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