Tag: #chronicillness

Eight Years

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

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.

Always on My Mind

On By ponderingpdIn Living with Parkinson'sLeave a comment

“Parkinson’s is 24/7, so honor that.” (Davis Phinney Foundation)

I am becoming more and more aware of the many things that people with Parkinson’s have to constantly consider throughout their day in order to make it through. Things that most people can do without even really thinking about how to do them. But PD is always there. Relentless. Painful. Nagging. It is always on my mind.

Clearly I am a fan of alliteration, (see: Reality, Rigidity, Rain or Accept, Adapt, Adjust or Puzzles, Pandemics, Parkinsons or Sandals, Swimming, Sunshine), but the following are the first things that quickly came to mind when I began this piece; sleeping, swallowing, and (not) slipping!

SLEEPING.

Sleeping is never guaranteed. Proof of this is that is currently 3:34am as I type this post. Tomorrow – actually today – is Sunday and the only plan I have is to watch the Bills demolish the Broncos in this first weekend of the NFL playoffs. So hopefully, I’ll grab a nap somewhere during the day to catch up on lost sleep. But this lack of sound and predictable sleep, when followed by an active day ahead, can lead to cancellation, rescheduling, or a miserably tired and shaky outcome. The reason for not sleeping is most often pain and discomfort caused by tense/cramped/rigid muscles. Preparation is the key to successful sleep. This includes a variety of natural remedies; magnesium supplements, not eating after 7ish, pickle juice (reduces muscle tension), zero alcohol, heat pads, extra half-dose of Levodopa, Tart Cherry Juice (natural sleep aid – similar effects of how one feels after a turkey feast!), yoga, mindfulness/meditation, and sleep stories. (I highly recommend: Cillian Murphy Sleep Story which I have playing as I write this post). In combination, sometimes these routines and rituals don’t always work – sometimes nothing helps bring rest. I’ve come to dread ‘bedtime’ as I never know what Parkinson’s has in store for me. Nevertheless, I keep searching for the magic answer.

SWALLOWING.

Swallowing is also never guaranteed. I choke on food, water and pills just a little too often. Swallowing difficulty, called Dysphagia (a coughing-choking event) is common with Parkinson’s Disease and can lead to aspiration (a silent-choking event). They say that as PD progresses, aspiration is the most common cause of death due in part to having the disease. It’s very unpleasant, completely embarrassing, and also quite frightening. I am growing more and more uncomfortable sharing meals with people for fear that I will scare them with my performance. Mindful eating is the key to surviving every meal or snack. Thick cheeses and breads are off the menu. Cutting food into small pieces, chewing slowly and completely, maintaining good swallowing posture and not talking while eating has to be considered with every bite.

SLIPPING.

Slips, trips, and falls are pretty much always guaranteed if I’m not paying attention. While going up and down stairs is a rote activity for most, I need to consider each step carefully. Hand railings are crucial to success as feeling off balance can find me leaning too forward or backward. Outings that involve stairs or uneven terrain need to be considered before I attend. Nose-bleed seating ( the cheap seats) is not an option as steep, narrow, rail-less stairs are an accident waiting to happen. Proper footwear, careful planning, and pre-googling unfamiliar destinations is a pre-requisite.

Cillian’s sleep story is coming to an end, therefore I will stop here as well. It’s 4:21am and I’ll give sleep another attempt. There are many others pieces of PD that weigh my mind down so there is likely a Part 2 in the future, but my eyes are telling me to let them close and I need to listen.

image from: http://www.7cups.com/qa-anxiety

Progress

On By ponderingpdIn UncategorizedLeave a comment

“How ironic is it that I take meds for a movement disorder and their side effect is a movement disorder?”

– Me

Over the past month or so, I have noticed that the tremor in my left hand/arm has gotten worse.

I don’t like this.

At the first indication, I chalked it up to not getting enough sleep, eating too much sugar, or not getting enough exercise. But even as I have attempted to correct for these, the tremor is persisting. My MDS (Movement Disorder Specialist) has suggested upping my meds from 3 pills/day to 4 pills/day.

I don’t like this either.

Generally, since D-day in 2017 (Diagnosis Day), my symptoms have remained rather steady. The dosage of levodopa has not changed in all that time. And now, I am facing the reality of Parkinson’s…it is progressive.

I am incredibly resistant to the idea of taking more Levodopa;

  1. The side effects of increased and continued use of Levodopa are not pretty. The nastiest is the development of Dyskinesia (involuntary purposeless movements). Not good. I have already observed some mild Dyskinetic movements – I don’t like it. How ironic is it that I take meds for a movement disorder and their side effect is a movement disorder? Read more here: Medication side effects
  2. The idea of taking pills four times a day is ridiculous. Currently I’m on an 8-2-8 clock schedule. Upping would mean 8-12-4-8. Add to this the requirement to take meds either 30 minutes prior or 2 hours after protein intake and I think I’ll need a personal assistant! Seems the entire day is planned around meds. I do have a handy little med app on my phone to remind me and I’ve stashed pills everywhere to try to make it easy…but it’s not.
  3. Ultimately, the hesitancy is rooted in my realization that things are progressing (not the good kind of progress). I am a competitive person (some of you are giggling right now because you’ve witnessed this firsthand). I do not want to ‘give in’ or lose to PD.

Contemplating the addition of that tiny extra pill for my brain is a mind game where there is no winner!

Image by Racool_studio on Freepik

Reality, Rigidity and Rain

On By ponderingpdIn Uncategorized2 Comments

“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.

5 down…50 to go!

On By ponderingpdIn UncategorizedLeave a comment

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!

If you are able to donate and/or interested in finding out more, click here: https://donate.parkinson.ca/site/TR/FYW/FundraisingYourWay?px=1248856&pg=personal&fr_id=2781

https://donate.parkinson.ca/site/TR/FYW/FundraisingYourWay?px=1248856&pg=personal&fr_id=2781

Sugar: My toxic relationship

On By ponderingpdIn UncategorizedLeave a comment

“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.

There. I wrote it down so I must mean business.

Now, I just have to tell sugar…

Helpful links:

Davis Phinney Foundation – Sugar Cravings

5 Tips to Beat Sugar Cravings with Parkinson’s Disease

Parkinson’s Foundation – Diet Guide

Parkinson’s Disease and Sugar Intake-Reasons for and Consequences of a Still Unclear Craving

Photo by Suzy Hazelwood on Pexels.com

The Trouble with Getting Sick

On By ponderingpdIn UncategorizedLeave a comment

“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…

Do not get sick: that’s it.