(49) Newly diagnosed with PD? Here are my A,B,C's!

A,B,C's of Parkinson's Disease

If you were recently diagnosed as a person with Parkinson's Disease (PD), then in this post I provide some basic info about PD in the context of three themes. Remember, you must see a neurologist to make sure that you have a form of Parkinsonism...

I was diagnosed with PD in 2013 and worked till 2017 when I retired. In all the posts in this Blog since early 2020, I have shared personal views and experiences of my own parkinsed life and presented events and experiences in the lives of other people with Parkinson's. Within the content of these posts there are three possible themes regarding my personal interpretation of Parkinson's Disease (PD) and its ongoing impact on me. They are: 

• what is (the reality of a Parkinson's diagnosis);  
• what should be (the possibility of being cured in a reasonable period of time); &
• what can be (what is available outside the bounds of clinical trials). 

If you were recently diagnosed or suspect you might have PD, then here is some basic info.

➤  WHAT IS...the reality of a Parkinson's diagnosis! 

Once you suspect you might have a nerve-related problem then do get your family doctor to check you in order to recommend a specialist. It is critical that you are given expert opinions. Parkinson's affects everyone differently so it is ideal, if possible, to get a few diagnoses. If you are in a small town without a specialist then it is important to look for one in the nearest city. The decision to accept treatment via a specific medication must be an informed one as it is probably going to be with you for most of your life. 

Once diagnosed with PD, then your neurologist will prescribe pharmaceutics (drugs such as Levodopa or Sinemet; there is currently a 2023 clinical trial into a cough medicine, Ambroxol). You could also consider the possibility of Deep Brain Stimulation (DBS). There are also people with PD who swear by alternatives such as a cannabis extract (CBD oil), mostly based on useful anecdotal evidence by some, rather than on clinical trials. So, get as much info as you can from as many sources as possible.     

The internet is very useful. It is a virtual book without covers, providing an endless supply of information that is meant to inform you. But, the sheer mass of information it churns out can also confuse rather than inform. When I type "Parkinson's Disease" into a search engine like Google, then it yields about 211 million matter-of-fact results that is overwhelming, while typing "Parkinsonism" provides a mere 21 million results. However, if I search for "Parkinson's 101" then I will find five short paragraphs on the Fox Foundation website providing an overview of PD that's not meant to shock but to inform, including a single link to their useful Parkinson's 360 toolkit. This is one of many useful sites out there. Also consider other search engines that do not track your searches, such as Duckduckgo.

Now, the history of PD is complex and speculative with many possible and varied causes.  Below are  some thoughts to consider regarding why I have PD. 

• CAUSES Some causes and symptoms are described here, while others are based on assumptions regarding chemical exposure (paint, crop spraying, dry cleaning chemical), *head trauma  (accident, American football), and hereditary transfer (rare). (*I had a head trauma when I was five and in 1999 we experienced the loss of our teenage son.)
• COFFEE While coffee can have a positive effect on the brain and neural pathways, unfortunately, there is also the issue of pesticide residue on beans. {For my own use I look for organic coffee beans or "Nespresso" pods and hope for the best.}
• PD STAGES There is much written about the 5 Stages of Parkinson's. The stages are useful as a description of disease progression, but also dependent on the person's age, gender, quantity and type of prescription drugs, etc. 

The speculation above regarding possible causes of PD is not a definitive list but some possible considerations, especially, in my case, the issue of *'trauma'. 

➤ WHAT SHOULD BE...the possibility of being cured within a reasonable time!

Around 1000 BC in the East, the "L-dopa" plant extract was first used to ease symptoms of "tremors". During the early 20th century in the West, it was used to ease symptoms of the "shaking palsy", named PD, after Dr James Parkinson (there is a link to his original 1818 essay below in PD "SIGNS"). 

However, the nature of the human body's structure and accompanying levels of protection, has made it difficult, for instance, for PD treatment regimes (i) to find the apt dosage and (ii) to cross the body's blood-brain barrier. This is my understanding of why we struggle to find cures. Sadly, it is also possible that this amazing blood-brain barrier has been compromised in the case of people with Parkinson's.

If South Africa was a first world country, then we could have expected the prevalence of PD to have been diagnosed and treated at both private and public health care facilities. There would have been a lobby at government level to investigate and minimise the causes of PD and, in the long-term, to attempt to eradicate it. Also, there would have been attempts to document all cases of PD in order to have statistics to inform a country-wide intervention. Sigh! This is not the case. And currently in Durban, Kwazulu-Natal, there is evidence of only one initiative providing support to people with Parkinson's.              

➤ WHAT CAN BE...available alternatives

What follows is neither an exhaustive nor a definitive list but my own collection of alternatives for you to try. 

INTERNATIONAL RESEARCH 

•  If you're curious about your own symptoms in relation to others in the world then consider joining Fox Insight. A comprehensive survey (about 1.5 hours max to complete) will then be sent to you to complete online a few times a year. It is a good way to keep track of your symptoms as each survey is similar. Michael J Fox (Back to the Future movies) is an actor who started a Foundation and has raised over a billion dollars in the USA towards PD research. He was diagnosed with PD in 1991. He has also written a few books and I can recommend No Time like the Future where he shares insights into his condition.

PD "SIGNS" 

• A tremor is not necessarily a sign of PD as there is, as a result of ageing, an essential tremor (that also differs from an intention tremor) and that is similar to a PD tremor but not exactly the same. A misdiagnosis with accompanying meds, unfortunately, could result in long-term damage and unpredictable side effects. 
• In the early 1800s, a British surgeon and palaeontologist, after extensive observations, published an Essay on the Shaking Palsy. The neurology world was so impressed with James Parkinson's observations that they named the disease after him! This essay is also a useful read.
• Heavy legs or lower limb weakness might, over time, become an issue.
• Dizziness or fainting (and slowed movements or bradykinesia; facial masking; drooling; etc.) are some of the standard possibilities with the onset of PD.    

ALTERNATIVE APPROACHES & EXERCISE

• The Davis Phinney Foundation blog is a good place to start when looking for alternative exercises and diet to counter PD.
• Read John Pepper's amazing PD story - he's in his eighties and lives in South Africa - I met him in April this year and he still looks really good.
• Try Gentle Chair Yoga  AND 5 minute Tai Chi for beginners.  
• Check out Dance for Parkinsons (South Africa) and the mother body website in New York for useful videos. (NB if you're close to Pretoria they have a weekly Dance for PD class.)
• Find a reputable biokineticist near your home and go as regularly as you can.
• Have regular foot/leg and shoulder/arm/hand massages to improve the circulation. It helps!
• Diet for PD - one interesting point of view.  
• An Ayurveda approach to PD - it's a slow process but uses a non-pharmaceutical approach in treatment so there are no side-effects of which I am aware.
• My wife switched to only cooking with coconut oil 10 years ago - there's no clinical trial but :-)...
• Read my Blog for tips and tricks that work for me.
• Where possible, get rid of negativity in your life. Make simple choices, like avoid watching TV programmes that irritate you and listen to more of your favourite music. I start every day with a few hours of music during breakfast. I also subscribe to a weekly SA blog of positive stories at The Good Things Guy. 

CONCLUSION

This post (49) was inspired by BB in Mpumalanga: thank you, Bennie!

After choosing to fight PD in a drug-free way since 2013 - the year of my diagnosis - I am still constantly tired, often frustrated by my tremors and poor balance, and remain a moody pensioner with Parkinson's. However, I still have a caring wife, daughter and three granddaughters, a caregiver and 71 years of great memories that make this life worth it. And there's this monthly Blog post that keeps me 😊.

Whatever route you decide to take, go well and God bless you.