Today marks 8 years since D-Day (Diagnosis Day – read more here: Okay). While it is not an occasion to celebrate, it still stands out as a memorable day, somewhat similar to how the death of someone dear would mark a calendar. Here are my current thoughts about Parkinson’s with 8 years in my pocket;
I’m noticing that things are progressing (and in chronic disease terms…this is not good) so I’m trying to wrap my head around that. This requires a balance of figuring out ways to improve the way I feel but also to accept and adapt to the way things are going. This is tricky. As I type this post, the Serenity Prayer comes to mind; “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”
Time is fleeting. So, I’m working to embrace the present. If there is something that I want to do, I’m going to try hard to make it happen now, as opposed to someday. Someday is going to look and feel very different to now so options must be weighed and prioritized with special consideration.
Restless Leg Syndrome is a truly uncomfortable, disruptive, and particularly annoying sleep disruptor. But I found a solution. Actually, I didn’t find the solution, my highly-informed and helpful friend Arrica gave it to me and it worked!
A few sips of dill pickle juice gave me almost instant relief for this skin-crawling, heeby-jeeby, unsettling feeling. I was back in my bed with calm legs in minutes.
Some might suggest that the relief is from the heightened content of sodium, magnesium, potassium, acetic acid, etc. Others believe that the juice activates channels at the back of the throat which “triggers a reflex that shuts down the cramping feeling, by shocking the nervous system and reseting the nerve pathway to muscles all over the body” (Australian Institute of Sport). Stills others believe it to be a placebo. Whatever the cause/effect combination is, it worked for me!
*Remember I am not a doctor so do your research before you try this remedy for yourself! Probably not ideal for someone with heart conditions or high blood pressure. Luckily for me, the only side effect was my scrunched up puckered face in response to the taste!
This past week has been rough. And that prompted me to write about my struggle. But when I logged in, I realized that I hadn’t written since June! I questioned my purpose for writing. It seemed I had fallen into a habit of only writing from a negative lens. Easy enough since Parkinson’s is lousy, but if there is ‘good’ then it needs to be acknowledged.
The Good
* I planned and went on a 13-day Mediterranean cruise! We had never been outside of North America so this was the trip of a lifetime! I was very aware of how PD could make this difficult and planned accordingly. I gave myself permission to alter plans as required, rest when needed, and I repeatedly checked my med count and multiple med packing spots so I would never be without (been there – not fun A Day Without Meds). Planning paid off and the trip was incredible. We logged between 8-10km of walking per day (which as I’ve said before is my best medicine Exercise is Medicine and Exercise is Medicine #2 ) and saw everything that we had hoped to take in. PD took a back seat and I was incredibly grateful.
* I picked up a new hobby! What started out as painting an old dresser turned into a new hobby of refinishing old furniture. There is something very rewarding about stripping off old worn-out furniture, finding the treasure underneath and giving it new life and purpose that provided me with tremendous joy. The energy that I found seemed endless – furniture rescue operations provided me with a natural hit of dopamine that had me on overdrive. I refinished over 10 pieces of furniture. I renovated the laundry room. I refinished and painted my kitchen cupboards and renovated my kitchen. I was unstoppable – obsessed. Not a bad addiction to have though as I’m truly enjoying my living spaces! As the winter weather moved in, I had to stop working. It became too cold in my garage, for both myself and the wood, to continue.
The Bad
* As soon as the kitchen was finished, I got sick. Just a head cold, but it knocked me off my game. My low blood pressure kicked in and poof – I’m on the couch. Fatigue, worsened tremor, rigidity, apathy, dizziness, restless sleep/dreams. It all came back like a wave and I went down.
Why? Well, it could be really simple and I just picked up one of the many viruses that are circulating and this triggered all that defined PD. But I’m starting to think that once I closed up my little woodworking operation, the extra hit of dopamine was sorely missed.
Increased my salt and magnesium intake, and getting my meds on time is working, but at a very slow pace. I know what I need to do; move, get outside, eat well, and find a new purpose. But it is so crazy-hard to do that when your battery is dead.
The In-Between?
There is no such thing. Seems that it is all or nothing. I prefer all.
“If you listen to your body when it whispers you won’t have to hear it scream” – Unknown
I have been walking 5km/day for 21 days straight. My friends and family have raised $2084 for Parkinson Canada. The goal is to do this for 55 days so I have 24 days to go.
But the thing with Parkinson’s Disease is that sometimes it dictates what the day brings. And today it feels like I’m going to have to let it be the boss as stiffness, slowness, fatigue, and tremor seem to be outweighing my attempts to put on my running shoes and set my watch.
Of course, this can all change and I could head out afterall, but experience tells me that this might just be a day where surrender is required.
I have been told, by many, that I am ‘competitive’ (right now I know that some of you reading that statement are laughing as you recall a time when you have suffered through my competitive behaviours!). I don’t like to give-in. But PD has taught me that there are times when making informed decisions is the best option.
If I finish the day without getting the 5km completed, I will be disappointed. However, if I push myself beyond capability, I could end up feeling worse, get dizzy, lose balance, fall, etc.
99% of the time, exercise makes me feel better – loosens things up – encourages flexibility. But right now, I am the Tin-Man; stiff, rigid, stuck and perhaps feeling a little rusty after all of these rainy days.
I am feeling completely overwhelmed by the generosity of friends & family!😍
In my quest to fundraise for Parkinson’s Canada by walking 5km/day for 55 days, I have already surpassed my $$ goal!
Also feel very lucky to have the perfect 5km trail around Kempenfelt Bay here in Barrie where Garth and I enjoy walking! And so far, I’ve had 5 days of fabulous sunny/warm weather which has made it very easy to be outside! I think the weather is about to change but I’m hopeful that I’ll stay on track regardless!
“Sugar is the sociopath of foods. It acts sweet, but it’s really poison.” – Karen Salmansohn
I know it has such a negative impact on me…yet I have such a hard time looking away. Cakes and cookies and creams oh my! Toss in Christmas festivities and the effects are multiplied.
It’s my own fault. For some nostalgic reason, I feel obliged to bake in December. Peanut butter chocolate squares, snickerdoodles, sugar cookie cut-outs, shortbread, etc. Yes, I tell myself that I do it for the kids…but who eats it? ME!
Of course there are scientific connections – dopamine availability, impulse control disorders, microbiome health etc. Just google “sugar and Parkinson’s” and you will find a plethora of scientific journal articles and research into the topic.
I don’t need any further scientific proof or research to confirm that this substance that I love, is tremendously harmful to my health. My symptoms speak for themselves. I am fully aware that sugar does not get along with my gut, my heart or my brain – yet I continue to consume it in unhealthy and immeasurable quantities.
This is it. We have to break up.
There is no better (and more obvious) time to start over, so tomorrow at midnight on December 31st, I will make valiant attempt to make a clean break from processed sugars.
“I hate being sick, I feel like a superhero with no powers.” – Unknown
After almost three years of staying home, wearing masks, getting jabs and boosters, the Covid-19 virus finally struck my family two weeks ago.
This is my first real bout with illness following my diagnosis 5.5 years ago (long time – no sick…I know!), and having gotten through the worst of it, here is what I have learned about being sick when you have a chronic neurodegenerative disease.
Medication: All medication to alleviate my Covid-19 symptoms must be carefully considered so as not to interfere with PD meds. I take two different PD medications; Carbidopa/Levodopa and Rasagiline. CL is a pretty agreeable drug, but Rasagiline ‘does not get along with others’ in the medication playground. Something as mainstream as Advil is out for me. Thankfully, basic acetaminophen is an acceptable friend. However, the shelves of pain relievers and cough/cold meds are pretty much empty right now so options are severely limited.
The shelves at my local pharmacy. Look at all the Advil…that I can’t take!
Exercise: The most effective and accessible treatment for my PD is daily vigorous exercise. With the cough, fatigue, and achy body that Covid-19 has bestowed upon me, exercise is not an option. I am already feeling the setback that this will lead to as the stiffness and rigidity will take over without that essential movement.
Sleep: Sleep disruption and PD is common. Add to that the incessant Covid-19 cough and you get total sleep disfunction. Decrease in sleep leads to increased PD symptoms. More setback.
Isolation: Being contagious means no appointments. No physio. No osteo. I rely heavily upon appointments like this but have had to cancel. More and more setback.
Loss of smell: People have reported losing the ability to smell with Covid-19. Loss of smell (hyposmia) is also an early sign of PD and I lost my sense of smell many years before any other PD symptoms showed up. I wrote about it here: The Earliest Sign. So this particular Covid-19 symptom had zero impact, on me, other than concern over the neurological implications. The nose knows more than you think. Losing your sense of smell, either temporarily or long-term should be a concern for everyone.
Post Covid/Long Covid: According to the Government of Canada website, the most common symptoms of Long-Covid are: “fatigue, memory problems, sleep disturbances, shortness of breath, anxiety and depression, general pain and discomfort, difficulty thinking or concentrating, post traumatic stress disorder” (Post Covid-19 condition). Well, much on this list of goodies is quite similar to what many people with PD live with daily. I sure hope that this virus cruising through my body is not thinking about sticking around – opting to stay dormant and bring on more of the same at a later date.
The Great Unknown: Do I have an increased risk of developing complications? Who knows? From what I have read and been told by my medical team, I don’t think so. But a virus has a mind of it’s own and it will be years before we know the full implications of this pandemic. I had the Epstein Barr virus and the Meningococcal virus in my early 20’s and just look at me now! A virus is an uninvited guest, an intruder whose sole objective is to bring more unruly guests into your home to take over and completely wreck your party. Now it’s time to clean up the mess left behind.
and finally, the most important thing that I will take away from this…
Pondering PD 