(41) Parkinson's thoughts & some resources.

Lending a hand...

Whether you are asleep or resting on your bed, sitting down or standing up, writing or typing, eating or drinking, showering or in the bath or brushing your teeth: if you have early onset or advanced Parkinson's Disease (PD) then, sooner or later, you will need some assistance. This generally comes in the form of medication (drugs or drug-free), people (spouses, partners, caregivers, your GP), reading or even tools (purpose-made or adaptive). In this post, I'd like to share available resources and where some may be purchased.

Regarding resources, do look online for what's available in your own country first, before searching elsewhere. In South Africa, I have not had a problem with shopping (returns or refunds) at Takealot.com. Further afield, during the past 18 years I have never had a problem with shopping (including big ticket items over $1,000) or returns/refunds at Amazon.com. Naturally, shopping overseas from South Africa, I would also need to (i) add the currency exchange rate, (ii) shipping costs and (iii) import duties that are excluded from the listed price. 

So, a PD assistive tool listed in US dollars for the equivalent of R200 will cost nearly R500 to be delivered to my door. By the way, I discovered that same R200 tool advertised "locally" by a company called NineLife, SA, was much cheaper than Amazon's. However, upon investigation, according to customers on the Hello Peter complaint forum, this is a scam! After 18 years, dear reader, Amazon still gives me peace of mind. NB! According to Hello Peter complaints, AVOID buying from NineLife, South Africa!

Shopping online or paying for an online service generally requires a valid credit card and then you are prone to the possibility of being scammed by a range of (even "legitimate", "familiar" but) bogus service providers. So, do your homework by asking friends and family for advice and/or assistance before shopping online, dear reader! Most SA banks are vigilant regarding your financial activities outside the country, and will flag and query these.

        

PD assistance

Let's return to the notion of 'assistance'. Some of what follows has been covered in previous posts so I will give you my opinion again. 

* MEDICATION (drug/ drug-free). This is very personal. The obvious decision is to be diagnosed by one or more neurologists, who, once your life-history, physical tests and diagnoses have been completed, will prescribe a pharmacologically manufactured drug with a standard dosage. You may be also be requested to make lifestyle and dietary changes. A follow-up appointment is likely to be requested of you in order to re-examine your symptoms and dosage. You should also read up (some links are below) on drug-free approaches to fighting Parkinson's. There are possible alternatives (also see Post 21) depending on how advanced one's PD has become.     

* PEOPLE (spouse/ partner/ GP/ others with PD) It's critical to talk to people close to you about the diagnoses, in order to get a few opinions and options as they might offer more objective advice. If possible, then connect with people who have already been diagnosed with PD to find out about support systems. Remember also, too many opinions are equally confusing!

* READING (online/ hard-copy books or articles) It is critical that you have a bird's eye view of Parkinson's, preferably before starting any particular regime. It's generally easier to go online to get the bigger picture regarding causes, diagnoses, symptoms, projected stages, etc. BUT, before doing an online search, if possible consider avoiding Google and use a search engine (that does not track your search and predict your perceived interest), such as DuckDuckGo! If that's not possible, then just google it and let it work for you. An explanation follows.

(Excerpt from Post 2, April 2020) "One of the mind games I have experienced is when one does a Google search, for instance, on Parkinson's Disease (PD). It will produce millions of hits. However, in this case, most of the content will be associated exclusively with either a medical or a pharmaceutical context. This does not help the few of us who are not taking PD medication. Seldom are you invited to consider alternatives, unless you specify search terms such as "drug free", "natural remedies" or "PD exercises". If you visit the Fighting Parkinson's Drug Free site it states: "Whether you are fighting Parkinson's without medications or fighting Parkinson's with medications, everybody is welcome here!" 

In all fairness, I must acknowledge that Google will always search and then find information in response to my query. The resultant activity is a tailored response to that query, allowing Google to track and assist me in the future. This filtering system provides an enormous number of similar results rather than alternatives. Unfortunately, this can be simultaneously overwhelming and depressing."  

* SOME ALTERNATIVE/COMPLEMENTARY APPROACHES 

Do check out the following online (I have tried those marked with an asterisk*): 

• Big therapy;
• Biokinetics*; 
• Aerobics; 
• Walk for Life; 
• Swimming; 
• Dance for Parkinson's*;
• Photobiomodulation*; 
• Chinese remedies/regimes & Qigong exercise; and 
• Ayurvedic remedies/regimes*. 

TOOLS (purpose made/ adaptive) 

There are many pages of assistive "tools" for Parkinson's Disease at Amazon. Here are a few illustrations without prices: it's for you to see what's available in your area then to source what's realistic and affordable either locally or elsewhere. I hope you find some inspiration. Some could be made locally. 

For those of us with tremors or stiff joints, there's weighted cutlery as well as curved cutlery.

For those of us who tremor, there are fat pens (they work). But look around your local stationery store, too.

This auto cane assists us to get into and out of the passenger seat of a car, as long as your car has a U-shaped or square steel piece in the door frame (see pic) and not a flattened "stud" for the auto cane to slot into. 

A rubber wrist and hand strengthener. (Even simple rubber bands stretched across flexed fingers generates good exercise.)

A "keywing" to make it easier to insert and/or turn a key in a lock.

A nail clipper that is easier to use than a standard one.

A spill-proof plate.

A two-handle mug - easy to hold and spill-proof.

Do not ignore the simple therapies, such as this kind of book. Or word games and puzzles to keep the brain relaxed yet active.

Or this book, one of thousands.

I love the idea on this t-shirt! Consider other, similar wording.

A cleverly constructed device to assist with sitting down and standing up, with an accompanying video (once the site opens, look at the bottom left side of picture and click on "3 videos"). 

Concluding thoughts

There's an innovative product available in South Africa called a revolving swivel seat, to assist a PD passenger to get into and out of a car's seat. 

  

If you can afford one (in South Africa the price ranges from R300-R3,000) and depending on your health, consider investing in an electric toothbrush: it will represent one more efficient tool in your PD armory. 

Here's a Parkinson's Foundation site with thoughts and audio clips on exercise.  

I am still enjoying my Threshold sports mini bike that I use while seated on a chair. It is available locally. 

And finally, till next time dear reader, on a sound note, here's a site with fourteen musicians with PD! Stay well...

(36) My Parkinson's positives: 2013-2022

Words, words, words...

In 1958 I went to the The Good Shepherd, an English-medium primary school in the Eastern Cape. The mother-tongue of the children was either English, Afrikaans or Gujarati and I also learnt to read and write in Tamil at home (I cannot, anymore). Then, I attended an Afrikaans-medium high school. At university I majored in English and Drama (including courses in Afrikaans and German). I completed an Honours in Drama as well as a Master's degree on Adam Small, a South African playwright who wrote mainly in Afrikaans. 

My first teaching post was at the University of Zululand (1980), where I was sensitised to isiZulu and how different it was to English. Most important was the impact of one's mother-tongue, such as isiZulu, on one writing in an acquired language, such as English.

As I had been exposed to a number of languages in my life, I became critical about the impact of English on speakers of other languages, so I focused on language and writing in my career and research. Between 1988-2001, I explored ways of facilitating the English writing process for undergraduate students, whose mother-tongue was not English. From 2001, my focus shifted to assisting academic staff with their writing, leading to a PhD in 2007.

Literacy skills - particularly reading and writing - have always fascinated me, which is why I am grateful that, after having Parkinson's for ten years, I am still able to think, compose and type. Today, we will zoom in on my "handedness".

Incidentally, the Tamil script equivalent of my full name, "Arungasen", is "அருங்கச்சென்" (courtesy of a website). It looks vaguely familiar, dear reader, but I am unable to verify this, so...

Optimism: what's left to go, right? 

From the time I was diagnosed with Parkinson's Disease (PD) in 2013, I opted to stay Parkinson's-drug-free. At the time, I read extensively on the subject and was concerned with the possible and unpredictable side-effects of PD drugs. 

As PD appears to facilitate one's stress and anxiety, I have been consciously trying to focus on purely feel-good moments while also celebrating the gains in my PD life. Some positives (+) are below.

+ Positive News site. In keeping with this thinking, I subscribe to the Good Things Guy, a South African good news site. I get a weekly email with links to South African news to warm my heart. 

+ This Blog. Another positive is my typing, specifically related to learning to type with my left hand (a function that includes five left fingers and at least one finger from my right hand). This skill has developed over the last four years, and is worth noting, considering that I was born with a dominant right hand (see Neuroplasticity in post 28). The most productive thing I have done since retiring is to have produced this blog that has attracted people to visit the site regularly. Two general observations follow.

1. Numbers. During the past 28 months, since the launch in May 2020, there has been a total of 1701 views of my Blog (these are views as I have to assume they have read either part or all of my posts). Each of the 35 posts' viewership has varied between 20 and 60. 
2. Location. Most of my viewers are local and the rest are overseas. During August 2022, for instance, out of a total of 49 viewers, about 37% (18) are overseas [Russia (14), Ireland (2) and Greece (2)] while about 63% (31) are in South Africa.      

+ Handwriting. This is something I have valued as one who used to love to write and collect pens and pencils. Neurologists observe handwriting to determine whether one has a movement disorder such as PD. A simple test consists of writing a sentence, e.g. a nursery rhyme, and drawing an Archimedes spiral. Another is a comparison of writing or letters of the alphabet on lines and without lines. These tests are done in the context of Parkinson's tremors, stiff fingers and involuntary quivers.  Below are a few examples produced at home, seated at my desk, relaxed.  

1.  The paper is only 7.5cm square and I used a ballpoint pen for the writing and the Archimedes spiral. Enlarged, the writing appears to have been done with a shaky hand. 

OBSERVATION: I struggle to fill out forms in public, unless I'm able to control the lighting and surface on which I can write as clipboards are terrible! At home I am relaxed, while I am anxious in public. For instance, this week I attended a Parkinson's ZA occupational therapy workshop in Durban. My caregiver had to fill out the one-page registration form for me as I was unable to do this on a clipboard. (Sigh!)  

 
  

2. I wrote this last month using a Yoken felt-tipped calligraphy pen. I used to enjoy calligraphy but do not appear to have the patience for it anymore. I used a ruler to draw the lines, each one 4cm wide, on which I wrote. The paper is a normal A4 size sheet 21cm X 30cm. 

OBSERVATION: I surprised myself when I produced this, one line a day over five days. I was curious about my ability to write neatly and now it has been satisfied! Again, it was done at my desk and I was relaxed.    

 

+ Hand "dominance". There is a documented notion of mixed-handedness or "cross-dominance" which may describe what is going on with me (see Posts 8 and 28) regarding my left-right hand use. However, this describes a negative attribute when it occurs in children. These labels describe one favouring either the left or right hand, often in sport, leading to a "slowing" down of the brain function. Consequently, such labels often have a negative connotation when associated with children whose brains are still forming. 

In my case, a 70 year old adult, the following are estimations of my present state of handedness, where "LH" refers to my left hand, "RH" refers to my right and "pre-PD" refers to my condition before diagnosis in 2013. Below, is my list of the not-so-magnificent seven acts, monitored over the past seven years! I have listed these seven acts as they are based on my long-term observations.

• HANDWRITING.............:  RH (exclusively).................(pre-PD: same) 
• BRUSHING TEETH........:  LH (80%) + RH (20%).......(pre-PD: reversed)
• BRUSHING HAIR...........:  LH (80%) + RH (20%).......(pre-PD: reversed)
• SOAPING MYSELF........:  LH (80%) + RH (20%).......(pre-PD: 50%/50%)
• DISHWASHING..............:  LH (mostly).......................(pre-PD: reversed)
• TYPING (KEYBOARD)..: LH (80%) + RH (20%)........(pre-PD: reversed)
• MOUSE (COMPUTER)..:  LH (exclusively)..................(pre-PD: reversed)

The handwriting and ability to write has remained a constant, probably because of the complex processes connected to the act of writing. The handedness of the other six acts has been changed by my PD: what I like to call my "hijacked dexterity" 😒.  

   

Without PD chronic meds, what's left?

Well, if "chronic" means something that is persistent and generates effects that are long-lasting, then PD fits the bill. Being parkinsed also means that most PD people should take chronic medication for a long period. That also means that PD people taking chronic medication have to endure the possible side effects of such medication. NB: I respect and admire the courage of all my PD acquaintances who are on chronic medication!!!   

It is well documented that the most commonly prescribed drug for Parkinson's Disease is L-dopa/ Levodopa/Carbidopa/Sinemet/etc. This drug encourages the brain cells to convert its ingredients into dopamine, which, as we know, is in short supply due to the presence of Parkinson's. The result of such a conversion is that our dopamine supply is restocked so that we return to some form of normality. 

 In the world of nature's alternatives to drugs, there is a tropical bean, called mucuna pruriens. I've mentioned this before in posts 24 and 35. These beans contain natural levodopa that, unfortunately, is poisonous if ingested in its pure form. However, it has been extracted and used in ancient Chinese and Indian medicine for many centuries, including Ayurvedic regimes. For the curious reader, there are two research papers that look into this (Paper 1 & Paper 2). 

That's all for now, dear "viewder" 😁.  Till next time, take care.