Nisha Mistry, 59 from Calgary, Canada had a hemorrhagic stroke during peak Covid despite being an active and fit person. She shares her experience of recovery and rehabilitation across Canada and India and the strides she has made through her dogged determination and persistence.
1. Please introduce yourself.
My name is Nisha Mistry. I worked Part Time at a Banking Institution and Practiced Reflexology part time. I was eating healthy and an active, healthy individual prior to my stroke walking on average 7-10 Kilometers daily. I know the human body, science, working with patients and different ailments and how to treat them. I was a Certified Reflexologist and practiced what I preached and believed in wellness as a whole.
2. Your initial symptoms, when and action taken. Were these recognized immediately? Did you have any pre-existing condition?
I was not on any medications prior to the stroke. The hemorrhagic stroke came on abruptly as I bought groceries and put them in the trunk of the car. I fell beside the car. Since this was peak Covid time, passersby were reluctant to help. Someone ran into the store to get me help. The store manager brought a chair for me to sit and called 911. I don’t recall how, but I must have given my phone to the stranger to call my husband and he arrived at the same time as the ambulance. When I spoke with my husband on the phone asking him to come to the store I was in, he knew I had suffered a stroke because my speech was slurred.
3. Do you have a family history of this condition?
My Father had high blood pressure and died from complications. My mother survived cancer twice but had no heart issues.
4. The diagnosis: What were you told? When? What was your reaction to the diagnosis?
I did not know what had happened other than the fall, my slurred speech, and my right side wasn’t fully stable. I was rushed into the Emergency room where the doctors stabilized me. I was in the ER for a day before being moved to a recovery ward the next day between CT scans. The only thing we were told was that I had a hemorrhagic stroke. I was in shock as I didn’t know what had happened and why. I was a healthy active individual yet this sudden change was inexplicable. Between the scans on the day of the stroke and the next day the clot had subsided considerably and was no longer a concern for the medical staff at the hospital. Initially I slept a lot and slowly as I regained strength, I began to realise that lying in bed all day isn’t going to help me recover. I needed to get a move on and get active.
5. What was the treatment administered? Was any surgery involved? Did you have any co-morbidities and if so how did it affect your treatment? How long was the hospital stay and did they start the rehab at the hospital?
CT scans determined the extent of the bleed inside the brain. Treatment administered was to stop the bleed and prevent seizures. There was no surgery involved. Once stabilized, I was moved to the Stroke Rehabilitation Unit for 2 months where the recovery continued. I was taught how to roll over from side to side, transfer from bed to the wheel chair, learn how to move with limited mobility. My friends came to the hospital to perform reflexology on me to energize my brain through the feet as well as help me regain strength. Even during my stay at the hospital I was asking the nursing aides to help me walk. I would go to the gym in the wheelchair but once there I would be in a harness and continue to walk slowly on the treadmill, bicycle etc. During the blood work done at the hospital they discovered that I was type 2 diabetic.
I also underwent speech therapy and my speech returned to normal in a few months.
6. How was the discharge experience and what was the support provided post discharge?
The discharge was abrupt and rather awkward, I was told on a Friday that I am being discharged on Monday morning so there was no time for any home modifications. My husband figured out what I needed - bedframe support, toilet seat support, railings outside the house to allow me to hold on to something on the left side as I climbed stairs. I was glad to get out of the hospital as I progressed better at home with support of family and friends.
7. How did the condition and the post stroke disability affect you physically as well as mentally?
Physically, I have had to learn how to walk again. I went from wheel chair to quad cane to single cane to no cane. It took a lot of effort in understanding my own limitations. I am grateful for being pushed to do physiotherapy. That was a test of endurance. I underwent Physiotherapy at a clinic in India where I regained my balance in about a month of 5-6 hours of therapy a day for 6 days a week.
Mentally, the question “why me” kept bothering me. Going from being an active individual to depending on help requires a major adjustment in life. Losing sense of independence in activities like ability to bathe on my own, drive to wherever I needed to go are some of the limitations this stroke has brought about in my life. I still continue to grapple with anger from not being able to understand and accept.
8. What medications are you currently on? Please mention all including supplemental medicines and indications of each. Did you experience any side effects from taking these medications?
My medications include an ace inhibitor for hypertension, metformin for diabetes, a statin for treatment of cholesterol, a beta blocker and a calcium channel blocker. My family doctor monitors me pretty closely and on the rare occasion that I had any side effects like low blood pressure, she would work with me in understanding what changes in medication required and follow it up with BP measurements at home to ensure stability.
9. What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc.) do you consult and how often?
I had consulted with the Physiatrists in Calgary after the stroke. I started to see them almost a year after I had the stroke and continued to see them every 4-6 months either in person or on the phone. I had been working with the Association for Rehabilitation of the Brain Injured for about 4 months and Synaptic in Calgary to assist me with various forms of treatment. My husband then researched the internet for Physiotherapy centers in India. And we decided to check out 2 places of which one was very considerate and accommodating but at the same time amenable to pushing me to the limits of my endurance.
We opted for Rehabilitation in India at Rewalk Advanced Physiotherapy Centre in Ahmedabad. Because I speak English, French and Gujarati, it made sense to go there. During times of stress I cannot think in anything but my mother tongue Gujarati. My husband’s relatives offered us a place to stay and my husband organized caregivers to help me during the stay. I underwent 4-5 hours of therapy 6 days a week from Feb 2023 to July 2023. We did different exercises - strengthening the hips, shoulders, and legs using various techniques. Within a month of intensive therapy I was able to stop using my cane to walk and was able to balance myself although with a limp still become independent.
10. What changes have you made to your lifestyle because of this condition?
If there are specific lifestyle changes that you made – let us know or we will remove this question
11. How do/did you navigate work? What kind of accommodations, if any does/did your employer need to provide
Unfortunately, I wasn’t able to return to work although I had hoped I would. This is another challenge that I am faced with and hope to work through in my journey to recovery.
Being able to share my journey, inspire others that there is hope and recovery is still possible. I am still active and I read a lot.
12. How did you mentally/emotionally cope with it all? Please mention any specific times and issues that were difficult. Did you see a counselor for support?
Coping with the mental and emotional challenges of stroke can be as important as managing the physical aspects of recovery. There are times when I struggle and get easily overcome by emotions. My husband lets me have a good cry and then onward to the next task at hand. Perhaps crying hard is a way to release pent up emotions.
I do see a counsellor for support over the phone and we talk things through on what approaches work for me and what do I need to continue working on and keep going on to smaller accomplishments. After all, Rome wasn’t built in a day.
13. How has your family supported you? What were some of the challenges your family faced and how did they cope?
My illness isn’t me. It is what happened to me and I am not going to let it define what I can do and what I cannot. I am a determined woman and my family gives me the freedom to do what I need to do to recover. I can say that my husband has been the biggest supporter on my journey to recovery. My friends cared for me in different ways. After the stroke I was unable to enjoy foods that I normally liked. I longed for good home cooked meals and so they spoiled me with foods from home as the hospital food was bland, insipid. It also put me off some foods for good due to the smells associated with the foods. I discovered that I cannot tolerate the spice levels I did prior to the stroke. Spicy foods make my mouth become numb and I have to stop eating. Onions in the food do the same. I have not found any explanations on why this is so.
14. What is your present condition? What were some of the challenges you continue to face? Do you have any related worries about the future?
I have made major strides since getting discharged. Recovering from a stroke is like running a marathon one step at a time. I continue to remain optimistic and hopeful. I realize that I cannot control everything and trust that my husband has my back and leave all the worries for him to manage. I am on my journey to recovery and rehabilitation. I read a lot and my recovery journey is aided by YouTube. I have a bunch of videos that I work out to, while sitting on a chair and with the assistance of a caregiver at home. My friend who is a physiotherapist gives me exercises to do that I follow meticulously. My husband has learnt the use of the FES (Functional Electrical Stimulation) device to stimulate the hand and shoulder recovery points and we make sure to have at least a couple of sessions a day.
15. What do you think you learnt in managing your condition that you wished you knew before?
We know so little about our brains and how motor functions are tied to the neural networks. One small blip in the neural network and the impacts can be difficult to gauge, treat and recover from.
The brain needs to be trained to restore order from the chaos. Restoring neuroplasticity is about seizing every moment and making the most. Who knows what the next second may bring me to? The brain is resilient enough that it finds its own neural networks by retraining the mind to do things that are taken for granted by people
Managing Stroke recovery involves a multi-disciplinary approach involving medical management, rehabilitation therapy, assistive devices, lifestyle changes, emotional support counselling, prevention of secondary complications. Essentially you have to “let go of whatever you did before that didn’t work”. Nothing you ever learn will prepare you for dealing with a stroke. No human being prepares to be struck by a lightning. It just happens and you deal with the consequence.
16. What is your advice to patients who face similar challenges?
Remember that everyone's recovery journey is unique, and it's okay to have good days and bad days. By staying positive, proactive, and resilient, you can maximize your potential for recovery and regain a sense of hope and optimism for the future.
- Celebrate Progress – acknowledge small victories
- Set Realistic Goals – setting short term, simple practical goals
- Staying connected – Don’t lock yourself up as the battle within is greater so seek help, try and enjoy whatever life has to offer.
- Focus on abilities: Instead of dwelling on limitations or setbacks, focus on what you can still do and build on those abilities. Adopt a positive attitude and approach challenges with optimism and determination.
- Engage in Enjoyable activities: Engage in activities that bring joy, satisfaction, and fulfillment. Whether it's a hobby, spending time with loved ones, listening to music, or enjoying nature, prioritizing enjoyable activities can boost mood and morale
- Practice Self-Care: Take care of your physical and emotional well-being by prioritizing self-care activities such as exercise, relaxation techniques, mindfulness, adequate sleep, and healthy eating habits.
- Seek Professional Support: If feelings of sadness, anxiety, or hopelessness persist, consider seeking professional support from a counselor, therapist, or psychologist who specializes in stroke recovery or mental health
- Stay Informed: Educate yourself about stroke recovery, rehabilitation strategies, and available resources. Understanding the process and having realistic expectations can help you navigate challenges more effectively
- Stay Patient and Persistent: Recovery from a stroke takes time, patience, and persistence. Be kind to yourself and recognize that progress may not always be linear. Stay committed to your recovery journey, even when faced with obstacles or setbacks.
- Visualize Success: Use visualization techniques to imagine yourself achieving your goals and overcoming challenges. Visualizing success can help reinforce motivation and belief in your ability to recover
Laugh and the whole world will laugh with you. Cry, and you cry alone.
