Living with Parkinson’s disease: Taking control of your Parkinson’s disease management.

Living with Parkinson's Disease guest post by Joshua Sandler from Sandler Physiotherapy and Rehabilitation for Fish and Field Biokinetics, Bryanston, Sandton.

Neurological disorders are diseases of the central and peripheral nervous system. They involve both the brain and nerves found throughout the human body as well as the spinal cord. Some appear suddenly, such as a stroke; some are present from birth, like epilepsy; and others develop gradually over time, as with Parkinson’s. We invited Neuro Physiotherapist Joshua Sandler from Sandler Physiotherapy and Rehabilitation to share his advice on “Living with Parkinson’s Disease” with our readers in the month’s article

Living with Parkinson’s disease: Take control of your life by taking control of your Parkinson’s disease management.

Guest Post by Joshua Sandler

As a neurological physiotherapist, I have had the privilege of working with patients who have Parkinson’s disease for over a decade now. I have seen many patients being “disabled” by just receiving the diagnosis, even though they barely show any major signs of the condition. Mentally, they feel defeated by the diagnosis and yet there is still so much that is in their control to manage their condition. The aim of this article is to give hope to those that have just been diagnosed and to motivate those living with it.

My passion for Parkinson’s disease rehabilitation comes from my personal experience with my incredible patients. I have been able to witness their progression through using the best evidence-based practice guidelines, which are needed in the management of this debilitating condition. For over a decade I had the privilege of working closely with one of the leading movement disorder specialists in SA, Dr. David Anderson. Working with such an exceptional neurologist was a catalyst for my passion for the disease. His approach to Parkinson’s disease management using medicine and exercise helped forge a team of multiple disciplines in the management of these patients.

When you consider the complexity of the disease it is no wonder that it takes a team, rather than an individual professional to help optimise the quality of life for these patients. We work closely with neurologists, neuropsychiatrists, psychologists, biokineticists and occupational therapists to help ensure that a holistic approach is being utilised to manage this condition.  

How do we manage our patients?

I personally feel the battle against the disease begins in the mind. The patient needs to understand that they have it in their power to manage their condition rather than the condition managing them. From the first appointment I tell my patients the following:

Firstly, Parkinson’s disease does not define who they are but rather it is just a part of their life. This is important because one must not let the diagnosis disable you before the disease does.

Secondly, the management of this disease is in their control. You as the patient have to be an active participant in the management of the disease rather than a victim of it.

Lastly, rehabilitation cannot be your life. Like in all things in life, we need a balance. Too much exercise can be just as detrimental as too little. Find your balance, work together with your team to set up the best rehab program for you. Please always remember, you need to live your life and do what you can while you still can, before you can’t.  

Following this initial discussion, we undergo a thorough assessment and create a specific rehabilitation program for each and every patient that we see. At my practice, I see predominantly Parkinson’s disease patients, however no two patients are the same, therefore no two programs are the same. We treat and work on what the patient presents with. I always explain to my patients that rehabilitation is like a jigsaw puzzle. Slowly we put the pieces together, week by week, to try to get our patients to their optimal functioning and to live their best lives.

How do you be an active participant in your management?

Firstly and most importantly is medical management. Your medication must be taken correctly and on time as specified by your neurologist. I cannot stress how important this is. If medication is taken incorrectly or at the wrong times, it can make a manageable day into a very difficult one for the Parkinson’s patient.

Important things to remember are that levodopa drugs such as Sinemet, Carbi-levo and Madopar should be taken on preferably an empty stomach. More specifically it is important to have no protein for an hour before and even preferably after taking these medications. This is because the protein (if present in your stomach) affects the absorption of these drugs. It is also important to remember that the tablets will only be effective for a specific time duration and therefore it is important to take them at the intervals that your neurologist has indicated. It normally takes about 30mins for the medication to start taking effect and the effective time is normally around 3-4 hrs (this varies from patient to patient according to the severity of the Parkinson’s and the dosage of the drugs).

Secondly, and this is where we come in, and that is to do your exercises.  

What exercise do we do to help you manage your condition?

I believe that you are more likely to benefit from our rehabilitation and more likely to continue the rehabilitation at home if you enjoy it. We try to make sure the rehabilitation is fun, challenging and not monotonous. So essentially we do exercises that get the movements we want in a more functional and enjoyable way. We do this by using obstacle courses for balance and coordination, tennis type exercises, boxing, balance rehabilitation using computer games connecting to a wobble board, soccer, dancing, adaptive yoga, and various other ball activities that utilise multitasking and therefore ensure higher cortical involvement. We also utilise a fantastic system called Blaze pods. These pods light up according to the program setting and allow an interactive “game” like a challenge that assists in movement, coordination, balance and cognitive rehabilitation.

We know that learning of movement patterns doesn’t just happen through repetition but rather through putting you through challenges that require adaption, changes and modulation of movement, therefore preparing the patient for real-world challenges. At my practice, we use evidence from research to guide us on the best interventions to use. Along with neurorehabilitation on land, I find that hydrotherapy is an amazing adjunct therapy to our physiotherapy. Where patients are limited on land, water opens up their world to do things that are not easy or even possible out of the water. Hydrotherapy gives the patient the freedom to move like they do not have on land. I often refer my patients to hydrotherapy and not only do the patients love it, but the benefits can also be seen in the carryover to our sessions.

Exercise is Medicine

Exercise is medicine and we can never underestimate the benefits physically and mentally when tackling such a challenging disease. The benefits of exercise were highlighted to me over the last year of lockdown. Many of our patients had not received neurorehabilitation or any exercise intervention for months or even for some of my patients, over a year and the decline in their conditions was notable and often quite catastrophic. The good news was that it was often unlikely just the disease deterioration but rather the inactivity and often psychological co-morbidities such as depression and anxiety that were responsible for the rapid declines. Once a regular rehabilitation program was started again the progress of these patients has been amazing.

Please don’t underestimate what you can achieve through the correct medical and exercise interventions in the management of your Parkinson’s disease.

Living with Parkinson’s Disease

Always remember that a disease doesn’t define you and that you can live a very happy for fulling life with Parkinson’s, you just have to play your part in managing the condition. With this said, I know that this is a very challenging condition, and it is not an easy one to manage for the patient or their loved ones. It does come with many challenges, physically and mentally but we as health care professionals are always here for you and will share this journey with you.

Living with Parkinson's Disease guest post by Joshua Sandler from Sandler Physiotherapy and Rehabilitation for Fish and Field Biokinetics, Bryanston, Sandton.

Joshua Sandler | Sandler Physiotherapy and Rehabilitation

My name is Joshua Sandler and I am a neuro physiotherapist. I run an outpatient neuro practice based in Craighall, called Sandler Physiotherapy and Rehabilitation. I studied at WITS University for both my undergraduate and postgraduate degrees. I have over 10 years of experience in treating neurological conditions and even though I treat all neurological conditions, I do have a passion for movement disorders and functional neurological disorders (FND). I am one of two neuro physiotherapists that form part of two multidisciplinary teams based at Donald Gordon Medical Centre. The first of those teams is the FND MDT and the second is the deep brain stimulation MDT.
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