- Things I Wish I Knew -

An Accumulating List of Things I (sorta)Wish I Knew When First Diagnosed With Parkinson’s – Part 1

Inspired by a Facebook post from Kathleen Kiddo.

Initially, what I had started out capturing below, was a Partial list of ’Things I Wish I Knew’ ( when first diagnosed with Parkinson’s). 

I’m interpreting partial as only ’what I’m living through or with’, where you, as possibly a person with Parkinson’s (PwP) or care person or simply an interested reader, may have other items to add to your own personal list or you may be experiencing identical listed items but at different intensities or percentages of engagement. 

I’m saying this with the knowledge, and hopefully you’re aware that none of ‘us’ (we ?) pwp have identical Parkinson’s footprints….it’s often said our Parkinson’s footprint is like that of a snowflake, except our disease does not disappear in mild temperatures… no, PD is an ‘all season’ storm.

I didn’t want to present this list in a way that it may be interpreted as a ‘final version’, though that would be nice, yet it would be filled with revisions as time went on. It’s far from over and there are more chapters ahead. 

The reality is, that as my PD is progressing while my altered life goes on, I’m coming across more ‘things’, that I never knew or thought would play a part in my Parkinson’s progression.

As it stands now, while living within the COVID-19 world that we’re all dealing with, my PD has jumped into the lead in our race to the finish, due to the restrictions enforced and the minimized resources I currently have access to. In my mind, I’ve cried foul and asked for a restart…. but to no avail.

I look at this growing list below and there’s some real game changers there…maybe it’s just as well that I didn’t know when first diagnosed, that over time, I’d be experiencing them.

1 – Misunderstood and Complex – Parkinson’s is a far more complex brain disease than what is commonly presented. I wish I’d known that PD is an intertwining of movement and as equally unpredictable, non movement symptoms, with varying levels of intensity and treatment solutions per individual.

2 – Non Movement Symptom Awareness – Due to their stealth-like progressive nature,  I’ve felt that non movement Symptoms have a far greater chance of embedding in me over time, before I feel I have an opportunity to treat them. 

I can see or be told of the changes in movement, range of motion or posture and in turn, deal with them. There may even be some pain associated with the attempt to maintain or retain what I may observe I’ve lost, however, non movement symptoms can be overlooked if not brought to light by myself or care partner or members of my close circle of friends, due to the nature of when or the conditions in which they may arise.

3 – Diagnosis Results Meeting – Many neurologists appear poorly equipped to share the diagnosis results / treatments available in a timely, empathetic manner. The diagnosis revelation meeting is a pivotal point in establishing a foothold on ‘ok, what do we do now?’ 

4 – Your Game Plan – Prepare to be Your Own Advocate – The sooner you take action as an advocate for your own well being by understanding and possibly treating the early stages of your symptoms, the better equipped you’ll be to address the current state of the disease…An early detection of a minor symptom should not be ignored. 

5 – Learn To Say No or Prepare to Improvise – It may be the first time that many of us put our health and well being first, by learning to say ‘no’ to commitments, even as parents .. naps and rest are crucial. Many of us will keep working, there may be no option, however, look at your day and if possible, don’t ignore signs and opportunities to reduce energy loss.

6 – Temperature Swings – Getting a deep ‘chill’ can trigger very intense tremors throughout one’s body and likewise, exposure to a very hot temperature can result in fatigue settling in. Both may take a longer than normal  time to rectify. 

7 – A Social Element – Even If it’s not in your nature, find a way to be or remain social ..(visit, phone, or email) even if it’s part of a non Parkinson’s related function. Many people with PD tend to isolate themselves, which then becomes more difficult to change over time. Obviously now as many of us are trying to get through the day and night under restrictions/ lockdowns cuz of COVID-19, we’re all fending for ourselves and trying to just make it through each day….all the more reason to try to socially connect.  

8 – Parkinson’s is a Master of Deception – With it’s relatively slow, yet relentless pace of progression, if we’re not aware of it, PD will attempt to establish a new norm or a revised ‘personal best’…. trying to deceive us, that this is the best we can do…

Whether you’re speaking or being physically active, its’ important that you try to exert yourself safely to a level that is beyond what you believe is your ‘norm’… 

Speak louder, your voice is probably weaker than what you hear..

When in motion, reach further, stand more erect, swing your arms further and more freely when you walk, lift your feet, walk with a focus on a heel to toe stride…… all things to keep in mind…. If you neglect to use it, you may lose it…over time.

9 – You can, I can, we all can Inspire and Be Inspired – by believing that there’s one thing we all have in common that will always be there for us… It’s our ‘inner will’ – it may be a spark or it could be a flame but it’s one thing that Parkinson’s can’t take away… never give up on your self or your potential… 

10 – If your dentist happens to mention to you that you’ve got ‘dry mouth’, it’s not a compliment, it’s a serious dental condition and not to be left untreated. 

Apparently Dry Mouth is quite common for PwP.

Having ‘dry mouth’ means that you’re not producing enough saliva to assist in keeping your mouth moist and able to flush out the bacteria that finds it’s way into the nooks and crannies and fillings around your teeth. 

If not treated, it’s just a matter of time before the bacteria erodes the structural foundation of your teeth and it can become a painfully serious problem. I didn’t give my Dry Mouth the attention it required between scheduled dental visits, missing one appt and then falling into the non essential queue of COVID-19 shortly after a minor pain started in one tooth, followed by 2 capped teeth breaking off at the gum line. By the time the dental restrictions were in place and I was able to see my dentist, I was booked for the extraction of 3 teeth…. A joyous relief after 2 months of agonizing pain.

11 – Turning Over in Bed (when my current dose of meds have run their course and my next dose has not kicked in) I think I’m going to need a refresher. Ok, just because I haven’t had  a good nights’ sleep in months, that’s no reason to rob me of the ability to turn over in bed…I believe there’s still a need to effortlessly turn from one side to the next until I’m comfortable. 

What’s happening recently, is I’ll easily crawl into bed  and I find myself lying on my back, left hand attempting to grip my blanket and roll my body to my destination…. snuggled up on my right side with a small pillow between my knees…..that’s not the case though. My left hand can barely grip the blanket and my body has no recall of how we rolled into our sleep position the night before. As of late, it’s taking me about 3 to 5 minutes to remember and put into play the choreography for rolling over in bed. Definitely wasn’t expecting this to be an issue, well at least not this soon for me.

Well, that’s it for now and hopefully for quite a while… 

Word of advice for myself….consider starting a fresh list of ‘things’ next time.. gotta go, time to floss !!

Thank you..

Shane McPhee