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This post replaces the original, published on 2016/05/24

Hi, this is Kathy James founder of ShrinkRap. In 2016 I decided to share my personal experience of stroke, and in particular with The Anat Baniel Method

On December 26th,2015 full of Christmas plumptiousness I arose full of energy and decided to head to my local rec. center to work off some of the excesses of the previous day.

I felt rather sanctimonious as I skipped to my car, thinking how wonderful I was to be making this effort while the surrounding neighborhood seemed quiet, and basked in holiday sleepiness.

There was nothing unusual as drove off that alerted me to what lay ahead.

I was struck by how cold I felt as I started my workout, so much so that I kept my gloves and hoody on! But after 25 minutes or so I was sufficiently warmed up to remove them as I moved into my mat work having completed my initial cardio warm-up.

I suddenly became aware of a slight tingle in my head, and then with some consternation, I began to experience left-sided numbness in my tongue and face. With slight uneasiness, the thought crossed my mind that this was not good, and possibly signs of a stroke. I mentioned this to the fellow working out next to me, he felt reassured knowing me as a regular, that I was just working out a bit too hard, and advised me to take a seat.

Then the numbness started to radiate down my entire left side, I lost my balance and decided to lay down. That is when my fellow gym mates realized that all was not well, and the lifeguards from the pool were summoned and a 911 call was made. Within 30 minutes I was having an MRI which would show that I had suffered a brain bleed in my thalamus. I had indeed suffered a stroke. By this time my husband and children were at my side.

I maintained an eerie sense of calm, oh well I’ve had a stroke I’ll see the neurosurgeon and then go home. It was only when I needed to use the bathroom that I realized I couldn’t move. I was admitted first to the hospital then after 2 weeks there, I was moved to an intensive stroke rehab unit where I would spend the next 8 weeks.

During this time I followed the regime of treatment that was prescribed, I had no energy to research my stroke. I just slept (a lot), and followed the treatment protocols that the doctors there prescribed for me. By the time I was discharged from the hospital I had regained some independence, I was able to walk with a cane and dress myself. But I still lacked sensation in my left hand and had issues with movement in my left arm and shoulder. The left side of my face responds with an unpleasant sensation of tingling in response to hot and cold when eating ( and spicy food), and there are times my head feels as if someone has vacuumed the left side of my brain!

Following discharge, the questions started to come, as did my online research. I wanted answers, and couldn’t find them. Answers that my treating professionals didn’t seem to have, or at least the answers I needed to hear.

I think I was looking for someone who had gone through a similar experience, I wanted to be able to share timelines of recovery, what I could expect, and when would it happen. I still haven’t found this and it is why I decided to share my own experience.

I want to caution anyone reading my account, that I am no medical expert, I am writing this as a personal account of how stroke has affected me, and my journey of recovery.

Close up of woman hands holding a pills.

Credit: istockphoto

As I read back through the posts that I have written over the past year, I recognize that I am not, nor will ever be as passive recipient of treatment.

I need to be in charge, this is my life.

In my initial posts I weaved the tapestry of my recovery, postulating and problem solving, sometimes getting the answers wrong.

What I needed right from the very beginning was someone to sit me down and tell me where I was headed. This simply didn’t happen and stroke turned my life upside down. Through all of this I have become my own clinical reasoner and problem solver.

I have written previously that as a consequence of suffering a thalamic stroke, I now have central post stroke pain (CPSP), this condition affects about 12% of those affected by stroke. It is also known as thalamic syndrome or thalamic pain syndrome, it is a neurological disorder and is extremely difficult to treat. CPSP occurs when there is damage to an area of the brain that carries lots of sensory pathways, no particular type of stroke causes CPSP, rather strokes in particular areas of the brain do.

Pain is huge, and can lead to depression and isolation. It locks you out of life as you know it, and you lose the sense of who you are.

Once I accepted that it (CPSP) was here to stay, I have sought out as much knowledge about what is occurring in my brain, and why my brain is generating the pain response in my body.

I have strengthened my resolve not to go down the rabbit hole, fight tooth and nail, although I must admit I do feel fragile at times.

Sensory overload wreaks havoc and causes pain flares, its almost like my brain has no filter, but as best as I can muster I am trying to treat pain as background noise.

It is easier said than done, to pick yourself up and get on with life.

 
It takes time to adjust, to recover, this is a lesson that took me a long time to understand and accept. It will come as no surprise to those who know me that I have found it very hard to be a passive patient.

Once the CPSP diagnosis was confirmed, I did not become the patient who just took the pills. I keep on looking for answers to all the questions that are difficult to get answered.

Pain, is it all in your head?

Yes it sort of is…. it is not just an “all in the head” problem, but a “strongly affected by the head” problem.

Pain, basically is your brain’s assessment of keeping you safe.

I cannot emphasize the importance of listening to your body enough.
When you have chronic pain you have to experiment with what works for you.

I have approached my pain as a learning experience, I am open to the concept that with education and support change can occur.

In my next post I will share some of the tools and strategies I am using to cope with pain.

“Grant me the serenity to accept the things I cannot change, courage to change the things, I can and wisdom to know the difference”

~ Serenity Prayer, Rheinhold Neiber

Following my stroke just over a year ago, at first I was very much in denial about how this disability was going to affect me– I was, going to be 100% recovered, and yes, I was still going on the trip to Europe that was already scheduled for October 2016 with my husband Owen, and friends. During the months post stroke all the hard work of rehab physio saw me making steady gains, then around 6 -7 months things slowly started to plateau. Owen and I had many a discussion around my ability to walk (without canes) a distance, amongst hoards of tourists … even as late as two weeks prior to leaving he was still questioning how we could possibly go? This just made me even more determined, and sure enough we took the trip… (I also took my walking poles). Many a day we racked up over 10,000 steps sightseeing the wonders of ancient Greece and Turkey. Despite hoards of selfie taking tourists at the Acropolis, I survived to tell the tale. The sunshine worked magic, and all the extra walking was good therapy. Good weather, good food, great company…. it really it was the best therapy.

Ephesus,Turkey, October 2016

Ephesus,Turkey, October 2016

How has my life changed in this past year? Well would you believe I’m no longer skipping to the gym at 6am….ha ha. I am super slow getting up in the morning. Getting dressed takes much longer, putting on socks and pants present quite the challenge, I’ve learned to be creative with how I fasten my bra clasp!

I struggle to use a knife to cut up my food. Owen has become a great chef de cuisine, cooking for me is quite the adventure…. chopping things with a sharp knife frankly dangerous when you have a left hand that doesn’t cooperate. Woe betide random dogs that may be lurking in the kitchen! I’ve been known to virtually concuss said pooch by virtue of spastically launching a stray can of tomatoes!

Everything just takes so much longer and requires so much more effort. If I was a grand procrastinator previously you can only imagine how much worse I am now. Medications mask my ability to be my old self.

I feel like stroke really has aged me. There are times when I feel quite frail and feeble. I get upset from time to time. There is such a sense of loss.

I recently watched the documentary: My Brain and Me, that Andrew Marr the veteran BBC journalist has made about his recovery from stroke. In it Marr talks about how it’s the small things that accumulate and make life a bit crappier than it otherwise would be. It describes in a nutshell how I feel.

I am a different person than I was a year ago, stroke has changed me, and as a changed person living with the consequences of stroke share and reinterpret stroke in the context of my life experiences, personality and character.

As this year has progressed Ive learned that whilst others can support you, you have to become your own expert on stroke.

Despite the consequences of stroke I have not given in, nor given up control of my life. Rather I have started to find a balance between acceptance and change.

We all want to believe when we have a problem in our lives , there is someone or something out there that can fix it. As I read back on my posts this past year… this is very much the recurring theme in my story.

but…

There is no magic bullet cure for stroke.

It takes a toolbox of different things to be healthy

December 14, 2016

I recently read an article by Katie Gibbons in the Times on the role that optimism plays in women’s health, and I just love this particular quote she cites from Eric Kim, research fellow at Harvard department of social and behavioural sciences. “ It takes a toolbox of different things to be healthy and being […]

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