I’ve written about Parkinson’s Disease (PD) in 2020. As I journey with my husband who is living with the disease, we’ve learnt more about the disease through other avenues than the doctor whom we are seeing. Talking to other people living with PD, we found out that we are not the only ones in this predicament. Hence, I am sharing what we’ve learnt over the past few years to you in this article as we continue to journey our lives with the disease in 2023.
- Not all neurologists and doctors are the same
From chatting with a neurologist in France (http://linkedin.com/in/christian-geny-b3596767), we found out that there are generally differing beliefs and practices among the neurologists internationally. He generalised them including himself into two categories:
(A) The typical doctors who are trained in disease management using pills and procedures. Most of them are not interested in listening to and understanding your daily challenges but are interested in prescribing more medication to control the progressively annoying symptoms
(B) Those who are in favour of reducing your medicine to a level where you feel best about your symptoms because they listen and understand your challenges and are interested in maintaining your quality of life and sense of well-being as your disease progresses. Knowing the limitations of medicine on PD, their side effects and the ill-effects of polypharmacology, they include other non-medication treatments in their list of ammunition to combat Parkinson’s with you such as exercise – holistic medicine.
My husband’s experiences with the neurologists in Singapore have been largely Type A, maybe they are very busy and could not afford the time to listen and understand, or they’ve grown to favour the art of prescribing medicine over the art of practising medicine over the course of their career. Although luck seemed to be on our side with our recent change in neurologist. Fingers crossed, it would be too premature to judge based on one consultation. We hope that he will turn out to be the Type B neurologist in Singapore whom we are comfortable to journey with. Please let us know if you’ve found one.
- The King is
your doctorYOU
Too many patients in Singapore take their doctors’ words and prescriptions like the gospel, always saying yes and hardly ever questioning them. Doctors are not the ones living with the symptoms and the challenges. You and your caregivers, your loved ones are the ones having to live with the symptoms and the challenges on a day-to-day basis. Even your loved ones, who are with you every day, are not able to experience the sensations and effects of your symptoms and your treatment. YOU are the only one who is experiencing these sensations and effects. Your experience would be different from your friend who is also living with PD. Hence, YOU have to be an active participant in your care – actively monitoring, evaluating and providing feedback about how you feel, what’s happening internally within you – to be able to optimise the treatment and manage the symptoms. Mindfulness plays an important role here. You need to learn to be more aware of your bodily sensations in order to form a good judgement on the efficacy of the treatment and the need to change or titrate the treatment. YOU decide on the best treatment regime after being informed by your doctor, and not be dependent on your doctor to decide on the treatment regime alone. Your sense of well-being depends on you alone, others around you are your cheerleaders and team members but you have to do the work and make the calls. Your doctor works with you in your journey living with PD. In fact, your doctor works for you as you are paying part of their salary! They should be spending time answering your questions, addressing your concerns and providing pertinent information for your decision making because they have the expertise which you, the patient, lack. All my friends who are doctors complain about the high caseload and the pressure of time. I feel for them. Maybe they may refer you to a health coach who is trained in this area as health coaching becomes more mainstream in healthcare in Singapore. At the end of the day, healthcare should not be making their systemic problem yours, living with PD is hard enough.
- Not only the four hallmark symptoms
Slowness, rigidness, tremors and postural instability are the four classic features of PD. There are many other symptoms including the non-motor symptoms which I wrote about in 2020 (https://dementiahelp.sg/is-parkinsons-disease-the-same-as-dementia/). Two things I want to bring to your attention here: the psychological and cognitive symptoms and the ‘axial’ motor symptoms.
PD is not only a degenerative motor disease, it weakens your axial muscles – the muscles arise on the axial skeleton (head, neck, thorax, abdomen, and pelvis) and make up about sixty percent of your skeletal muscles. You need them to properly position your head and spinal column, move your rib cage so that breathing is possible. Axial motor symptoms include postural instability, gait and balance deficits, difficulties with speech, and/or swallowing. These axial motor symptoms lead to the loss of independence and/or mobility, and high healthcare cost.
Picture source: Marieb, E. N., Hoehn, K. (2018). Chapter 10: The Muscular System in Human Anatomy & Physiology (11th ed.) . Pearson. Pg 350-401. https://www.pearsonhighered.com/assets/samplechapter/0/1/3/4/0134396405.pdf
You need to strengthen these muscles before they start losing power and getting weaker. Frailty is going to kill you faster than PD itself! It’s critical that you maintain your muscles, and start building more muscles while you still can. Walking is a good start to exercising and maintaining muscles, more importantly you will need strength training to maintain those muscles, your independence and to better manage your symptoms just like Jimmy Choi in the following video (https://www.youtube.com/watch?v=xgRDYZoUnac).
Vocal training with trained therapists will help you to maintain your neck and thorax muscles which will go a long way to ensure that you will be able to swallow and speak intelligibly for a long time to come. Take up vocal training even when you are speaking and swallowing fine at this moment. Vocal training will help to maintain those muscles.
Flexibility exercises are a must for my husband on a daily basis to reduce rigidity. There is no cure for PD at this moment, therefore, you are your best cure. Only you can decide on the amount of time and effort that you are going to spend on a daily basis to work on the various lifestyle, non-medication interventions, only you can put those decisions into your own hands.
- You are not alone
Parkinson’s disease has a negative impact on your level of dopamine which in turn impacts other neurotransmitters – hence, impacting your mood. It is naturally to feel lost, and could not accept your diagnosis as Jimmy did, thus deciding to do nothing about it. Don’t! Doing nothing will let PD eat away your body, your muscles, and your independence faster than normal ageing, faster than you could imagine.
Get engaged! “
“Get engaged in the community. Get engaged in the fight. Get engaged in research. Get engaged in clinical trials… Involvement has its own rewards.”
Fox, M. J, 2018
Connect with others with Parkinson’s disease in Singapore, get up and start moving together. Besides exercising, and eating better, socialising is an important part of living well with Parkinson’s . These will help you combat PD like what my husband did (https://www.youtube.com/watch?v=XUEVFZJKr3Y&t=329s).
There is currently a PD@The Ring every Friday from 1-2pm. This is a group boxing session for people living with PD. Reach out to us at ECI if you are interested – https://workhappy-eci.com/support-us/
Reference List:
- O’Gorman Tuura, R. L., Baumann, C. R., Baumann-Vogel, H. (2018). Beyond Dopamine: GABA, Glutamate, and the Axial Symptoms of Parkinson Disease. Frontiers in Neurology, 2018, 9. Marieb, E. N., Hoehn, K. (2018). Chapter 10: The Muscular System in Human
- 2) Anatomy & Physiology (11th ed.) . Pearson. Pg 350-401. https://www.pearsonhighered.com/assets/samplechapter/0/1/3/4/0134396405.pdf Accessed on 10 Jan 2023
- Blanchard, s. (2005). 3 – ANATOMY AND PHYSIOLOGY. Editor(s): John D. Enderle, Susan M. Blanchard, Joseph D. Bronzino, In Biomedical Engineering, Introduction to Biomedical Engineering (Second Edition), Academic Press, Pg 73-125, https://www.sciencedirect.com/science/article/pii/B9780122386626500057. Accessed on 10 Jan 2023.