We’d just come back from a wintry morning walk. Baxter flopped on his chair, paws tucked neatly under his chin. We pulled off snow pants and jackets. Our cheeks were red.
I sat down for a minute, trying to figure out why a fog patch had appeared in the centre of my vision.
Strange. I took off my glasses. There was no foggy spot to be found, and, even with them off, the fog remained. In fact, there was a big greyed-out hole in my field of vision though I could sort of see around the perimeter. I asked Kevin if he could see anything in my left eye. Nope. I held my hand over my right eye. It was there. Held my hand over my left eye. The right eye’s vision was fine.
Maybe a minute or two passed and then the grey sank to cover the bottom half of my sight. And then it morphed into something resembling a film negative, except it was still grey but with beautiful magenta marks and highlights. Finally, the fog sank toward the corner of my eye and, just like that, it was all over. Maybe the whole thing lasted five minutes.
There was no big drama. No startling revelations. It was just some rather strange moments.
And given that Parkinson’s is really all about a random version of whack-a-mole symptoms, I chalked it up to one more stupid moment of dopamine loss.
I’ve had visual disturbances before. I’ve had plenty of aura migraines in my life, but they are always beautiful geometric shimmers full of colour and blinding dazzle. They usually last exactly 45 minutes. I’d had four of them in the last two weeks and found they had been shorter than usual. Best of all, unlike my earlier aura migraines, these ones lately were not accompanied by a headache.
This, though, was definitely different. The auras are always in both eyes. This fog was only in the one eye.
But hey, it was gone. I was fine. And on I went with my day.
However. I’d been cautioned by my doctor not to throw every medical moment onto the Parkinson’s bus, so the next morning hearing her cautionary advice in my head, I did my due diligence and checked online…just in case it wasn’t a Parkinson’s symptom.
Lo and behold, after writing out my description of my experience, the first site said, SEEK IMMEDIATE MEDICAL ATTENTION.
Apparently I had just accurately described a TIA (Transient Ischemic Attack). TIAs are often also called mini-strokes, the first warning of a possible full-blown stroke to come.
Digging further, I found a new Parkinson’s fun fact (I’m so happy to be a lifelong learner, just didn’t know it was all going to be medical shit). Studies consistently show that people with Parkinson’s disease have an increased chance, nearly four times the general population, of having a stroke. While we’re on the topic of random associations…did you know that people with Parkinson’s are more likely to get melanoma?
But surely I digress…
Anyway, I’ll now give you the Readers Digest condensed version of the next events; right after my internet revelation, I got in to see the doctor on call (my doctor wasn’t available until the end of the month), she took down the information and referred me to the TIA clinic, they interviewed me over the phone, then I met them in person and finally met with the internist. In less than a week from when it happened, I was swallowing blood thinners and popping a daily 81 mg aspirin.
The internist told me my cholesterol would be considered within the acceptable range for a ‘normal’ person, but since Parkinson’s increases my heart issue possibilities (yippee, see above) and because I’ve had, what the internist now believes were probably three TIAs, it looks like I will also be prescribed statins to lower my cholesterol as far as possible so blood flow is optimized through all those pesky veins and arteries.
The probable previous TIAs were from last year. One happened when my right leg completely gave out, and though I didn’t fall, I think it was only because Kevin saw what was happening and held me up. But it too was over fairly quickly. The other time was when my right arm did something similar, going completely numb and limp, my pencil falling from my hand as my hand flopped open and useless. It too was over within a few minutes.
So consider this my public service announcement. If you suddenly lose vision in only one eye, if your leg or arm (on only one side) suddenly gives out on you…get thee to Emergency. There are other possible symptoms but these are the ones that have happened to me.
I titled this a Selfish Public Service Announcement, so here’s the selfish part. In spite of the medicines, the odds are not in my favour. I could graduate from these TIA warning shots to having an actual stroke.
So here’s my big ask…I am hoping you will take the time to learn the FAST rule, so that if the big one comes at me while in your company, I want you to know what to do. Time is of the essence. The key is to get treatment fast to reduce the damage.
I told you this was all in my own self-interest!
But seriously, I am also very much hoping that you can learn from my experience. Learn to recognize and be alert for the signs that tell you when you need to get to the hospital. Do not second guess yourself. It’s better for it to be a false alarm than for it to be ignored.
I’d love to wrap this up with some clever quote, but alas, all I know so far is this; in spite of all our medical efforts and the healthiest of habits, not one of us gets out of here alive.
So, look around you. Pay attention. Appreciate your life. Practise gratitude.
Protect your health and most of all…be kind.
Thanks Colleen for sharing your experience and reminding us to be aware of what’s going on in our body and not delaying medical attention. I am glad that you stay positive and you have the support of many friends. 🧡
Thanks Catherine. I’m learning to advocate for myself. I think, like many people, I have always found it easier to lobby for others. Time to pay attention and listen to my body and then ask questions.
Thank you Colleen for sharing this – in your own very candid, insightful way. You are gutsy and courageous to take us all along with you in yours, and our learning.
Thanks Lori. Our Parkinson’s support group has a motto. It’s not unique or new but it resonates, that is: “We’re Stronger Together.” That’s how I feel about writing and sharing stories too.
I believe it’s relevant for so many of life’s situations, whether we’re talking about a country, a group of friends, an online community or a PD support group.
Well, crap. I will definitely regularly update myself on FAST and be mindful of the nearby people. One never knows how or when they might save a life. It’s is important to keep in mind that anyone can help in a medical emergency with positive results.
Thanks Alberta. I’m glad you’ll stay up-to-date on FAST. Who knows when it might come in handy? And yes, because we know what to look for and to call 911, you or I might be the one to make sure precious minutes aren’t wasted.
Wow Colleen, as if you didn’t have enough to deal with! Thanks for sharing, it’s a good reminder of what to watch for and to not to brush symptoms off. Hang in there, keep creating your wonderful art. Lots of love to you and Kevin.
Hi Cheryl,
Thanks for your encouraging and supportive words.
I (mostly) manage to not project into thinking about what the future might look like.
I was stuck in that terror when I was first diagnosed…not a place I’d recommend.
It turns out that all those gurus were on to something, we only have this moment and if I can stay in the present, it’s easier to be positive or, at the very least, know that whatever emotion that is overwhelming me, will also pass.
Hi Colleen, Sandy from Gibsons here. First of all, I am so sorry to hear you are going through these challenges and applaud you for your attitude and humour through it all. I remember my mother going through TIAs and it affected her by momentarily taking her language away so she spoke gibberish. It would last a few sentences and she was aware it was not right. She had TIAs periodically for about 10 years before “the big one” at 83 years old. Medicine and treatments have advanced significantly since 2004 so I am hopeful you can manage this.
Hi Sandy.Nice to ‘see’ you 🙂 Thanks for your kind words. Your mother’s story sounds hard, but yes, advances in medicine and treatments are evolving all the time. Right now, I feel like I’m in good hands, though it was kind of funny when the TIA clinician wanted to talk to me about healthy lifestyle.
I explained to her that I could be the poster child for doing all the right stuff. I drink a ton of water, eat a healthy Mediterranean-style diet, don’t smoke, hardly drink at all, meditate, walk in nature every day, exercise, have a great community and good friends, paint and do other creative projects and play the piano…oh, she said.
Thanks for the info- not selfish at all – we are all at this stage in our lives, we need to be aware.
My mother had Parkinson’s, every time I see you I think of her❤️.
I was hopeful that more strides had been made in treatments, here’s hoping that will be the case for you
Hi Jill.
Awareness, so they say, is the first step. I know it always helps me to know what others are dealing with, because the thing is, we all are, or soon will be, dealing with something.
There are lots of new studies and explorations going on with Parkinson’s so who knows? Meanwhile, I volunteered to be part of a study out of the University of Alberta. It likely won’t help me but it could help the next generation. There are many great minds working on so many of these things. There’s probably a 12-year old genius somewhere who will eventually crack the code. Here’s hoping!
Oh Colleen, what a kick in the gut! As if Parkinson’s isn’t enough!?!
I’ve always had low BP but since turning 80, it’s started to climb well above average to the point that my doc prescribed Candesarten to widen blood vessels and prevent a stroke. Taking a low dose of aspirin also helps to brings it down.
Now that you mention it, I’ve also noticed my right leg sometimes gives away quite unexpectedly. I always grasp a hand railing to prevent a fall because breaking a hip could have a bleak prognosis. It’s a bit concerning when I go for a walk but I’ve joined an “Adapted” swim class, which seems to be helping with mobility. Google search is usually very helpful, but I didn’t look up that symptom. Thanks for that warning.
Hang on tight as your rollercoaster takes you on a wild ride! I think of you often dear cousin of mine, Martha
Ah Martha. Please mention the sudden leg weakness to your doctor. It could be important, hopefully not, but that’s for them to figure out.
I used to love the rollercoaster at the PNE, but not loving this metaphorical one quite as much. To be fair, the idea of getting on a real one, doesn’t sound so hot any more either.
Thanks for your encouragement and support. One of these days, I hope we can actually sit down in real life. Ya never know!
What a scary experience for you Colleen!
Thank you for your brave investigations and leaving us all a little bit prepared for what could be next.
Thanks Carol. This is exactly what I hoped for…that my post might help someone else recognize the signs and know what to do for themselves or someone they love. Take care.
Oh Colleen… as much as I appreciate your blog and selfishness, I can’t help but feel the incredible roller coaster of emotions that you must experience through this journey. I am so grateful that you embrace the learning and help all of us to understand your journey better. Sending you love and hugs and a peaceful day. Keep enjoying nature and the beauty that surrounds you.
Thanks for your kind words Janyce. I’m just back from another incredible snowy walk. It’s -6 C and the pine needles are frozen and delicately frosted. Baxter has romped around with sticks and pinecones and I swear his joy at being alive is the best medicine of all.
And yes, you’re right…the rollercoaster sometimes feels like a bit of a wild ride. I’ve had my share of ugly crying but overall, I’m just so grateful to be here. Maybe not alive and well, but certainly alive and well enough to know life is a huge gift.
Bless. Thanks for sharing Colleen. Life is precious. You’ve got this.
❤️❤️
Victoria.
Thanks Victoria. Life is indeed quite the amazing gift. I feel very blessed to have so many good people in my life.
Brilliantly captured Colleen. Thank you for sharing, educating and most of all reminding us all what matters most. 💕
Thanks Juli. There’s so many things we need to know to take care of our health. I’ve seen that FAST poster so many times before, but it never felt relevant until suddenly it did. I’m glad I can help get the message out to a few more people. And yes, at the end of the day, all we can really do is be kind to each other.
Love you and love your proactive approach. You inspire me.
Blessings and love right back to you Corynn. Please soak up some of that Vitamin D for me. Mexican sunshine is some of the best medicine around.
Thanks Colleen, I’m definitely glad I read this .. forewarned, as they say..
Jim. It seems we’re all dealing with something or another. I’m so glad my message is getting out there. I know for myself, I tend to pay more attention if it happens to someone I know, so I’m happy if that’s what I’ve achieved here.
Thank the goddesses you research and followed up and got seen quickly! This aging ain’t for sissies! Glad the medical system is working out there for you. And great PSA.
Thanks Bern. Better living through better chemistry eh? Thank the goddesses. I love that. Could be my new thing. As much as the internet has, and is, upending our lives, it has also been a huge help for situations like mine. All the information was literally at my fingertips, but then, the important next step (!) was actually going to a medical professional with my thoughts. I’m so glad there are so many competent people (in my case…all of them were women) who decided to get into medicine.
Thanks Colleen for sharing your medical journey with us and your research on TIA’s, very informative and good to know. Will remember this information.
Sending you good vibes and positive thoughts.
Thanks Ann. I’m feeling your good vibes and positive thoughts and sending the same back to you. That creates a full circle of healing don’t you think? I also get lots of Baxter hugs which, I’m convinced, are very healing.
Thank you for sharing your “selfish” PSA Colleen. I will definitely keep the FAST rule in the forefront of my mind in case you or anyone else experiences a TIA or stroke. One never knows when they might need to act.
Thank you for sharing your journey.
Veronica
Thanks Veronica. I’m so glad you’re on it. That was certainly my hope with this post…for all of us to be more aware of what this looks like so we can help each other. We’re always stronger together.
Colleen, I didn’t know that Parkinson’s put you at extra risk for strokes, as well as melanoma. Thanks for sharing that; it’s good information to have. And as if you aren’t already popping enough pills, you get to add a few more. I’m sorry this happened to you. 🙁 Thanks for taking us along on your journey. You’re in my thoughts, Colleen. Wish it were otherwise for you. Elsie
Hey Elsie. Thanks for your kind wishes.
It’s so bizarre that I’ve become one of those pill-case-toting-old-ladies. Up until this Parkinson’s thing, all I ever took was a multi-vitamin. And now? Yikes. But anytime I find myself internally whinging about all the pills, I remind myself that the point is, I am getting medicine that is unavailable or often too expensive for many other people in the world. Gratitude baby.
One of my favourite sayings about life…Order what you want. Eat what you get.
Thanks for detailing all your recent issues that some would not pay attention to. Some sound stranger and would not attribute to a TIA. Happy you did your research and sought medical attention. I will keep this all in mind, as my mother suffered TIA’s but never in my presence.
Hey Gay, Forewarned is forearmed…is that the saying?
Mostly, I’m just happy if this brings awareness to more people. If you get a chance, it’s worth reading up further on it.