Recovery from stroke - a personal account
Angus contacted us recently because he wanted to share his story with other survivors, who might find it useful. He isn't on the internet, so we are posting on his behalf.
"Angus is an 84 year old man with atrial fibrillation (AF) and high blood pressure which are under control, and is otherwise reasonably healthy. Prior to his stroke Angus walked unaided, was the only driver in his household and delivered local newspapers. He lived an independent and active life. He is left handed.
On June 13, 2012 Angus felt weak in bed; he got up and took some of his AF pills but collapsed and lost control of his bladder. He called for help and his family organised an ambulance to a major acute hospital.
Angus was seen in Accident and Emergency by triage and had the appropriate neurological assessment and scans which showed he had had a stroke which was caused by a clot in an artery in his brain. The neurological team, after discussion with his family undertook a procedure to disperse any remaining clot. This was successful and he then had extensive tests to document the extent of his stroke, which was assessed as acute.
Angus missed a lot of information due to his stroke e.g. he has no recollection of the tests carried out after his clot busting drugs were administered. LOST INFORMATION This is common in the early stages of a stroke. A neurological physiotherapist identified stroke-caused effects, which are shown in CAPITALS.
Angus will now describe his journey through this major acute hospital, a rehabilitation hospital and a private outpatient clinic and will endeavour to clarify the changes which happened to him as a result of his stroke. Angus will make pertinent points which will be in (brackets) to highlight treatment features which can be improved. Early therapy treatment on affected arms, a standard procedure missed in my case without reason or explanation. THERAPY TREATMENT MISSED.
These experiences could prove helpful to healthcare professionals, care givers and families of those looking after an individual following a stroke. Please bear in mind that this part on Angus' report may have been written a number of months since the initial event.
When I speak directly it will be recorded in italics.
PAIN
After a stroke assessment I was transferred to a critical care bed where I had a painful left leg cramp, which required me to be sedated.
I am not an optimist or a pessimist but a realist, and above all a thinker as evidenced by a university degree majoring in philosophy (logic and ethics) and economics. Lying on a stretcher with my left arm and leg fully paralysed, my fingers tangled, my face drooping and dribbling, my left eye out of focus, my left eyelid unable to close unless my right was also closed, bladder incontinence, I realised that only my thinking was working. I was aware of the concept of a mind trapped in a broken body but I decided that this was not applicable to me (DETERMINATION/SELFISHNESS I realised that I needed determination to cope with my position and that this would imply a large amount of selfishness).
I tried cracking jokes with the senior neurologist but she was not amused so I gave it up. She advised that I would soon be transferred to a recovery ward.
A medical check by a physician discovered-that I had a blood pool on my pelvis. After many CT and MRI type examinations I was advised that this would be absorbed, but they would monitor it closely. The blood was eventually absorbed but the source of the leak was not found.
The team of three neurologists approached and said it was ok for me to go to a general ward and would monitor my progress. I extended my hand to each in turn and thanked them in turn for their help, (FRIENDLY RELATIONS SUPPORTED BY THANKS ARE ALWAYS BENEFICIAL).
My first night I did not sleep at all. At some point through the night a little voice in my head said "I'm happy". Towards morning I looked at my left hand and my third finger moved 2mm of its own accord. HOME AFFAIRS My family had followed me down to this ward and had sorted out wills, power of attorney and access to my DVA pension account. I was now completely free from responsibility for any household money or matters.
A male nurse was putting me to bed and talking to me about stroke. I disagreed with a lot he said as I considered myself an expert. Voices became louder and louder as neither he nor I would change our opinion. I finished up screaming at him and told him to report to his senior nurse that I did not want to see his face near me again. I then calmly went to sleep (FRUSTRATION AT LOSS OF FUNCTION AND INDEPENDENCE This is a common problem following stroke due to increased frustration and grief of loss of function and independence)
In the morning the same nurse appeared and said he had cleared it with his superior and it was ok if he looked after me. That’s qood, I am sorry I lost my temper. I offered my hand which he took and we parted without any ill feeling between us. (DISORGANISED DEPARTURE PROCEDURE. My wife tried to find out where I could go for intensive rehabilitation but there did not seem to be any list of places available. It was a matter of talking to the nurses and admin staff for help.
I was transferred to another ward and started on daily swallowing and drinking water exercises to overcome a STROKE RESTRICTED THROAT - with some success.
LEG PAIN
My upper left leg froze in- bed every night and nurses would not apply or organise any massage. It gradually improved over the next few weeks but SPASM still occurred.
STAFF SHORTAGE/MISTAKE I was transferred to the gym and left waiting on the trolley for someone to give me attention but nothing happened until some hours later when the evening meal was delivered. It was roast lamb with all the trimmings. Not the usual mushy textures I had been provided with. On my second bite I choked and required urgent assistance. After recovering I was transferred to a normal ward bed. I decided not to complain as I did not want to get tied up with the hospital investigations. However I did contract pneumonia after this incident and was acutely ill for a period of time.
STAFF SHORTAGE/DETERMINATION A diabetic patient joined our ward putting extra strain on senior staff. The head nurse did my morning shower routine and left me cold and wet whilst she went to do something for the diabetic patient. I eventually got to my bed and awaited her return. Where have you been? 'I had work to do’ You know you need extra resources to look after diabetic patient. Why didn’t you organise it? 'This takes time and is not easy'. Well from now on I want to be looked after by nurse’s aids in the shower. I felt my tone was firm and finally angry. The next morning nurses aids had taken over showering procedures for all the people on the ward. In the afternoon I was approached by a very small Asian girl in an ill-fitting uniform. "Hello Angus I am here to look after you" That’s good what is your name? I am not very good at remembering names but I will give it a try “It's Min (not her real name), but I have shared it with many others. I have joined the team now and will see you later'. In retrospect I think it was a win win situation. I had a friendly nurse possibly to deter me from complaining, nurse’s aides took over the washing and feeding of patients, freeing up other nurses for proper nursing tasks, particularly the senior nurse who had been dealing with the diabetic.
OPPORTUNITIES
After further health checks I was transferred to a general ward where two physiotherapists approached me, strapped me into a walking machine and assisted me to walk up and down the corridor. A GOAL which I gladly accepted. MISSED OPPORTUNITY At no point was I offered therapy to address my weak left arm, all the focus was on standing and walking. I am now aware that it is imperative after a stroke to receive therapy for the upper limb within two days following a stroke. This was not the case with me (ASK THE TREATING TEAM EARLY WHEN WILL THE THERAPY TREATMENT START ON THE ARM. INSIST ON AN ANSWER. This is a valid point that families need to be aware of and address with the treating team at an early stage in the piece)
One morning the physiotherapists took me for a long walk which included an incline up to the gym. They took the walking machine away and tried to get me walking along a rail. However, I was too tired and collapsed FATIGUE. They dragged me to a bed and raised the code blue alarm. A resuscitation team including three doctors, a number of nurses and other specialists went to work on me and I slowly recovered. There was a semicircle of onlookers facing me. I scanned them quickly and could only discern black hair, blank faces and black clothes. As my vision improved I noticed that there was a gap in the semicircle. I managed to look down and there was little Min (don't always expect compassion) with a worried look on her face, which clearly said I hope poor old Angus is getting better. I resolved to take her by the hand and thank her and assure her I was getting better, but the opportunity never arose.
UNCONTROLLED EMOTION
While waiting to be transferred to a rehabilitation hospital I was wheeled around in a wheelchair by a senior nurse in their training section. I paid a compliment to a junior nurse and had an uncontrollable sob. I now understand that this is quite common with stroke patients and every now and again it has surprised me and happened again, but more of a strangled laugh with tears then a sob so I have to be careful to frame my words in advance before speaking.
After 32 days I was transferred to a rehabilitation hospital. I was fitted with a wheelchair and introduced to their gym. I was surprised at the lack of equipment. In regular sit to stand exercise I fell twice - once being my fault. Progress in walking was slow - no more than a shuffle assisted by two physiotherapists. I wanted to get home and contacted the Department of Veteran's Affairs (DVA) who advised that I was entitled to three weeks with a physiotherapist in a nursing home and then ongoing at home.
CHANGES IN CHARACTER
This is being written after my being discharged from the first two hospitals.
Changes from what and by what? I had a long term position in marketing technical products with responsibility for staff development and planning major projects.
On retirement I wrote two educational books, plus many small educational articles for a number of clients. My character was one of cooperation with a tendency to walk away from serious conflict.
With half my body now paralysed my self-selected DETERMINATION to recover forms a backbone of my changed character. I became more assertive and single minded in dealing only with those people who would help my recovery and overlooking the rest.
I have all the problems of short term memory loss which have certainly been made worse than before. Deep inside me there is still a small boy with a stock of laughter and one liners safe from view. To any detractors of my determination to recover I use the defence of a misunderstood youth in a folk ditty (I'm just a loveable lad).
At the nursing home a physiotherapist approached and said 'Hi Angus, my name is Emma. I am a physiotherapist from a private rehabilitation centre and I will be looking after your recovery'. Her business card said she was a senior neurological physiotherapist which gave me confidence. The next day Emma approached with a quad stick and took me for a walk which went well.
Once at home, Emma visited me three days a week. We then organised for me to attend the Rehab Centre via wheelchair taxi (now a normal taxi). I was pleasantly surprised by the equipment available to me and my progress continued to grow. Also, an occupational therapy group organised safety rails and bathroom and bedroom modifications in the home.
DEPRESSION
Once at home there were many things that could lead to depression.
- Altered appearance. I didn't look in the mirror for months and was concerned about my appearance.
- Difficulty in swallowing often leading to fits of coughing.
- Lack of sleep due to left leg spasm.
An empathetic physio on home visits soon built a bond of trust between us. A frank chat with her kept depression at bay.
RECOVERY PLAN
Exercise programmes were set and improvements checked. Emphasis was placed on designing a home exercise programme for me to complete outside of my sessions with Emma and the gym. The goal was set for me to walk around the house with a stick independently before Christmas - achieved. I now walk freely around the house without a stick. I had a long term goal of walking up the street with a stick within a year- achieved. In mid-September 2013 I walked with a stick around a shopping centre with the occupational therapist. I still have a lot of hard work to do.
The private physio clinic gave me an ideal plan for recovery - my own physiotherapist at home supported by qualified physiotherapists at the gym.
Arm and Hand
Therapy specialists recommend that physiotherapy for upper limb commence within two days after a stroke. This implies that a qualified therapist be part of the stroke management team. This did not happen for me. When I arrived at the private rehabilitation clinic with my left arm virtually paralysed and my fingers tangled, extensive physiotherapy at the gym and at home in conjunction with Botulinum Toxin injections from a specialist Doctor the following improvements were made:
- I can now eat pieces of fruit without help
- I can use scissors
- I can help with food preparation
- I can carry small light objects (empty cups and saucers, remote control)
- I can open and close doors - sliding and swinging
- I can move mobile and light furniture
- My arm is but a shadow of its original capacity
Based on my experience at the private rehabilitation clinic under guidance from a neurological physiotherapist from September 2012 we believe that by following this plan below it sets the speed and extent of RECOVERY.
HOPE is the one thing you need after stroke.
DETERMINATION is needed to keep this plan moving to recovery.
Opportunities: open the way to goals. Determine to - use smallest opportunity
Goals: short and long term, central to recovery. Determine to - concentrate on goals that can be easily met first
Work: professionally structured with multiple repetitions. Determine to - build up limb strength which will be needed to bring goals to fruition
Time: structured and efficient use of time is essential. Determine to - control timetable, set priorities
The total of these elements will lead to RECOVERY
Treat this plan as an occupation by saying e.g., I am recovering from a stroke.
I have an overarching goal to return to as close to my pre-stroke ability as possible.
Some experts think this is nonsense because you will never know when you have reached your goal, but I don't mind, I just keep on working. Time can take care of itself!
P.S. criticism of my goal shows a self-evident lack of understanding of stroke recoverers.
Angus September 2013.
Acknowledgements
National Stroke Foundation - Details of stroke effects from NSF fact sheets and discussions on therapies.
Advance Rehab Centre
3/41 Herbert Street, St Leonards, NSW 2065
Ph: 02 9906 7777
Fax: 02 8001 6163
Management of stroke recovery plan
Recovery Station Occupational Therapy
Suite 106, 506 Miller Street, Cammeray NSW 2062
Ph: 1300 588 8S1
Fax: 1300 522 216
Recovery aids in home. Occupational therapy assistance