'Managing Rehab...'with Dr Annie McCluskey

[BBrenda]

Hi Annie,
Why is it that pyshosocial rehab is less valued and less available than physical rehab? - it is also less understood.
I am higher functioning - physically you can not tell I have experienced stroke. I have returned to work and to study through uni, and been very sucessful at uni.
However, socially I struggle. Due to fatigue I struggle with energy to enable socialization (both cognitively and physically after hours). I also don't quite know how to successfully, in a sustained manner, move friendships from structured settings (eg work/uni) to non-structured, informal relaxed friendships, especially with mainstream people who may find stroke in me harder to understand. It just seems really hard, and yet I so need to build accepting understanding friendships. Its like there is a void that I can't quite bridge, I just feel awkward, and yet people can't seem to understand this - and things relating to the economy such as employment/study are generally prioritized in rehab over socialization. I also feel self-conscious attending non-structured environments amongst people who I do not know - it feels overwhelming.
What would you advise, Annie?

[BBrenda]

Hi Annie, I thought of another couple of brief questions today.

If one has experienced hypoxia with stroke, is it possible or rather why would they experience a sense of needing more air/oxygen irregularly on the odd occasion?

My second question, I thought I'd play devil's advocate with as I don't know others will necessary have the courage to ask - so I'll keep the question open and general to inform us all:
What are some of the common challenges re sex following stroke, and how can these best be managed?

Thanks for you time on 'Ask and Expert'.

[jmack]

Hi Annie
I'm wondering if you have any ideas about managing rehabiliation if someone is also experiencing depression?
Cheers
J

[emma]

In our recent 'Ask an Expert' forum Dr Annie McCluskey explored with us 'Managing rehabilitation after leaving hospital' and below are her responses.Thank you all for joining and asking your questions in the Ask an Expert forum. Please visit viewtopic.php?f=231&t=1879 to see all the questions in full.

Please note that the questions have been presented so that it is easy for you and the StrokeConnect online community to understand. If you have any questions about the forum or queries about the answers please contact us through the forum, using the green ‘talk to us’ button in the menu.

1. Should the same social worker be involved in both the survivor and carer’s rehabilitation? Does it lead to conflict for the social worker, and also between the stroke survivor and carer?(Ubob)

A: I spoke to a social worker before answering this question, and she said no, it doesn’t cause conflict for her. She also noted that it’s unlikely there will be more than one social worker on each ward, so the same professional will see both people. This arrangement does not usually seem to cause conflict between the person and carers/relatives. Family members can ask to see another social worker, but in reality there is usually only one social worker per ward in most public and private hospitals.

The stroke ‘patient’ (the term used in hospital settings) is the primary focus, and the person receiving advice and help to make decisions about discharge planning and other matters.

Sometimes conflict arises when the survivor has cognitive or communication problems, and has difficulty making decisions. When that happens, a family conference is held.

When individuals are seeing the same social worker, these individual sessions are confidential.

2. Is feeling unmotivated normal after stroke? (frances)

A: Yes, lacking motivation to continue with rehab can be difficult and is common. Its hard to keep practicing, especially if you aren’t seeing much progress, or you’re working on your own. Whether you are working alone or involved in a formal rehabilitation program, there are strategies that may help you to stay focused.

One strategy is to write a few goals. These goals may be short, medium or long-term. Here are a few examples of goals: “To return to driving by the end of the year”, “Walk to and from the park by Xmas”, and “Get back to swimming this year”. Longer term goals might include: ”Go to Thailand for a holiday next year” or “Run in the city-to-surf in 2 years”. Having goals will help you with a sense of achievement the closer you get to that goal.

Another strategy is to set milestones and targets within your goal. For example, use a timer and record how many minutes it takes you to get dressed in the morning, or walk to the park. Then you can increase your speed, and see evidence of improvement over weeks or months.

Another motivator is keeping videoclips of your performance over time (eg on your mobile phone) because improvements can be slow and hard to see. Record your speech, your hand function or walking on your phone, or a friends phone. Then you can review changes over time. Ask your therapist or a family member to help you with the videos.

Discussions on StrokeConnect Online is also a good place to seek help with motivation.

3. I don’t do formal rehab anymore. I can’t just put aside time for exercises and brain training – that has to fit in with everyday stuff like going to work. Does ‘just getting with life” count as rehab? (heathber)

Yes, ‘life’ definitely does count as rehab! In fact ‘life’ presents many interesting challenges that often become your ‘goals’. We know that stroke survivors are not usually involved in formal rehabilitation a year after their hospital discharge, but ‘life’ presents many new challenges. Preferred roles and activities inevitably change after a stroke, but walking and daily life routines certainly count as part of rehabilitation and part of your recovery.

4. “I walk a lot but when I get tired, I get ‘footdrop’ (my stroke was five years ago). Any suggestions for preventing/reducing foot drop? (smitty)

A: I spoke to a physiotherapist to help answer this question. He encouraged you to seek independent advice about footdrop, particularly the potential for muscle strengthening.

First, you may be able to strengthen the (dorsiflexor) muscles on the front of your leg. These muscles help lift your toes up and stop you tripping when you get tired. Make an appointment with a physiotherapist. Even if you tried strengthening muscles early after your stroke, improvements can be achieved after many years.

Another suggestion is to look for exercise ideas on the free website ‘www.physiotherapyexercises.com’.

Third, a plastic shoe splint or ‘AFO’ (ankle foot orthosis) might be useful, if strengthening is not possible. Years ago, metal callipers were used to overcome a footdrop, and stop the toes from dragging and tripping a person. Plastic shoe splints of AFOs are the modern equivalent. An expensive commercial device known as ‘Bioness’ or ‘NESS L 300’ is also available for trial and purchase by people with private funds (http://www.bioness.com). The device delivers programmed, low-level electrical stimulation to strengthen muscles that lift your foot.

Finally, you need to be alert to the risk of injury when you’re tired and have a footdrop. If fatigue is a problem, plan your activities to minimise the risk of falling and hurting yourself.

5. What exercises do you suggest for managing spasticity in the hand?(smitty)

A: This will depend on how spasticity is affecting your arm.

If the spasticity is mild, and you have some active muscle movement, an occupational therapist or physiotherapist can recommend specific exercises. The purpose of muscle training exercises is to turn the activity level ‘down’ in some muscles such as your biceps, and ‘up’ in other opposing, weaker muscles. If spasticity is severe and you cannot open your hand, muscle training may or may not be feasible.

Injection of botulinum toxin (‘botox’) to the spastic muscle or muscles is another treatment to consider, and one which is recommended in the 2010 national stroke guidelines. Botulinum toxin injections are a temporary and expensive procedure which aims to relax muscles for a period of 3-4 months, during which time muscle training with a therapist may help to improve your function. Clear therapy goals should be set prior to injections, so that you know if your hand function has improved after 3-4 months. There is little point in receiving an injection without regular occupational therapy or physiotherapy to improve muscle control and function.

While four injections are available free on the Pharmaceutical Benefits Scheme to eligible people who meet certain criteria, you will be personally liable for ongoing costs if you want to receive ongoing injections. We also do not know the longer term effects of the drug.

Electrical stimulation used on opposing weaker muscles may also be worthwhile trying.

6. Is there anything you can suggest for managing feeling loss in the hand?(smitty)

A: Yes, there is a small but growing body of research on recovery of sensation, sensory rehabilitation and retraining. A recent 2010 Cochrane review summarised 13 trials, but found insufficient evidence to reach conclusions about the effects of specific treatments. However, three studies provided preliminary evidence about the effects of some treatments (a) mirror therapy which may improve light touch, pressure and temperature pain; (b) a thermal stimulation intervention which may improve recovery of sensation; and (c) intermittent pneumatic compression which may improve touch and joint position sensation. The Cochrane consumer summary can be found at: http://summaries.cochrane.org/CD006331/ ... ter-stroke.

Recent studies have been testing the effect of electrical stimulation on recovery of sensation, and we await results of these studies.

There has also been a suggestion that therapies where the person is more “active” (where you use your hand and need to pay more attention to what your hand is doing) may be more effective than ‘passive’ treatments (where your hand receives treatment, such as being stimulated or stroked).

An ‘active’ program was recently tested and shown to be effective by Australian occupational therapy researcher Leaanne Carey. This trial was published in 2011, and found that 4 weeks of individual sensory discrimination training produced clinically important changes in upper limb sensation after stroke. Training involved 10 sessions of 1 hour duration, 3 times a week with a therapist. One third of each session was divided equally between training of texture discrimination (rough/smooth fabrics, sandpaper etc) with discussion and feedback, limb position sense (working out what position your wrist and forearm were in) followed by discussion and feedback) and tactile object recognition (feeling and learning to recognise an object by the shape, feel and weight) again with discussion and feedback. Graded progression of discriminations was used from easy to difficult. Improvements in sensation were greater for the trained group (compared to a control group), and gains were maintained at 6 weeks and 6 months. While this training program or protocol is not yet routinely available, you could use the principles yourself at home.

7. What do you think of HBOT (Hyperbaric Oxygen Treatment) as a help to rehab? (smitty)

A: Hyperbaric oxygen therapy (HBOT) has to my knowledge mainly been used in acute stroke – immediately after admission to hospital – to help reduce the size of the brain lesion and brain swelling, thereby helping to improve outcomes. There have been suggestions that over-oxygenating the vulnerable brain could be more harmful than beneficial. HBOT involves placing a person, usually after an acute stroke in an air-tight chamber or room, increasing the pressure within that chamber, and administering 100% oxygen during breathing. Typically, treatments involve pressurization for 1-2 hours, once or twice daily, so the treatment is expensive.

A recent 2009 Cochrane review summarised the results of 6 trials, all involving acute stroke patients. HBOT did not improve patient outcomes when used during the acute presentation after a stroke. There were no significant differences in deaths at 6 months in those receiving HBOT compared with the control group. Although these findings are insufficient to provide clear guidelines for practice, the possibility of clinical benefit has not been excluded.

The Cochrane consumer summary can be found at http://summaries.cochrane.org/CD004954/ ... mic-stroke.

I was unable to find any studies which tested the effect of HBOT during rehabilitation.

8. Can a partner be involved in another’s rehab? If so, how can they be involved and do the right things?(JanineC)

A: Yes a partner can be involved, and I’m sorry you had to ask. Partner involvement should be, and often is, actively encouraged during rehabilitation. In fact, family involvement has recently been shown to improve rehabilitation outcomes in one study. A 2011 trial conducted in Ireland tested the effect of formal input from family members (the FAME group), where inpatients received routine physiotherapy plus additional lower limb FAME therapy delivered by a family member. This extra therapy was delivered by a nominated family member for 35 minutes daily at the bedside, in hospital or at home for 8 weeks. Family members received training beforehand from the physiotherapists, and practice focussed on strength training and walking speed. Family members recorded practice and repetitions. Stroke survivors who received extra therapy provided by family could walk further on a walking test after the FAME program, and caregivers reported less strain.


A partner or family member can help with other physical exercises, and with talking or communication practice. The 2010 national stroke guidelines recommend that inpatients should be assisted to practice with the help of family members, if appropriate, and continue to practice skills they learn in therapy sessions throughout the remainder of the day.

Partners and other interested people can also participate in helping people set (and achieve) short, medium and long-term goals. Partners can record, time and even video exercises so that there is a record of change and improvement.
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9. Why is psychosocial rehab less valued and less available than physical rehab? (BBrenda)

A: ‘Psychosocial rehab’ includes interventions which help you to manage changed behaviour and reactions to a stroke. Therapists and teams sometimes focus more on physical outcomes, with less focus on psychological rehabilitation. There is less research in this area but we are getting better at recognising the psychological and social effects of stroke on your life. The 2010 NSF Clinical Guidelines for stroke discuss fatigue and how to manage fatigue, and other non-physical effects of stroke such as depression. You can find the guidelines at http://www.strokefoundation.com.au or call StrokeLine 1800 STROKE (787 653).

10. What are your thoughts on managing fatigue to ensure there’s enough energy to maintain a balanced life?(BBrenda)

A: Fatigue is a major problem for many stroke survivors. The NSF provides a fact sheet about managing fatigue. Excessive rest and sleep during the day is not recommended. Aim to establish routine exercise and healthy sleep patterns (avoid sleeping a lot during the day, with disruption to sleep at night). Avoid overusing alcohol which will make you drowsy. You probably already know what routines work for you, and structure activities to suit your energy levels at different times of the day. For example, if you have more energy in the morning, schedule your day so that enjoyable activities occur then. Do what you must do or what you enjoy most before the energy drains. If you need or want to spend time with children or grandchildren, or do the shopping, plan a short rest period and limit activities afterwards, when you may be very tired. Working part-time, if you are able to resume paid work, is probably better on your work-life balance than full-time work if your finances will allow it.

11. What do you suggest for moving friendships from structured settings (eg work/uni) to non-structured, informal relaxed relationships, especially with mainstream people who may find stroke in me harder to understand? (BBrenda)

A: Try to find places where you can go and share an activity with a group, with less pressure to talk such as going to the movies, volunteering or helping at a working bee. Being involved with people where there is a shared activity can take some of the pressure away from “being social” and having to talk.

12. What are your thoughts on how to manage feeling self-conscious and overwhelmed when attending non-structured environments with people you don’t know? (BBrenda)

A: Where possible, prepare for meetings and gatherings. Prepare a few questions that start a conversation, for example, about football teams, what someone did at the weekend, where they live. These general questions might help you feel more in control. Often one question leads to another.

13. What are some of the challenges re sex following stroke, and how can these challenges best be managed? (BBrenda)

A: The NSF has a fact sheet on sex after stroke that you might find useful. You can find this fact sheet at http://strokefoundation.com.au/about/li ... ts&q=#read

A stroke can cause physical and emotional changes, including changes in the way you feel and think about yourself. Sexuality is closely linked with how you see yourself. Your body image and self esteem are important factors affecting your sexuality. After a stroke you may think or feel that you are not attractive to your partner. You may feel sad or depressed and not be interested in giving or receiving affection.

There can be changes in the way you communicate - sometimes the stroke will affect your ability to talk or understand what others are saying. Sharing your thoughts and concerns with a partner is important, but can be challenging if you have communication difficulties.

Stroke may negatively affect a person’s sex life, for example, having less desire for sex, or worrying about performance. Some people worry that sex or an orgasm will trigger another stroke, but this is not true. Problems may be partly due to pre-existing relationship difficulties, medications such as anti-depressants, or medical conditions that cause sexual problems such as diabetes and cardiovascular disease.

In hospital, sex is often a low priority but becomes more important when you get home. Resuming sexual activities alone or with a partner can improve your quality of life, and is worthwhile addressing as part of rehabilitation.

Health professionals may not feel comfortable talking about sex, so look for someone on the team who has time to talk, such as a nurse or therapist. Think about your questions in advance, and ask specific questions.

A UK-based website ‘Health Talk Online’ (http://www.healthtalkonline.org) contains short interviews with stroke survivors talking about sex and the impact of a stroke on their relationship. One woman talks about loss of feeling or sensation on one side of her body. Another man talks about difficulty getting an erection.

http://www.healthtalkonline.org/Nerves_ ... /topicList

14. I’m wondering if you have any ideas about managing rehabilitation if someone is also experiencing depression. (jmack)

A: Yes, there are strategies that can use be used by the person, and/or their family. I have taken information from the NSF fact sheet about depression available at http://strokefoundation.com.au/site/med ... on_web.pdf and a DVD on depression after stroke, which can be obtained from the NSF. For more information about these resources please call StrokeLine 1800 STROKE (787 653).

Up to two thirds of people who have a stroke will experience depression, and this problem is more common in the first year after a stroke. Depression seems to be more common in people who experience dysphasia as a result of a stroke, than those without dysphasia (Dysphasia is difficulty understanding language and talking).

The NSF 2010 clinical guidelines recommend that all stroke survivors should be screened for depression because this mood disorder is so common. Psychological strategies including motivational interviewing can be used to prevent depression, and cognitive behavioural therapy can be used to manage depression when it occurs, as well as anti-depressant medications. These treatments can be provided in hospital, or you can ask your general practitioner for advice and referral to a clinical psychologist.

Depression is not just a low mood, but a serious condition. People with depression find it hard to carry out normal activities and function from day-to-day – which can make participation in rehabilitation difficult. Depression has serious effects on physical as well as mental health. Having a stroke can result in a loss of relationships, independence, work and income, mobility and flexibility. These losses are risk factors for experiencing depression. Stroke impacts on carers, family members and friends who often experience depression as well.

But remember, depression can often go unrecognised and undiagnosed in people who have had a stroke because the two disorders have many symptoms in common such as problems with memory, difficulty controlling emotions, moods and tiredness. Strokes often occur in older people, and depression may be dismissed as being a normal part of ageing, especially if the stroke has affected speech because it can make explaining symptoms more difficult. It’s important to note that depression is not a natural part of ageing and that treatment is available.

Other recommended information please visit the following links;
1) http://www.strokefoundation.com.au/news ... ter-stroke

2) http://www.beyondblue.org.au/index.aspx ... ad&fid=610