and that you are ‘working’ then without any other way of measuring it I would call that exercise. If you want to track it, consider buying yourself an activity monitor to track your activity.

What exercises can I be doing seated or standing if I have poor balance?

You can still do strengthening exercises with weights while seated or lying that can help your fitness if you want to do these at home or in a gym. The National Stroke Foundation has partnered with the Heart Foundation to adapt their Heartmoves exercise program for stroke survivors. You can find out more about Heartmoves for Stroke online at www.heartfoundation.org.au/heartmoves or call 1300 362 787.

What exercise can I be doing in hospital?

Regular walking is probably a good one. The usual problem in hospital is that staff are busy and you don’t want to ask them! If you need help a family member or friend may be able to come with you.

The next Ask an Expert forum topic is ‘fever & swallowing management in stroke care’ with Professor Sandy Middleton. Click on to the StrokeConnect Online forum to be involved and if you haven’t already done so, register – it’s quick and it’s free.

Claire’s question posted on National Stroke Foundation facebook wall:

I had a right parietal ischaemic stroke, mid Oct 2011. I have no deficit, but do have taste changes and pin and needles most of the time in my lower left leg.

I am exhausted most of the time, if I sit down at any time of the day, I fall asleep! Sometimes I drop my children at school and am nodding off driving back home!

Is this normal, 5 months after my small sensory stroke? I am taking Atorvastatin, Perindopril and Assasantin.

I do have major depressive disorder also, but my psychologist and psychiatrist feel I am coping well, considering my diagnosis.

StrokeLine answer:

Fatigue is a common long term problem after stroke affecting up to 16% to 79% of stroke survivors(estimates).

Fatigue post stroke is defined as abnormal fatigue which is characterized by weariness unrelated to previous exertion levels and is usually not resolved by rest.  Normal fatigue, which is a general state of tiredness can be improved with rest. The cause of the fatigue post stroke is uncertain and at present there has been no definitive treatment identified.  (Clinical Guidelines for Stroke Management 2010 – NSF)

At present we recommend ruling out any other cause of fatigue with your doctor, such as a medical condition (such as thyroid conditions, iron levels), medication side effects, or depression as the cause of fatigue.  At present the best advice to cope with fatigue is to try and manage the condition through various strategies.  These strategies may include knowing your limits, planning rest breaks during the day, breaking larger tasks into smaller tasks, prioritising and learning to pace yourself, establishing a good sleep routine, good diet and exercise routine, avoiding sedating drugs and excessive alcohol.  These tips can be found on our factsheet ‘fatigue after stroke’.

More details and tips can also be found on the UK fact sheet ‘tiredness which include keeping a diary and finding practical and emotional support.

It is certainly worthwhile discussing with your doctor to rule out any other cause.  It is not unusual to still be experiencing fatigue months after stroke and for some people, it still may persist years later.

Meet Tamsin, who answers your calls on StrokeLine 1800 787 653. StrokeLine is the National Stroke Foundation’s phone support for stroke survivors, carers and health Professionals.

How long have you been on StrokeLine?
For aprox 8 months.

What is your professional background?
I have a Bachelor of Occupational Therapy and Graduate Diploma in Neurosciences.  I have a variety of experience working in acute hospitals, rehabilitation, regional and metropolitan areas - including stroke care units.

What sorts of questions do you get on StrokeLine?
We get a variety of questions around prevention of stroke, stroke signs and symptoms, treatment of stroke, rehabilitation and recovery, services and supports.

Around 30 per cent of calls relate to prevention – questions about blood pressure, risk factors for stroke, signs of stroke, such as:
“‘do you have to have all the FAST signs of stroke for it to be a stroke?”.

Aprox 20-30 per cent of calls relate to treatment when in hospital:
“I attended Emergency and they sent me home once my symptoms of a transient ischaemic attack had resolved, they gave me a letter for my GP to get an Echocardiogram (heart ultrasound) and carotid Doppler (ultrasound to test blood flow of arteries in the neck) – how urgent is it that I have these tests?”
“we are having a family meeting on Friday to talk about Dad’s discharge plan, what will be discussed?”

Aprox 50-60 of calls relate to recovery, such as:
“is there a stroke support group near me?”
“how do I find a physiotherapist?”
“my mum isn’t coping and dad is crying all the time. What can I do?”

How does it feel when you help people through StrokeLine?
It is very rewarding to try and help people navigate the medical and health system which can be very overwhelming.

Most memorable moment?
Tough question!  There are so many calls each day.  I do like it when people call back to thank me!  There are many sad and happy calls I find it hard to pick one.

Image via pineapplepark.com.au

The StrokeConnect Online Forum is a way for people affected by stroke to connect with others, share advice and to learn more about stroke.

Recently forum members were asked, “If you met a new stroke survivor, what advice would you give them for their future journey?”

These were some of their responses:

• It’s ok to just feel what you feel
• Take improvement from the day after your stroke not the day before
• Don’t just believe what one person tells you. Get many opinions
• People around you don’t “get it”
• Focus on what you can or have achieved not on what is lost
• Extend the physical things you can do by very tiny amounts each day
• Record your achievements and improvements in writing as they happen
• The more questions you ask your doctors and rehabilitation therapists, the better you will be able to focus on your recovery
• Each day look for something positive, bright, or fun (preferably one of each)
• My quality of life is not governed by my physical limitations.

You can join in the discussion by visiting StrokeConnect online forum.

Emma Gee works at the NSF as a Project Officer in the stroke support area. Emma survived a stroke at 24 years of age, this experience, along with her career knowledge as an Occupational Therapist enables Emma to offer a candid and honest view on what it is like for those affected by stroke and how the new StrokeConnect online forum can help.

I understand the support stroke survivors and carers receive following a stroke can assist in the road to recovery. Following my own experience, I am passionate about enhancing stroke support and am committed to growing and fostering a supportive online community with a new NSF initiative called StrokeConnect.

StrokeConnect is an online forum, that provides a safe place to build connections with others who have a similar experience, pose questions, find answers, stimulate new discussions, get information and share stories. It enables people to meet others affected by stroke without having to leave their home.

Throughout my own recovery I’ve had amazing support, but realised it can still be tough.

The prospect of other stroke survivors tackling this journey on their own really scares me. I am so pleased to be part of the StrokeConnect initiative, as it enables everyone involved to feel they have support from others who understand their situation.

StrokeConnect offers support to anyone affected by the aftermath of stroke. For example, I think people underestimate how huge a carer’s role is in any stroke survivors journey, without them we’d be so lost, but StrokeConnect is designed to support them too.

It’s great to hear that other people are dealing with the same problem, just to hop online and vent about a problem and for someone at the other end to really understand.  The fact that we can access this support without getting out of our pjs, facing the bad weather and relying on the support of another to take you out, makes it so much easier for all.

Our aim is that StrokeConnect continues to grow and becomes a valuable and essential element of peer support for stroke survivors, carers and others impacted by stroke.

StrokeConnect can reduce the impact stroke has on so many lives purely by enabling people to share and connect.

I strongly encourage anyone touched by stroke to get online, register and be part of the discussion.

StrokeConnect online can be viewed at http://www.strokefoundation.com.au/strokeconnect/