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After the stroke

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I was extremely lucky, if one can say ‘lucky’ after having a stroke.

My wonderful partner called 000 and an ambulance rushed me to a local hospital within minutes of the stroke commencing.  I experienced many of the after-effects of a stroke which included poor speech, numbness, tiredness, naps, hiccups, but other than that I had a fairly quick recovery.

Now I understand that not everybody is as fortunate as I was.  Within 2 months of the stroke, I was back at work.  The two months included a week in intensive care at the hospital.  3 weeks in a specialised rehabilitation centre, and regular naps when I first went home.

Now, you may be wondering why I am telling you all this.  I want to tell you about Fatigue After Stroke Syndrome.

Fatigue After Stroke Syndrome

While fatigue symptoms after a stroke are well known and documented (see below), Fatigue After Stroke Syndrome (FASS) is a relatively new development.  What doctors are now thinking, is with advances in modern medicine, patients are getting treated quicker and better and new post-stroke symptoms are appearing, like FASS.

Let me talk about my post-stroke symptoms.  Largely, I live a pretty normal life again.  Other than, numbness in 3 fingers of my right hand, I often forget that I even had a stroke.  I walk, ride my bike, play footy with the kids, eat, drink and life my life.  But every now and then, that would change.  How often, I’d be fine for weeks and then out of the blue.. I’d feel like crap.

Doctor asks; tell me the symptoms.. crap doesn’t help me?  Well, I feel like s**t.  I feel crappy, tired, run down, awful.

Other symptoms: Vomiting, no, Nausea, no, headaches, sometimes,

Read on further down about fatigue symptoms but there were 2 things going on for me.

Wheat Allergy, Coeliac Disease or Gluten Sensitivity

It turned out that I had become gluten intolerant. In the early stages, I didn’t know if I had a Wheat Allergy, Coeliac Disease or Gluten Sensitivity but if I ate bread, biscuits and some other kinds of food, a few hours later I would feel unwell, tired and crappy.  One slice of bread, (snag in bread at Bunnings), 2 slices of toast for breakfast, BBQ Shapes would have the same effect.

A brisk walk, early to bed and the next day I’d feel better again.

Early on, the cause of my fatigue was confused between Fatigue After Stroke Syndrome and Wheat Allergy/Gluten Sensitivity.

I’ve now been tested and do not have Coeliac Disease.

I steer clear of breads except for sourdough bread.

Fatigue Symptoms

Look at the symptoms and triggers of fatigue, and some strategies to minimise and manage it

Fatigue is a common and very disabling symptom experienced by people with Acquired Brain Injury (ABI) or neurological conditions. Some people describe an overwhelming sense of general fatigue that can occur at any time of the day. It happens without warning, and the person needs to rest immediately before the symptoms get worse.

Fatigue is also a problem among carers as they find themselves managing increased workloads and greater responsibilities. Members of the rehabilitation team understand our position and can recommend coping strategies and support services such as respite care. Consult with your GP or a trusted team member before your own health is affected.

What is fatigue?

The fatigue associated with brain injury or neuromuscular damage often appears more suddenly, lasts longer, and takes longer to recover from than ordinary fatigue. Make no mistake; it is real and not a case of mind over matter.

What causes fatigue?

Fatigue can occur for no apparent reason or after relatively mild exertion. It may be caused by physical activity, but is just as likely to occur as a result of mental activity.

Planning the week’s errands, organising a work schedule, calculating a weekly budget or simply reading, can be very draining. We all experience this to some extent, but for the person with a brain injury, it happens more easily and much more frequently.

Fatigue can be managed with good planning and rest periods, but first carers and the family member affected need to acknowledge that it is real.

Symptoms

The following symptoms may all suggest fatigue:

• Withdrawal
• Loss of appetite
• Shortness of breath
• Slower movement and speech
• Short answers, quieter voice, dull tone of voice
• Irritability, anxiety, crying episodes
• Increased forgetfulness
• Lack of motivation to plan for each day
• Lack of interest in things the person normally considers important (e.g. appearance, grooming)

Fatigue also intensifies symptoms experienced because of ABI or neurological condition, such as

• Poor vision
• Slurred speech
• Difficulty finding words
• Poor concentration
• Cramps or weak muscles
• Poor coordination or balance

The next step is to work out what triggers it and what factors make the symptoms worse, such as holding a demanding conversation for more than 10 minutes or watching a film with a complicated plot. You can then work together to develop strategies to conserve energy.

Managing fatigue

Contingency plans: Fatigue may occur at the least convenient times – on public transport or during a meeting. You need to negotiate ways of coping when this happens. You can use specific strategies or call in extra support. Work out contingency plans with your family member. Your physiotherapist can help with suggestions.
Assess your environment: Provide an environment that is easy to move around and work in. Think about how and where things are stored; bench heights, entrances, types of furnishing and lighting. For example some people may find fluorescent lighting or dim lighting more tiring.
Assess best hour: Some people function best in the mornings, so complete demanding tasks then. Others function better in the afternoon or the evening. Organise your routine accordingly.
Schedule rest periods: make a daily or weekly schedule, and include regular rest periods. “Rest” means do nothing at all.
Use aids: Use mechanical aids to conserve energy for when it really counts. One man spared his legs extra effort by using his wheelchair to get from his house to the car, then from the car to the church, before walking his daughter, the bride, down the aisle.
Break it down: Break down activities into a series of smaller tasks. This provides opportunities to rest while allowing the person to complete the task. Encourage sensible shortcuts.
Set priorities: Focus on things that must be done and let others go.
Medication highs and lows: Be aware of changes throughout the day that relate to medication. Is the person better or worse immediately after taking heir tablets? Plan their activities around those times.
Sleep: Encourage a regular sleeping pattern. Some people may also need a regular nap – or two – during the day.
Fitness: Your family member should maintain fitness within their individual ability, that is, enough exercise to stay fit, but never to the point of causing tension, overtiredness or cramps.
Weight: Maintaining a healthy weight helps. If your family member’s condition affects their ability to eat, consult a dietician and speech pathologist to ensure they have a nutritious diet that is easy to manage.
Weather: Hot weather can also increase fatigue. Plan around this.
Seek support: Ask for advice. In particular, an occupational therapist can visit your home and advise on an energy – conserving plan.

For more information, talk to your doctor or condition – specific support organisation.

Thank you to The Brain Injury Association of Queensland for the article in Synapse Bridge Magazine the official journal of BIAQ. This article was first reproduced with the permission of BrainLink, from their excellent brain injury resource available for free download www.brainlink.org.au.

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