Category: Care

My Invisibility Cloak

On By ponderingpdIn Care, Diagnosis, Living with Parkinson'sLeave a comment

“I’d never guess you had it if I didn’t already know.” spoken by my neurologist today at my semi-annual appointment.

At first, I took her statement as a positive. My masked face may have even smiled. But as I left, I thought differently. Throughout the 8 minute appointment, I told her about pain, nightmares, sleep problems, choking, neck/head stiffness/immobility. She offered no solutions – just listened. I passed her usual 30 second finger/toe-tapping exercises and it was over.

I left no better off than when I entered. Except I had the recurring and uneasy feeling that she really doesn’t get it. Maybe I’m being overly sensitive. Maybe she thought that would make me feel good. Maybe she was just noticing the quieting effects that proper timing of meds has upon my tremor. However, the invisible side to PD is often more problematic than the shaky side. (see diagram below)

My tremor is not predominant, my stiffness and rigidity is. I needed/wanted help for the pain and I didn’t get it.

I often think I’m her one and only PD patient and I don’t quite fit the ‘hunched over, shaky, elderly man’ version of PD that she likely studied in the ‘diseases’ chapter of her studies.

“Just keep doing what you’re doing and I’ll see you in 6 months,” her last words.

More info here: YOPD Symptoms and Side Effects and here: MJFF Symptoms (motor/non-motor)

Caregivers, Rockstars & Superheroes

On By ponderingpdIn CareLeave a comment

“Family is not an important thing. It’s everything.” -Michael J. Fox

I recently read a post on Twitter that November is National Family Caregivers Month (US) where appreciation and thanks are given to those who care for their family members with illnesses. We have a similar thing here in Canada in May. Regardless of the day, month, or year, I felt compelled to acknowledge Garth (my husband) as the Rockstar, Superhero, Caregiver in my life!

While I am not yet at a stage, where significant caregiving is required, we both know where Parkinson’s leads, and I feel I can say confidently that he is up for the challenge!

Parkinson’s is my disease, but in a way, it has become his as well.

From the day of my diagnosis, he has involved himself in learning all that he can about Parkinson’s Disease, has joined me for my MDS (movement disorders specialist) appointments, and attended conferences with me. And in the day to day activities of life, Garth makes sure the front walkway is clear of ice/snow, reminds me to look where I’m walking to avoid falls, cooks me healthy meals, calms me from those vivid ‘scream out’ dreams (that’ll be a future blog post…), as well a million other things required to manage our household. Throughout the COVID-19 pandemic, he has diligently kept our family safe and continues to do so. Much of this is fueled by his concern for my health and complications that could occur should I contract the virus.

When I fell and broke my leg in June, he managed everything.

Caregivers are the ‘behind the scenes’ or ‘backstage’ crew that truly make the whole production work. At times, I’m sure it feels as though an Ironman suit would help, but he doesn’t need it. And although he deserves the applause and cheering heard at a Pearl Jam concert (his favourite band), he doesn’t expect it!

He’s just doing his thing and he’s very good at it! I’m so lucky!

I guess one of the good things about Parkinson’s is that progression (at least in my case) moves slowly which offers both of us the time to adjust to our roles as caregiver and care-receiver! Care-receiving is a strange thing (another future blog post). I have three sons whose roles are quietly evolving into that of ‘caregiver’ – but I’m not quite prepared to write about this developing role-reversal just yet. I try not to get too far ahead of myself!

Today I just say, “Thank you Garth!”

*This pic was taken 3 months after I broke my leg. The trek down was challenging for me but Garth made sure I got there safely by letting me lean on him, both literally and figuratively.

 

Falling From Grace

On By ponderingpdIn Care, ExerciseLeave a comment

grace (ɡrās): n. simple elegance or refinement of movement

Last week, Garth and I set out for a hike in Algonquin Park. The Whiskey Rapids trail was a little wet, warm, and wrought with mosquitoes! Even with bug spray, we were getting swarmed, so we moved rather quickly along the trail.

I was so careful with my footing given that PD interferes with my balance, Dystonia causes my left foot to drag, and Osteoporosis makes me a great candidate for breaking bones. I had my eyes on the ground scouting for tree roots and rocks. I’ll repeat, I was so careful.

Within 30m of the trail’s end, I spotted some hikers just starting out. I took my eyes off the path to look for them and to warn them about the mayhem of mosquitos. I briefly lost my focus.

My left foot hit a root. I heard the snap. I was on the ground.

Broke my left distal fibula (leg). Now, I’m on the couch in a boot cast navigating my small indoor world with crutches. I’ll just say that Parkinson’s and crutches don’t necessarily get along well and I’m back to paying very close attention to the paths I travel throughout my home.

Note to self: Our next house will be a bungalow!!

Thanks to Garth for listening patiently to my emotional, explicative-laden attack aimed at my balance, my bones, and this stupid movement disorder that has stolen my grace.

The Salt Path

On By ponderingpdIn Care, Exercise, Living with Parkinson'sLeave a comment

*if you find yourself here, please also read the follow up; The Salt Path Deception

“A new season had crept into me, a softer season of acceptance.” Raynor Winn

The Salt Path by Raynor Winn is a beautiful recount and reflection upon a couple’s journey through life’s unplanned events. Coping with a devastating diagnosis (CBD Corticobasal Degeneration), financial ruin, and homelessness, Raynor and her husband Moth set off on a 630-mile trek along the South West Coastal Path from Somerset to Dorset, UK. Somewhat unprepared and financially strapped, the pair are destined for adventures both devastating and wonderful.

It speaks to the incredible value found in; (and it’s all free of charge) spending time in nature, being physically active/pushing physical limits, reflecting/being mindful, and most importantly, appreciating the love we share.

I won’t provide any further details because I would like to recommend you read it, especially if you are dealing with any life-changing events of your own.

For me, this was a book of hope.

“A new season had crept into me, a softer season of acceptance. Burnt in by the sun, driven in by the storms. I could feel the sky, the earth, the water and revel in being part of the elements without a chasm of pain opening at the thought of the loss of our place within it all.” – Raynor Winn, The Salt Path

Planning an overseas trip to Cornwall in 2022 (should Covid 19 be behind us) and I hope to cover some of the same parts of the Path that they travelled!

Looking forward to the follow-up; The Wild Silence


The Salt Path.jpg

The Perfect Day

On By ponderingpdIn Care, ExerciseLeave a comment

“It is not the mountain we conquer, but ourselves” – Sir Edmund Hillary.

Things have been a little rough for my body lately and a week ago I received the results from my bone scan which confirmed a stress fracture in my right fibula (outer bone in lower leg).

Major disappointment. Minor shock.

The bone is healing well and with a soft brace, I am walking again. Sadly, I believe my running days are over – but let’s not go there just yet. Meds are prescribed for osteoporosis and another bone density screening is in the works.

When the doctor called me, I happened to be on a family camping trip in Algonquin Park. I was determined not to let this get me down so, after a morning canoe adventure, I convinced my son Rob to go on what I thought was a short 2km hike. At the trailhead, we soon realized that this was in fact an 8km hike with significant elevation!! We headed off thinking we would do what we could and turn around if needed.

As we are both a little competitive, turning around was never really an option…especially with the promise of a lookout at the halfway mark. Spectacular scenery, stunning waterfalls, and some difficult terrain made for an unforgettable trek, and the lookout did not disappoint.

Although we didn’t have the foresight to bring water or snacks or bug spray, I did remember to wear my ankle brace and good shoes! And despite the worry I had over this being too much for my ankle, I relished in the quality time spent with Rob in such an incredible forest.

We did it! And everything worked. It was the perfect day!

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