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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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‘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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‘Non-motor Features of Parkinson’s Disease’ explained by Neurologist Dr Paul Silberstein

Next in our series of blogs on Parkinson’s disease, Movement Disorder Neurologist, Dr Paul Silberstein explains the non-motor features of Parkinson’s disease, which include anxiety, changes in speech and bladder difficulties.

Parkinson’s disease is best known for the physical manifestations of the condition which include slowness and stiffness of movement, tremor and walking difficulty.  Indeed, these physical symptoms continue to form the basis for the diagnosis of the condition.

In addition to these physical symptoms, we now recognise that Parkinson’s disease can cause a variety of additional difficulties in non-motor domains.  These non-motor features include anxiety, changes in mood, speech and swallowing impairment, bowel and bladder difficulties and sleep impairment.  After many years of PD, some patients experience changes in their thinking or cognitive ability.

These non- motor features of Parkinson’s disease can have a major impact on wellbeing.  Fortunately, many non-motor symptoms can be treated effectively with medical therapy.  Some, like anxiety and sleep impairment may respond to the same treatments used for motor symptoms.  Others, like mood alteration may respond to exercise, psychologic interventions or different classes of medication such as antidepressants.

Non-motor symptoms can wax and wane in their intensity through the course of PD, but often remain treatment responsive many years after the diagnosis.

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The New YOP-X app Is For People Newly Diagnosed With Parkinson’s Disease

Parkinson’s Australia have just launched YOP-X, a free app for people newly diagnosed with Parkinson’s disease. This app is a world first, and includes tools which have been uniquely shaped by the first-hand experiences of people living with Young Onset Parkinson’s.

In this article by Alexandra De Vylder at Aged Care Weekly, Geoff, who is committed to positivity throughout daily battles with his Parkinson’s Disease, talks about how’s he’s determined to share his knowledge through the YOP-X app.

Geoff had a big smile on his face when he was diagnosed with Parkinson’s disease. He was just 50 years old.

“It was the first time in six years I actually had an answer,” he told me 14 years later. “I actually apologised to the doctor. I said, “I’m not happy that I have Parkinson’s, but I’m happy I’ve got a name I can now work with”.”

Geoff had spent the last six years with severe balance issues so that he could barely walk down the street. Finally, he knew what he was dealing with.

But he soon realised what he was in for. His doctor prescribed him drugs and told him what to expect for the rest of his life.

“All that was very negative. It was like, within three years you’ll be looking at early retirement, within four or five years you won’t be driving a car, within 8 years you’ll be needing mobility devices to get around. Within eight years you’ll have maxed out on drugs and you’ll be looking at alternatives like Deep Brain Stimulation.

“I haven’t ticked any of those boxes.”

Now, at 64, Geoff cycles between 200 and 450 km every week. He’s a team leader at his design job and gives presentations about living with Parkinson’s as a Parkinson’s Victoria ambassador.

Parkinson’s app helps people like Geoff

Experts are now more aware of ways to manage Parkison’s so people can live full and productive lives. Now there’s a free app that helps people navigate the condition.

The app, called YOP-X, focuses on key aspects of life with Parkinson’s Disease, including exercise, nutrition, mental health tools, relationships, and work. Neurologist Dr Paul Silberstein worked on the app other experts to support people post-diagnosis.

“We know that most patients with typical Parkinson’s disease will have a very robust response to medical treatment,” Dr Silberstein said.

“Generally speaking, for newly diagnosed patients, we would expect their physical function to improve by 60 to 80% (with treatment). Again, that effect can be further augmented by things like exercise and mental health strategies.

So most people with Parkinson’s disease will live very well with the condition for many years.”

Dr Silberstein said the app is relevant to anyone with Parkinson’s, even though it’s tailored to people with Younger Onset Parkinson’s Disease.

Is exercise a Parkinson’s Disease treatment?

At first, Geoff didn’t know that exercise could help him. It was only after a trip to the gym a year after diagnosis that he realised cycling on a stationary bike relieved his symptoms.

“I found that riding on those for twenty to thirty minutes, released all the stress and rigidity of my legs and the pain disappeared. I could actually walk a lot better for a few hours afterwards.

He progressed to road bikes with big tyres to help him balance. Now he rides voraciously on an “almost normal” bike as well as doing regular gym sessions, tai chi, and yoga.  

“It gave ownership back to me a little bit.”

Research

shows that exercise improves mobility and balance, mood, sleep, and relieves pain and constipation. Parkinson’s researcher Professor Colleen Canning writes that “high intensity exercise and exercise that challenges thinking and movement” can directly impact brain function. She recommends at least 30 minutes of “at least somewhat hard exercise on most days” to reap the benefits.

Dr Silberstein said mental health management is another major part of living well with Parkinson’s.

“About 50% of people with Parkinson’s disease will experience at some stage a clinically diagnoseable depressive illness. And typically, about 50% of people will suffer anxiety. And so, management of those aspects of the condition is very important to people’s overall health and quality of life.

“Certainly for mental health, both within and outside of Parkinson’s, exercise also clearly has beneficial effects.”

It’s not easy, but attitude is key

Coping strategies are key for Geoff, who is committed to positivity throughout daily battles with his condition.

“Each day you get up, and you just check yourself in, as in what sort of day is this going to be? and you know very quickly.

“In a lot of ways you’ve just got to accept that it’s never going to be constant, it’s never going to be the same as yesterday or tomorrow.”

Geoff had to find answers on his own, and now he’s determined to share his knowledge with others through the YOP-X app.

“Everything I’ve learned about Parkinson’s is through research. Ploughing in. And it was dogged. I had to really fight to try and get as much information as I could.

“There was so much I learned along the way. I just want to short cut it so that people don’t lose that drive and that initiative.”

The YOP-X app is free to download.

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Deep Brain Stimulation Support Group Online Webinar

The North Shore Private Hospital Deep Brain Stimulation (DBS) support group is moving online and will be holding its first meeting on Tuesday 30 March at 7pm as a zoom webinar. Movement Disorder Neurologist, Dr Paul Silberstein will be the keynote speaker and will be talking about new innovations in Deep Brain Stimulation. This will be followed by a panel discussion with Dr Raymond Cook, DBS Neurosurgeon.

Both doctors will be available to answer questions submitted on the webinar chat or previously by email. This is a great forum to communicate directly with experts in the field. The support group is open to patients already treated with DBS, their relatives and carers and anyone interested in learning more about DBS.  

To register for the webinar, go to
https://www.northshoreprivate.com.au/Our-Services/Community-Information-Sessions or email Carmen at mollerc@ramsayhealth.com.au

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Caring for Carers

As the carer of a loved one or friend with Parkinson’s Disease, you make a tremendous difference. Being a carer can be exceptionally fulfilling but also highly demanding. Fortunately, there are a number of strategies and support networks available to help you provide the best possible care, and look after yourself too.

Here are some approaches to consider:

Define your role

Chances are, you won’t be the only person involved in your loved one’s care. Speaking to the other support staff and carers to determine your responsibilities can help you to define exactly what’s expected. Writing down your key roles and those of others can help to create a sense or order and make it easier to know who to turn to when new challenges arise.

Be flexible

As the condition of the person you care for changes, your role as a carer will change, too. You may need to learn more about dispensing medications or become more involved in daily activities such as dressing, eating and washing. Being ready for change can make transitions feel easier.

Take time for yourself

Make sure you take time away from your caring duties to focus on your health and have regular ‘you’ time. Life as a carer can be difficult and overwhelming, and you shouldn’t feel guilty for taking a break. If necessary, consider enlisting the help of other family members or bringing others in to help you in providing care.

You may wish to talk to the doctor treating the person you care for if you need assistance with your caring duties or if you are feeling overwhelmed. Speaking privately with your own doctor can be helpful too.

In Australia, you can talk with the GP of the person you care for about setting up a Government funded Aged Care Package or (for younger patients) about a support package through the National Disability Insurance Scheme. There are many private organisations that can also provide assistance if this is affordable.

Often, carers are reluctant to seek out or accept outside help, but usually extremely relieved when they do. Sometimes just a few hours of regular, reliable respite can make a wonderful difference for both you and the person you care for.

Focus on healthy living strategies

Maintaining a healthy lifestyle will keep your mind and body healthy so you can feel prepared for any challenges. Remember to:

  • Eat a healthy diet
  • Exercise regularly
  • Get enough sleep
  • Consider reducing your alcohol intake

Learn about Parkinson’s Disease

Knowledge is empowering. Learn more about Parkinson’s Disease so you can anticipate changes in the symptoms or behaviour of the person you care for. As a carer, you may find that knowing what to expect at different stages of the disease can help you to manage new situations as they arise.

Empower your loved one

As the carer, you don’t have to do everything all the time. Talk to the person you care for about how involved they want to be in their care, and encourage them to do what they can. If necessary, you might allow for more time to get these tasks done, so that they can maintain a level of independence for as long as possible.

Find a support group

Speaking to other people in similar circumstances can bring comfort, strength and new ideas. Links to a few Australia based support organisations are listed below:

Parkinson’s Australia https://www.parkinsons.org.au/for-carers

Parkinson’s NSW http://www.parkinsonsnsw.org.au/about-parkinsons-disease/caring-for-someone/

Carers NSW Australia https://www.carersnsw.org.au/how-we-help/support/csg/

References

The information provided in this article is of a general nature only and is not treatment advice. Recommendations regarding therapy can only be made on a case by case basis, discussed between a patient and their treating doctor(s).

The information in this article was current at March 2019.