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Dr Paul Silberstein

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Young Onset Parkinson’s Exchange (YOP-X) app and website

The Young Onset Parkinson’s Exchange (YOP-X) App and website is a world first information portal and resource hub supporting people with young onset Parkinson’s diagnosed under the age of 65.

Developed as a living lab model, the experiences, ideas, knowledge and daily needs of people with young onset Parkinson’s have underpinned all App and website content, with more than one hundred individual stories and experiences shaping tools and resources.

Movement Disorder Neurologist, Dr Paul Silberstein, was an expert panel member on the working group that created the app. Dr Silberstein worked alongside patient representatives and their partners from around Australia, web developers and project lead, CEO of Parkinson’s SA, Olivia Nassaris.

YOP-X also provides a fast track for people with young onset Parkinson’s to collect and collate information relevant to their NDIS applications. More information is in the below video or go to www.youngonsetparkinsons.org.au. To download the App, go to the Apple App store or Google Play.

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‘Medications in Parkinson’s Disease’ by Dr Natalie Palavra and Dr Paul Silberstein

Next in a new series of blogs titled ‘Living Well with Parkinson’s Disease – Sorting the Motherhood Stuff’, Drs Natalie Palavra and Paul Silberstein discuss ‘Medications in Parkinson’s Disease’.

Dr Palavra introduces the blog in this short video.

Why is medication adherence important in PD?

Together with exercise and maintaining overall wellbeing, medications are a key component in managing Parkinson’s Disease (PD). Irregular medication timetables or missing medication doses can lead to poor symptom control, such as worsening tremor and fluctuations in motor symptoms. It can also affect quality of life, sleep, mood, fatigue, cognition and other non-motor features of PD.  

PD medications work best when taken at fixed times throughout the day.  Sticking to a regular regimen can be difficult, but doing so is the one of the best ways to optimise symptom control.

Useful tips to improve adherence to your medication regimen

  1. Reminders

Set an alarm on your phone or smart watch to remind you to take your medications at the same time every day. Use the snooze button for times when taking medication is impractical. This way you will be reminded again in a short period of time. Only turn off the alarm once you have taken the dose.

Set reminders in your diary to fill your prescriptions on time.

2. Medication aids

Consider preparing pillboxes or a pharmacy-prepared Webster pack. Be sure to take your medications with you when you go out.

3. Simplify the regimen

Talk to your doctor about simplifying your medication regimen. For example, ask whether there are other treatment options, or whether long acting or slow release medications might be a good option for you.

4. Tailor your regimen to daily habits

Think about ways to fit in your medications around your daily habits such as when you first wake up, around meal times, before going to work, brushing your teeth etc.

5. Involve family members / carers

Sometimes involving family or carers in dispensing your medications on time can be helpful.

6. Take control!

Empower yourself with knowledge about your treatment.

References

Straka, I. et al. Adherence to Pharmacotherapy in Patient With Parkinson’s Disease Taking Three and More Daily Doses of Medication. Frontiers in Neurology (2019) 10, 799.

Fleisher, J., Stern, M. Medication Non-adherence in Parkinson’s Disease. Current Neurology and Neuroscience Reports (2013),13(10).

Shin, J., Habermann, B., Pretzer-Aboff, I. Challenges and strategies of medication adherence in Parkinson’s disease: A qualitative study. Geriatric Nursing (2015), 36 (3), 192-196.

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‘Exercise in Parkinson’s Disease’ by Dr Natalie Palavra and Dr Paul Silberstein

Next in a new series of blogs titled ‘Living Well with Parkinson’s Disease – Sorting the Motherhood Stuff’, Drs Natalie Palavra and Paul Silberstein discuss ‘Exercise in Parkinson’s Disease’.

Dr Palavra introduces the blog in this short video.

Exercise in Parkinson’s Disease

Why is exercise important in Parkinson’s Disease?

Exercise is one of the best treatments for Parkinson’s Disease (PD), and is recommended at all stages of the condition. Research has shown that starting to exercise early in the course of PD and exercising consistently can improve quality of life and symptoms. Some research has shown that regular exercise may potentially modify the disease process in PD, not only during established disease, but even in the years before it is diagnosed.

Some research studies have found numerous short-term and long-term health benefits of exercise in PD. Exercise has been shown to improve motor symptoms (such as rigidity, slow movements, balance, strength) and non-motor symptoms (such as constipation, cognitive decline, anxiety, depression). Most importantly exercise may improve quality of life, with research finding that adults with PD who exercise at least 2.5 hours per week have better quality of life.

Some tips that may be helpful:

  • PD affects patients differently – a tailored program, perhaps prescribed by an exercise physiologist or physiotherapist may be best to meet your needs.
  • Many types of exercise have been shown to be beneficial in PD including aerobic exercise (e.g. biking, running), flexibility exercises, resistance training, Tai chi, non-contact boxing, and many more. Mobility, strength and flexibility are all important components.
  • Participating in exercise groups can improve quality of life and provide a way to connect with others.
  • An exercise program can teach strategies to help prevent falls, control freezing and improve other symptoms.
  • Try to exercise consistently, at least 2.5 hours per week.

References

Parkinson’s Foundation. Parkinson’s Outcome Project. Retrieved 31 July 2021 from;

https://www.parkinson.org/research/Parkinsons-Outcomes-Project

Rafferty, M.R., Schmidt, P.N., Luo, S.T. et al Regular Exercise, Quality of Life, and Mobility in Parkinson’s Disease: A Longitudinal Analysis of National Parkinson Foundation Quality Improvement Initiative Data. Journal of Parkinson’s Disease, (2017) 7(1), 193-202.

Crotty, G.F., Schwarzchild, M.A. Chasing Protection in Parkinson’s Disease: Does Exercise Reduce Risk and Progression? Frontiers in Aging Neuroscience. (2020) 12:186. doi: 10.3389/fnagi.2020.00186.

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‘Constipation in Parkinson’s Disease’ by Dr Natalie Palavra and Dr Paul Silberstein

First in a new series of blogs titled ‘Living Well with Parkinson’s Disease – Sorting the Motherhood Stuff’, Drs Natalie Palavra and Paul Silberstein discuss ‘Constipation in Parkinson’s Disease’.

Dr Palavra introduces the blog in this short video.

What is constipation?

Constipation occurs when bowel movements become less frequent or stools become more difficult to pass. Constipation is generally defined as less than 3 bowel motions per week, but the exact number can vary depending on what is ‘normal’ for you. Other features of constipation include passing hard stool, straining or experiencing a feeling that the bowel is not completely empty after a motion.

Why is constipation important in PD?

Constipation is one of the most common features of Parkinson’s Disease (PD), affecting up to 79% of patients. Many patients experience constipation for many years before being diagnosed with PD. It is important to manage constipation because it may cause discomfort and impair absorption of PD medications, leading to poor symptom control and impaired quality of life. If not managed, constipation can lead to more serious complications.

What causes constipation in PD?

Constipation is part of the disease process in PD, and results due to alterations in gut motility. Gut bacteria may also play an important role in PD. Low water intake, inadequate physical exercise and certain medications can all contribute to constipation in PD.

Treatment of constipation in PD

The good news is that there are many strategies that can be used to improve constipation. Changes to diet and lifestyle can result in significant improvement. A variety of medications can be helpful if diet and lifestyle changes are insufficient.

  1. Diet and lifestyle
  2. Increasing water consumption and avoiding liquids that can dehydrate (e.g. caffeine, alcohol) can be helpful.  You should discuss whether this is suitable for you with your doctor.
  3. Increasing fibre consumption with grains and high fibre fruits / vegetables (with skin on) can also be helpful. Again, prior to commencement, talk about this with your doctor, particularly if you have swallowing issues.
  4. Exercise daily to help activate the gut.
  5. Keep track of bowel motions by keeping a “bowel diary.”
  6. Go to the toilet as soon as you feel the urge.
  • Medications
  • Laxatives are medications used to treat constipation. There are many different types.  Some work by softening or lubricating the stool making it easier to pass. Others work by increasing gut contraction. Discuss with your doctor which one would be best for you.
  • Enemas help to stimulate the gut and are sometimes used when oral laxatives are insufficient.

References

M. Lubomski, R.L. Davis, and C.M. Sue, Gastrointestinal dysfunction in Parkinson’s disease. Journal of Neurology (2020) 1377-1388.

M. Lubomski, A.H. Tan, S.Y. Lim, A.J. Holmes, R.L. Davis, and C.M. Sue, Parkinson’s disease and the gastrointestinal microbiome. Journal of Neurology (2020) 2507-2523.

J.F. Johanson, J. Kralstein J, Chronic constipation: a survey of the patient perspective. Alimentary Pharmacology & Therapeutics (2007) 25, 599-608.

A.J. Pedrosa Carrasco, L. Timmermann, D.J. Pedrosa, Management of constipation in patients with Parkinson’s  disease, Parkinson’s Disease (2018) 4, 6

F. Stocchi, M. Torti. Chapter 27: Constipation in Parkinson’s Disease, International Review of Neurobiology (2017), 134, 811-826.

J.S. Mac Fadyen, G.M. Vernon, Constipation and PD. Parkinson’s Disease Foundation. (2016). Retrieved 12.2.21 from: https://www.parkinson.org/sites/default/files/attachments/constipation_16.pdf

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‘Living Well with Parkinson’s Disease – Sorting the Motherhood Stuff’ by Dr Natalie Palavra and Dr Paul Silberstein

Parkinson’s disease is a complicated condition that can significantly affect movement, mood, thinking, sleep, bladder and bowel function. 

Scientific research is making great strides in our understanding of what causes the condition and actively exploring therapies that may slow or even ultimately cure Parkinson’s disease.

For now, we have an excellent variety of medical and surgical treatments that can provide substantial improvements in controlling Parkinson’s symptoms and improving quality of life. 

These therapies work best when coupled with a keen focus on sorting the motherhood stuff – sleep, exercise, mental wellbeing, bowel function, carer support and strategies to help with taking medications regularly and on time. Improving management in these domains is open to everyone living with PD, and can make a huge difference to symptom control.  Our next series of blog posts explore these simple yet often highly effective interventions.

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‘Natural History of Motor Symptoms of Parkinson’s Disease’ explained by Neurologist Dr Paul Silberstein

Many of the symptoms of Parkinson’s disease relate to a gradual reduction in the ability of the brain to produce a critical chemical know as dopamine.  Indeed this discovery and the subsequent development of medications which increase brain dopamine (dopamine replacement therapy) have remained the mainstay of medical treatment of Parkinson’s disease since the 1970’s. 

Tablet formulations of Dopamine replacement therapy (DRT), taken alone or in combination with one another, reliably improve most motor and some non-motor symptoms of Parkinson’s disease.

Whilst medications may take weeks to take effect after a diagnosis of PD, and some months of fine tuning to achieve optimal benefit, DRT usually results in a substantive and consistent improvement in motor (and some non-motor) symptoms.  In this phase, people living with PD need to take DRT medications between one and four times per day.  Provided patients continue to take their medication, this treatment benefit typically persists for years, often with little need to adjust therapy.

Over time however, the duration of treatment benefit from individual medication doses shortens, such that patients begin to notice a recurrence of motor symptoms – slowness, stiffness, tremor or walking difficulty towards the end of each dose, only to notice a resolution of symptoms as the next dose becomes effective.  This is known as end of dose wearing off.  When this occurs with increased frequency, this variability in symptom control is termed motor fluctuations.

Around this time, some patients also develop excessive and involuntary movements termed dyskinesia. 

Initially motor fluctuations and dyskinesia typically respond to manipulations in tablet therapy, such as increasing dose frequency or adding in alternate dopamine replacement therapies.  Further adjustment of medication regimes may be required over the following months or years to maintain consistency of medication response.

With further progression of PD however motor fluctuations and dyskinesias can become more inconsistent and unreliable. At this stage manipulations in tablet therapy tend to be ineffective in achieving consistent control.

Here a second tier of therapies including apomorphine, Duodopa and Deep Brain Stimulation can be very effective in achieving more consistent control of physical symptoms.