My Story

Six years ago I suffered a left-sided lacunar stroke. I was just 52. At the time I was a busy registered nurse, mother of three, wife and avid gardener, and in the blink of an eye my world changed for ever.


My husband had just driven me home from work one cold January night, and when I tried to get out of the car, I found I had difficulty putting weight on my right leg. Thinking my leg was asleep from sitting too long, I shook it a few times and hobbled into the house, unworried. A few minutes later I began to feel unwell. My speech was becoming slurred, but I still refused to believe anything was really wrong. So I waited… and waited… and waited. It never occurred to me, nurse that I am, that I was having a stroke. Finally, after a few hours, my worried husband suggested that he should take me to the local emergency department where I was immediately diagnosed with a stroke. But I had delayed just long enough to make it unsafe for the doctors to administer Tissue Plasminogen Activator (TPA) to breakdown the clot. A few hours later I was admitted to a ward, and sometime during the night my stroke extended and I became completely paralyzed on my right side. I was rushed into the intensive care unit where I stayed for a few days until my condition stabilized. A week more in the hospital and I was transferred to a rehabilitation hospital where I was to stay for 3 months and had to learn to walk, talk, eat, dress, and go to the bathroom all over again. I became depressed and in despair. I cried at the drop of a hat. I could not even get myself out of bed and was totally dependent on others. I hated it. That was the black bottom of my life. The journey to recovery had just begun.

After a long very difficult recovery I was discharged home with a four-point cane. My right arm hung uselessly at my side. But I was overjoyed to be back in my own bed at last. Fortunately I live in a bungalow and so was able to shuffle from room to room with relative ease. My wonderful husband and his friend had built a ramp to the back door to make it easier for me to go in and out. We had a standing shower in the basement, and although the stairs were a challenge, I was soon able to bathe myself. My speech was still slurred but getting better. My husband soon felt confident enough with my progress to leave me home alone and return to work. Life was slowly returning to a new normal.

Six weeks later I was referred to community rehabilitation, and it was there that the” new me” began. My depression had lifted a little by then, but was by no means gone, and my right arm had become excruciatingly painful. I had been given the wrong type arm splint and the pain was so bad by then that I walked into the neuro rehab unit weeping and despondent. I was met at the door by a wonderful physiotherapist who identified the problem immediately, and fitted me with an appropriate splint. I was no more that a few meters from the front door.

It was at this point that hope returned. Once I had pain under control, and was placed into the hands of my superlative physiotherapists, occupational therapists, speech therapists and social workers, my life took on new meaning. I could feel myself growing stronger. I had wonderful emotional care as well, and when I fell into despair from time to time, I was helped to see that life could be fine again.

After I had finished my therapy at the neuro rehab, I joined another wonderful program at the cardiac rehab next door where I learned to exercise. Each program was fitted to the individual, and slowly and safely I began to improve my physical fitness which I continue to do this day.

Six years have passed and I can walk 2-3 miles on the treadmill, lift weights, have recovered function in most of my right arm.I belong to several stroke advocacy groups and I’m gardening again almost as much as I once did. I am getting better with every day that passes.Life is good again.

April 7/2012

I was recently interviewed by the March of Dimes for their bi-annual Phoenix Newsletter coming out in June, the Heart and Stroke month. I thought I would share it with you, my fellow thrivers.

Thriving after Your Stroke – What Motivated You?

Toronto, Ontario resident Marilyn Sherman was 52 years old when she had her stroke just over seven years ago.  She was being driven home from work and noticed when getting out of the car that her right leg didn’t seem to be supporting her properly. Even though she had worked as a nurse for over 30 years, like so many, she downplayed her symptoms, and it wasn’t until her speech began to slur that she went to the hospital. Her stroke extended overnight, and when she woke up the next morning, she was completely paralyzed on her right side.

Marilyn spent over a week in the hospital and three months in in-patient rehabilitation. When she was discharged she was using a quad cane, she now only uses a single-point cane when going for longer walks.

Like many survivors, even having been a health care practitioner her entire career, Marilyn found her initial experiences in the hospital setting and rehabilitation discouraging. It wasn’t until she began tertiary, out-patient therapy that she began to perk up and feel hopeful that she could recover and still enjoy a full, meaningful life after her stroke.

Marilyn was pursuing her Masters Degree in Occupational Health before her stroke and although she could not continue her studies, she wanted to use her expertise in the health care field to support fellow survivors. As a result, she began working with the peer support stroke recovery group at her rehab centre. Marilyn wanted to demonstrate to others first hand how far she had come after her stroke, and to offer hope and support.

“I tell people they need to let go of their anger and to try not to dwell on what’s difficult – and I know how hard that can be – I dealt with frustration and depression after my stroke – I never claim it’s easy, it’s not, it’s very hard work and you have to be so determined,” says Marilyn.  “But I know how important it is to get the proper medical support, work with your caregivers and not rely on them – and focus on the positive, incorporating these things into your daily life truly makes the difference.”

As part of her work with her peer support group, Marilyn was constantly searching for articles, resources and information that could be beneficial to her members. She wanted to share what she found more broadly, and so started a blog where she could post what she learned. She has been running http://thestrokethrivers.blogspot.ca/ since 2010, and has been able to reach over 35,000 people worldwide.

“The site is not a typical blog in that I don’t share my opinions often– I do love to write, but the site is a really a depository for information and a forum for others to share their thoughts and stories. Through the site I can reach people one-on-one that I might not be able to meet in person because of distance or geography – and they can connect with others as well,” she says.

In addition to her blog, Marilyn is volunteering with Transition Improvement for Continuity of Care, or TICC, a collaboration of the Ontario Stroke System, North & East GTA Stroke Network, South East Toronto Stroke Network, Toronto West Stroke Network and March of Dimes Canada. TICC is working to improve the continuum of care for stroke survivors in the Greater Toronto Area, and Marilyn is working to include peer support as part of the continuum and to implement a more holistic approach to stroke recovery.

Marilyn finds her stroke recovery motivation in her volunteer work, blog and peer support group.

“Stroke recovery is hard, there is no doubt about that,” Marilyn says. “There will be bumps in the road, physical and emotional challenges, you might find you backslide and it is a fight – but I urge people never to give up – the rewards are so great when you tell yourself, ‘yes I can do it’ – it does get better.”

***

Stroke Recovery Canada® is looking for your story. What motivated you in your stroke recovery journey? What gave you strength? We would like to post your stories on our website and social media properties so that you can connect with, and offer encouragement and hope to, other survivors. Please email your story to gwoticky@marchofdimes.ca. 

 MY NEW TREATMENT

Over the next few months I will undergo botox injections and occupational therapy to improve or regain function in my right hand, elbow and leg. My arm used to hang uselessly, but over the past few years I have regained use of my arm through exercise, nerve growth, and sheer determination. Apparently I’m a late-bloomer-maybe; but I like to think that I’ve had a real influence on regaining strength in my arm through exercise.

 Berta Bobath in her book Adult Hemiplegia (1990) writes that “ Experience has shown that there is in every patient some potential for more highly organized activity. The two-fold question is how to reach this potential and, if reached, what rational potential can be given for it.”*

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 I thought I’d document my progress here so the readers can understand the process of my rehabilitation and share with me the joys and probable frustrations during the course of my treatment.

What I Have Done to Prepare

Since the time of my stroke, I, like many others, had severe hemiplegia, or paralysis of half of my body; in my case the right side.

 

Right-sided hemiplegia most often occurs in right-handed people (and vice-versa) but not exclusively.

 After my stoke my arm was flaccid and drooping, and my right shoulder was extremely painful. I had no muscular tone and the weight of my limb constantly dragged on my shoulder joint. Slowly and surely, with help from my physiotherapists, I trained myself to re-use that arm. With time I was able to lift light weights by placing my fingers around the weight then prying them off the weight when I was done. Now I can lift over 10 lbs and I have been gradually able to regain strength and use of my arm down to the wrist.

Other arm strengthening exercises like pulling on elastic bands might be easier for you.

Cando Loops

Resistance Bands

Thera-Band Extremity Straps

 Attach one end of the resistance band to a post. I have had gripping bars installed on the wall where I exercise. You can tie the extremity strap to the other end of the band and wrap it around your wrist or ankle, then pull.

*All of these items can be purchased from Sammon Preston.

To ensure the best results from exercise therapy consult an occupational or physical therapist.

By the spring of last year I had regained a little movement in my fingers and so I decided to seek more medical assistance.The nervous innervation of the muscles in my fingers has been present for a long time I think; I could always grip, but I had been unable to extend my fingers.This new movement may be the result of having used the Saebo Stretch for a year, I don't know. I went to my GP and asked him for a referral to Physiatrist Dr. Denise Richardson (Physiatry (Fizz – eye – a –tree) is a medical specialty focusing in the areas of Physical Medicine and Rehabilitation Medicine) at the Toronto Rehabilitation Institute who decided I might benefit from some Botox therapy. Remember no one offered me this out of the blue, I had to seek treatment for myself..

IT’S IMPORTANT TO KNOW THAT THE LONGER YOU ARE OUT OF THE SYSTEM, THE MORE LIKELY IT WILL BE UP TO YOU TO EFFECT CHANGE.

How Botox is used in stroke therapy

Botox is a sterile form of purified botulinium neurotoxin type A complex, the same bacterium that bends cans and causes botulism. Botulism can cause paralysis and it is this paralytic function that is harnessed in medical therapy. We have all heard of Boxtox used to smooth out wrinkles in the face by paralyzing facial muscles (thus the frozen look people tend to have after treatment).

 An unfortunate cartoon of Nancy Pelosi after Botox

In stroke patients Botox is used to weaken the muscles of contraction which have overpowered those of extension, thereby causing contractures. Normally contractile muscles are the more powerful of the two. The ensuing weakening of the contractile muscles after Botox is injected gives the poor old extensors a chance to move with less resistance.

Botox is extremely expensive, over $1,000.00 per treatment. With a letter from your physiatrist, most insurance companies will pay the lion’s share of the cost.

The Next Steps

While I waited for the approval from my insurance company I received occupational therapy to loosen up the contractions in my fingers. This included immersing my hand in warm wax (yummy) and stretching exercises which I was to continue at home.

One exercise is spreading your affected fingers over a bowl or ball and leaning forward to add weight to your hand, causing your fingers to splay.

You a can add a little weight from your other hand too by placing it on top of the other palm and straightening the affected arm at the wrist.. I find standing up helps.

This can also be achieved by putting your affected hand beside you while sitting, and leaning your body weight onto it. I don’t have enough finger movement yet to do this.

Stretch can also be achieved by placing your affected fingers around a standing cane and slowly pull them off.

STOP OR LESSEN ANY EXERCISE IF YOU ARE HAVING PAIN.

SAEBO

Saebo is a relatively new treatment used to diminish contractures and help patients regain hand movement. It is an American product and very expensive (The Stretch is around $800.00 and the Flex over $ 1,000.00 U.S.) but has produced good results for some people. There are at least two pieces of equipment to buy and you must see an occupational therapist to see if you’re eligible and to fit you properly if you are. Not every insurance company will pay the cost of a private occupational therapist which is upwards of a $100.00 a visit depending on where you live.

SAEBO DOES NOT WORK FOR EVERYBODY, SO PLEASE DON’T PROCEED WITH UNREALISTIC EXPECTATIONS. EVEN IF YOU HAVE BEEN CONSIDERED FOR TREATMENT IT MAY NOT WORK. BUT IT MIGHT!

Saebo Stretch

I have been wearing The Saebo Stretch 8 hours every night for a year. You won’t necessarily have to wait that long. It’s far more comfortable than the hard plastic splint I was given years ago. The Stretch gently stretches your hand, keeping it supple, and may help neural growth in the hand by increasing the sensory input to your muscles by increasing stretch.

It’s important to keep your hand supple if you can because new technology is being developed all the time, and you want your hand to be ready for treatment.Neurons apparently grow about 1/2" a year.Severe contractures may make treatment impossible and can be very uncomfortable.

The Saebo Flex

This Flex works by helping your fingers open by a spring action, and is best used in conjunction with Botox therapy if you have contractures.

Visit the Saebo Website for more information. http://www.saebo.com/ There you can find a list of local occupational therapists in your area who have been trained to fit the Saebo devices.

* Bobath, B.,(1990)Adult Hemiplegia 3rd Edition. Cornwall:MPG Books Ltd.

May 28/2012

Thought I would share this with you:

http://www.finegardening.com/item/23131/reader-photos-marilyn-and-ians-garden-in-toronto