(55) PD & control: my IN/Dependence

Persons with Parkinson's (PwP)

As a Person with Parkinson's (PwP) I often ponder the imponderable when an action I'm attempting to carry out is disturbed and out of control by my freezing or by my limb tremors. Some of the pondering involves considering whether or not my being parkinsed is:  

1. An Internal malfunction in my body that could be the source of the 'disturbed' action and this would include genetic factors inherited via "faulty" genes from my parents, resulting in my Parkinson's Disease (PD); or the result of  
2. External issues that could also be the source of a 'disturbed' action and include drug abuse, effect of cellphone use, impact of chemical exposure, accident trauma, etc. resulting in PD; or
3. ?

If it's rabbit hole 1. above, dear reader, then I should be able to find a medical specialist or researcher who will be able to point out a process to follow, leading to possible diagnoses of my gene trail. If it's 2. then I should also be able to find a medical specialist or researcher who will be able to offer diagnoses and ways to explore external issues. However, both these views are mere speculation unless I am a permanent resident of a First World country with reliable medical support. 

Hmmm...unpacking my thoughts in such a simplistic manner allows me to wander down a third rabbit hole: 3. The "Internal" and the "External" issues are actually two sides of the same coin. Both result in the same outcome, namely, being controlled by PARKINSON'S DISEASE! I become dependent and allow PD to determine my future. (Sigh!) 

I could also focus on the positive side of dependence and accept someone into my life to assist me with my daily living as a PwP. This is also known as assisted daily living (ADL) but more about that later!  

Dependence or INdependence or...?

Let me now explore a thought related to the three issues above via another "*noitcelfer" (*see Post 54 😉) regarding the impact of being independent (IN) or dependent (D) relative to my life. A brief outline is represented in the following list. 

• 1977 - first salaried appointment as a post-graduate student
• 1980 - first salary as Lecturer (➢IN, employable professional but D on employment)
• 2013 - first diagnosis of PD (➢D on medical research but IN to decide on direction)
• 2017 - officially retired in December (➢IN and employable but as PwP, D on pension)
• 2018 - first pension in January (➢D on pension as income)
• 2022 - first started Ayurvedic regime for PD (➢D on treatment but IN of side-effects)

Between 1980 and 2017 I was earning a regular salary with benefits and became dependent on having employment but my creative spirit resulted in my not being dependent on one specific employer. When retirement ended my working life in December 2017 I became independent and not reliant on any one employer. But I am completely dependent on a pension as my monthly income. I had been employed for 36 out of 40 years when I was diagnosed with PD in 2013 so I am grateful not to have had early onset PD. 

My last employer offered me part-time employment for 2018 but I turned down the offer in order to focus on my PD full-time. In retrospect, that was not a wise decision for my career but perfectly suited to discovering more about my PD and how to engage with it.

So, like the internal and external issues regarding PD above, my experience of IN and D in my career is that they are often relative to each other. Below is another "*noitcelfer" (*see Post 54 😉) that is linked to personal assistance and some effects of IN and D.

Assisted Daily Living (ADL)

According to the Stanford Parkinson's Community Outreach programme in California, PwP "want to remain as independent for as long as possible." To support this belief as well as the notion of "Assisted Daily Living" (ADL), they have produced a PwP-friendly booklet entitled Be Independent (2009). It is very useful because, as you can see, the language used is simple and the many, accompanying hand-drawn illustrations are apt. I have found and used a number of their practical tips.

A few years ago, my wife diplomatically introduced the topic of caregiving and then, soon afterwards, introduced a caregiver, NM. Naturally, I was certain about the "Daily Living" but completely uncertain about the "Assisted" part. Well, grudgingly, I agreed to the idea, a trial period followed and now I would lost without her, even though she only spends part of the weekdays with me! The timing of her arrival and presence as a caregiver was perfect, given my growing Dependence - since late last year - on someone to help me to shower and to dress.  

In conclusion, I have now become Dependent on and enjoy being assisted by NM, so far less stressed about my state of assisted daily living. I accept that I'm a PwP: I am 72 years old, on a drug-free PD regime, and my brain and memory are still good, as is my handwriting. There is much for which I am grateful. So having to rely on assisted daily living has become part of my being a PwP! So, I'm unable to drive, I walk funny and I have visible tremors but, I am a PwP!!!

The most positive part of being assisted with my daily living is that I have daily routines between 08h00 and 14h00, from Mondays through to Fridays. The constructive part of having eating & exercise & entertainment & medication routines managed and supervised by NM (and my wife) is that I exercise on my own over weekends and public holidays when NM is not with me rather than take those days off :-). It's an example of the complex relationship between one's perception of the notion of INdependence and Dependence compared to what can exist in reality.     

Till the next post dear reader, do take care!