Archive for the ‘Media Center’ Category:

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Parkinson’s nurses in action – Trevor

Parkinson’s Specialist Nurses in action

Parkinson’s Specialist Nurses are highly trained and experienced nurses based in communities of need. They are dedicated to supporting local people living with Parkinson’s.

These Nurses are funded 50/50 by Parkinson’s NSW and the Local Health District in which they are based. This series of articles invites clients to talk about the value of Nurses to their local Parkinson’s community.   


Trevor Lyons – Supported by Vince Carroll and Amanda Buzio

“Vince is a brilliant man,” said Trevor Lyons as he explains the importance of Vince Carroll, a Parkinson’s Specialist Nurse in the Coffs Harbour region.

“I was diagnosed seven years ago at 62, and I pretty well knew to contact the Parkinson’s Support Group straight away,” he recalls. “And that’s how I heard about the Parkinson’s Specialist Nurses. Vince has gone through nearly everything I’ve had as medical problems.

Trevor has a Normal Pressure Hydrocephalus (NPH) shunt to assist in removing excess fluid from his brain.

“When I met with my surgeon, he said to me that I was lucky I was living in Coffs Harbour,” said Trevor. “I asked why – was it because we have nice weather? No, he said, you’re lucky you have Vince there to help you!”

Parkinson’s nurse specialist Coffs Harbour- Vince Carroll

Trevor is also full of praise for the assistance Vince provides for the Parkinson’s Support Group and individuals in the Group.

“The good thing about our Support Group is that you can help one another sort things out, and Vince is there at the end of the day,” said Trevor.

“He is very down to earth and is someone you can speak to about things, man to man. He’s got such a vast range of knowledge of all the different symptoms. Instead of feeling something’s embarrassing, he understands.”

Trevor also finds Vince very helpful in coping with new symptoms and what to do about them.

“Without Vince you’d be forever on the phone to your neurologist and you’d take a lot longer to sort things out,” says Trevor. “He helped me so much when I needed to get the shunt in the brain, and I couldn’t walk or talk before the surgery because of the effects.

Parkinson’s nurse specialist Coffs Harbour – Amanda

“The Parkinson’s Specialist Nurse service is invaluable, and I’m so impressed with Vince’s desire to study further to have as much knowledge about Parkinson’s as possible.”


Parkinson’s nurses in action – Tony and Jenny

Parkinson’s Specialist Nurses in action

Parkinson’s Specialist Nurses are highly trained and experienced nurses based in communities of need. They are dedicated to supporting local people living with Parkinson’s.

These Nurses are funded 50/50 by Parkinson’s NSW and the Local Health District in which they are based. This series of articles invites clients to talk about the value of Nurses to their local Parkinson’s community.   


Tony and Jenny Bienefelt – Supported by Vince Carroll and Amanda Buzio

Jenny Bienefelt had been trying to manage her husband Tony’s severe depression since January 2016 but also suspected he had Parkinson’s.

“I’d been Googling symptoms, but I just wanted to get him through the depression without a double-whammy,” she recalls.

“We live in Coffs Harbour and eventually we saw the fly-in-fly-out specialist in July 2017. He diagnosed Tony within five minutes of us walking in the door. That hit us like a ton of bricks.

“Even though I’d suspected it, we didn’t want to believe it and were in denial. The good thing was he put us in touch with Vince, the Parkinson’s specialist nurse.”

Many months after the diagnosis Tony and Jenny were struggling to find a treatment that would work for Tony, and in desperation contacted Vince for advice.

Vince- Parkinson’s Nurse specialist based in Coffs Harbour

“The depression was setting in again and the treatments weren’t working, which was making the depression worse,” recalled Jenny.

“Tony couldn’t do up his shirt buttons or tie his shoelaces and he was starting to freeze. Vince helped us by organising a neurologist appointment and getting Tony onto Levodopa which has helped a lot.

“All we had to do was to show up for the appointment. He knows so much about Parkinson’s and you’re not alone trying to deal with things.”

Jenny also mentioned how important the Young Onset Support Group is for them both.

“Tony didn’t feel like seeing anyone, but Vince contacted the Support Group leader and asked him to reach out to us which made us feel welcome,” said Jenny. “Straight away we could see that he really cared about us.

“Vince also encouraged Tony to start exercising. Now Tony does the Parkinson’s Warrior program and boxing classes and even got back to playing tennis! When Vince first asked Tony for some fitness goals Tony thought tennis would be too hard. He plays twice a week now.

“Vince and Amanda, the other Parkinson’s specialist nurse, are the complete package. They’re a one-stop shop for support and assistance and answers.

Amanda – Parkinson’s Nurse specialist based in Coffs Harbour

“I feel very sorry for people who can’t access support like this. Even when Tony was rushed to hospital in agony in Easter 2018, a Parkinson’s Specialist Nurse was contacted.

“Amanda appeared and suddenly he was getting the immediate treatment he needed. We are very, very lucky we have people like Vince and Amanda in Coffs Harbour.”


Parkinson’s nurses in action – Nicole

Parkinson’s Specialist nurses in action

Parkinson’s Specialist Nurses are highly trained and experienced nurses based in communities of need. They are dedicated to supporting local people living with Parkinson’s.

 These Nurses are funded 50/50 by Parkinson’s NSW and the Local Health District in which they are based. This series of articles invites clients to talk about the value of Nurses to their local Parkinson’s community.   


nicole Mercer – Supported by Vince Carroll 

Some of our Parkinson’s NSW Specialist Parkinson’s Nurses – Rachael (seated), Nina and Vince

When work opportunities on the mid north coast coincided for Nicola Mercer and her then-partner 25 years ago, they bought an acre of land in the hills near Woolgoolga.

“We didn’t plan to stay so long,” says Nicki, who is originally from the UK and lived and worked in London, Paris, and the Italian Dolomites in earlier years. “But this place sort of gets to you.”

Six years ago, when Nicki was diagnosed with Parkinson’s, she went into shock at the result. “I knew it was something neurological, but the more I Googled the worse I felt,” she recalls.

“For about two years I didn’t contact anyone for support. Eventually I went to one Support Group meeting and was invited to the Christmas party. I didn’t know anyone there and hesitated. But Vince Carroll, the Parkinson’s Specialist Nurse, suggested we meet up at the club before the lunch so that he could explain his role to me.”

This was a breakthrough for Nicki, who had been feeling very unsure because her treatment wasn’t going well.

“Vince has been an absolute Godsend to me,” she says. “I was feeling quite devastated about things. He was very empathetic, but also very practical. He encouraged us to get our wills in order and get our finances sorted out.

Vince- Parkinson’s Nurse Specialist

“He explained about the services and encouraged me to exercise, which is so crucial to managing the condition. He is instrumental in getting exercise classes going and it’s just so important to your health with Parkinson’s.

“I see my exercise physiologist twice a week when I’m able. My balance isn’t good and I’ve been hospitalised five or six times. I’m realising I must take things more carefully.

“I can’t do everything, but I’m back to driving and I’ve taken up gardening which I’d never done before. The acre now has lots of garden. My family is amazed, although my mother and grandmother both gardened.

“Early on I contacted Vince a lot more than I do now. I’m managing much better with a new treatment. When my partner and I split about 18 months ago, Vince encouraged me to keep in touch with my friends and family and not go into my shell.

“It’s so important to keep up with friends, particularly when you’re single and family is overseas. Vince has been very practical and very supportive. I think the Parkinson’s Specialist Nurse service is terrific.”


Parkinson’s nurses in action -Judy

PARKINSON’S SPECIALIST NURSES IN ACTION

Parkinson’s Specialist Nurses are highly trained and experienced nurses based in communities of need. They are dedicated to supporting local people living with Parkinson’s.

 These Nurses are funded 50/50 by Parkinson’s NSW and the Local Health District in which they are based. This series of articles invites clients to talk about the value of Nurses to their local Parkinson’s community.   


JUDY BROOKS – SUPPORTED BY VINCE CARROLL AND AMANDA BUZIO

Judy is pictured second from the right with her family at the 2018 Unity Walk in the Park virtual event

Judy Brooks was born in Coffs Harbour and has lived there most of her life. When she was diagnosed with Parkinson’s in late 2013, she discovered the local Parkinson’s Support Group, but felt it wasn’t particularly relevant to her at the time.

“I was younger when I was first diagnosed and the majority of members were much older and had very severe Parkinson’s,” explained Judy. “When a Group for younger people was formed a few years later, I joined that.”

Judy met the local Parkinson’s Specialist Nurses, Vince Carroll and Amanda Buzio, through that Group.

Amanda – Parkinson’s Specialist Nurse

“I can’t speak highly enough of Vince and Amanda,” she says. “They’re absolutely wonderful. At any time of day, if I’m feeling a bit low or worried, they are always there to lend an ear and listen to my concerns.

“They help our Support Group in many ways too – including inviting guest speakers for meetings, such as dietitians, speech pathologists, occupational therapists and physiotherapists. Both Vince and Amanda also encourage us to use our collective wisdom and experience to help and support each other.

Vince- Parkinson’s Nurse Specialist

“When I first became aware of the opportunity to join a Support Group, I felt I was managing OK – but then I considered the idea that there might be some way I can help others through joining.

“Initially it was quite a small Group, but it has grown over the years. I have made many special friends and they’ve become like second family to me. I also came to learn that the Group is open not exclusively to Parkinson’s patients but also their caregivers and families.”

Judy was also involved with the 2018 and 2019 Parkinson’s NSW Unity Walk fundraisers in Coffs Harbour.

“I haven’t been as involved with the Support Group as I would like to in 2020,” she said. “I had a fall and needed rehabilitation before I could move back home.

“Amanda and Vince make themselves available for home visits and phone calls to help and encourage me whenever needed.  Both are held in very high regard among the local Parkinson’s community and contribute enormously to the health and wellbeing of all its members.”

Judy in action at her weekly boxing class


Vetting project assures quality of services

Vetting project assures quality of services

Parkinson’s NSW recently concluded an intensive three-month project that involved vetting all of its recommended external service providers – including neurologists, speech pathologists, occupational therapists, physiotherapists, exercise physiologists, and dietitians.

“Parkinson’s NSW is committed to ensuring quality outcomes for all people impacted by Parkinson’s,” said Christine McGee, Parkinson’s NSW Education Coordinator and leader of the vetting project.

“By vetting service providers, we are managing and mitigating risks to anyone interacting with Parkinson’s NSW and the outside service providers we recommend to people.

“This focus on quality and risk management is critical to the Mission of our organisation; that is to enhance the quality of life of people affected by Parkinson’s, while working towards a cure,” she said.

The project commenced in July 2020, and initially consolidated and vetted the separate lists of service providers held by various Parkinson’s NSW staff members.

The organisation’s Quality Team members and Parkinson’s Registered Nurses then further developed the list by recommending experienced providers for the Register.

There are now 127 fully vetted Primary and Allied Health service providers on the Register, with more than 100 others still going through the intensive vetting process.

The process includes gathering documentation to verify service providers’ current professional registration, indemnity insurance, possession of a valid police check, and number of years of experience in working with people who are living with Parkinson’s.

The Register of Vetted Service Providers is now the only list Parkinson’s NSW staff will refer to when connecting people living with Parkinson’s and their caregivers with external services and support.


Never let Parkinson’s deter you!

Never let Parkinson’s deter you!

By Sandra Elms

Sandra abseiling

Covid-19 has restricted our movement and activities, so when the opportunity came to visit the Blue Mountains where one of my sons lives, I quickly took it.

I was only there for a couple of days but as always, they were action-packed days.

The first day we did the walk from Blackheath to the Grand Canyon – quite challenging for someone with Parkinson’s as there are lots of steps down and steps to climb out.

The second day involved going abseiling with my son, his friend and 5 children. After watching the children abseiling down a cliff face, I thought I would attempt it as well – even with Parkinson’s.

Verdict: Quite scary as you walk off the edge of the cliff but elation when you get to the bottom.

Never let Parkinson’s deter you!


World Parkinson’s Congress 2022

World Parkinson’s Congress 2022

The 5th World Parkinson Congress (WPC) was held in Kyoto, Japan, in June 2019.

Now planning is underway for the 6th Parkinson Congress to be held in Barcelona, Spain from June 7 to 10, 2022.

That sounds like a long time away, but it’s not too early to save those dates in your calendar.

Sandra Elms from Newcastle Support Group is one of 15 Ambassadors appointed from around the globe for the WPC 2022.

“Unlike many conferences which discuss Parkinson’s disease, but do not encourage people with Parkinson’s to attend, the WPC is open to everyone. I would strongly encourage you to go,” said Sandra.

Want to register your interest (without incurring cost or making a commitment) to attend WPC 2022 in Barcelona?

Phone Sarah Swarbrick at Parkinson’s NSW on (02) 8051 1900 or email sarah.swarbrick@parkinsonsnsw.org.au


Can Covid-19 increase the risk of developing Parkinson’s?

Can Covid-19 increase the risk of developing Parkinson’s?

Although there isn’t yet sufficient evidence to draw conclusions, it is possible that people who survive Coronavirus (COVID-19) may be at increased risk of Parkinson’s, researchers from Brazil argued in a recent paper.

The paper titled COVID-19 and Parkinson’s Disease: Are We Dealing with Short-term Impacts or Something Worse? was published in the Journal of Parkinson’s Disease.

It is unclear exactly what causes Parkinson’s disease; most likely a combination of genetic and environmental factors contribute to some extent.

One idea put forward is that Parkinson’s could be initiated or modulated by infections. Theoretically, this could either be due to direct effects (e.g., a virus infecting and killing brain cells), or indirect effects (e.g., an infection triggering inflammation in the brain).

This idea is far from proven. Nonetheless, there are some lines of evidence that support the hypothesis.

One idea put forward is that Parkinson’s could be initiated or modulated by infections

For example, research in mice has suggested that infection with some strains of influenza can trigger changes in the brain similar to those seen in Parkinson’s.

Additionally, people born during or around the 1918 influenza pandemic were more than twice as likely to develop Parkinson’s as people born in the decades before or after that pandemic.

Previous research also has shown that some people with Parkinson’s have antibodies against coronaviruses in the fluid around the brain. (This previous research was not examining the virus that causes COVID-19, but was looking at the coronavirus family in general.)

Based on these previous findings, the researchers behind the new paper suggest that COVID-19 infection may increase Parkinson’s risk.

While it is important to note that research into COVID-19 is still in its infancy, there is some emerging evidence specific to COVID-19 that supports this idea.

For example, loss of the sense of smell is a well-known early symptom of Parkinson’s and also has been reported to be a common symptom of COVID-19.

Theoretically, this could suggest the virus is able to infect the parts of the central nervous system that are necessary for processing smell (the olfactory pathway) and, from there, could spread elsewhere in the brain.

Preliminary evidence that people with COVID-19 sometimes have neurological symptoms supports the notion that the virus could get into the brain, as does an early report describing brain inflammation in an individual with COVID-19.

“Although it is obviously too early to know what the long term consequences of COVID-19 will be on the brain, the clinical psychiatry and neurology research communities definitely need to be vigilant in monitoring how those who recover from moderate and severe COVID-19 fare in the future,” said Patrik Brundin, MD, PhD, co-editor-in-chief of the Journal of Parkinson’s Disease. (He was not involved in writing the paper).

This will require strategies for monitoring COVID-19 survivors, even after the pandemic itself has subsided.

Sources

Author: Caithlin Ng

Parkinson’s Life


Living Well with the Right Nutrition

Living Well with the Right Nutrition

Good nutrition is vital for a healthy life, but it is even more important for people living with Parkinson’s.

While there is no one Parkinson’s-specific diet plan, it is important to eat a mix of whole grains, vegetables, fruits, milk and dairy products – as well as protein-rich foods such as meat and beans.

Nuts, olive oil, fish and eggs will also add beneficial fats to your diet.

Mix of whole grains, vegetables, fruits, milk and protein-rich foods such as fish and beans – beneficial for good nutrition

Unplanned weight loss is a particular challenge for people living with Parkinson’s and it can have a variety of causes including:

  • Gradual loss of the sense of smell and taste, making eating less enjoyable.
  • Some medications cause nausea, which suppresses appetite.
  • Motor symptoms like tremor, slowness and stiffness and complications of treatment such as dyskinesia can make eating difficult.
  • Swallowing difficulties can interfere with eating.
  • People who experience depression or apathy may lose their appetite.
  • Some people may be embarrassed by their slow eating, so they stop eating before they have had enough.
  • People taking levodopa may have been advised to avoid taking medications with protein, making it difficult to get adequate nutrition throughout the day.

These issues need to be addressed because it is important to maintain energy with a regular food supply for cell nourishment.

After you eat, your blood glucose level will rise and beta cells in your pancreas will release insulin into your bloodstream. Insulin is like a key; it unlocks muscle, fat, and liver cells so glucose can get inside them.

Most of the cells in your body use glucose along with amino acids (the building blocks of protein) and fats for energy. However, it is also the main source of fuel for your brain – a critical consideration for people living with Parkinson’s.

Your body can only store enough fuel for about a day, so regular meals are important.

Fluid intake is very important.

Other tips for eating with Parkinson’s:

  • Eat smaller portions/meals more frequently
  • Serve bite size portions for easier management
  • Sit upright with good posture
  • Place only a small amount of food on your eating utensils for each bite
  • Concentrate on the task of eating
  • Modify the foods and fluids if necessary, to ensure ingestion if you have swallowing issues
  • Reheat food if it gets cold due to slowness of eating
  • Use an insulated dish with small servings to ensure that your meal remains warm and palatable
  • Use assistive utensils if necessary

Also be aware that Levodopa and protein are in competition to get into the blood stream – so it’s best to take this medication at least 30 minutes prior to a meal. You don’t need to avoid protein as some might think.

Fluid and fibre intake are also important for people living with Parkinson’s. The combination of water and fibre keeps your bowel moving. 

Try filling a jug with 1.5 to 2 litres of water each morning, and make sure you drink that volume throughout the day to ensure adequate fluid intake.

Ingesting an adequate amount of fluids each day also helps to prevent urinary tract infections. However, be careful with beverages like tea and coffee. They have a diuretic effect and that can diminish the volume of fluids you retain.

Finally, don’t forget the benefits of sunlight and exercise combined with good nutrition.

Call the Parkinson’s NSW InfoLine for evidence-based information: 1800 644 189


Re-imagining Parkinson’s Care

Re-imagining Parkinson’s Care

“Chronic neurological diseases are the leading source of disability globally. Yet, our healthcare systems are not designed to meet the needs of the many chronic neurological patients,” say Dr Bastiaan Bloem and Dr Sirwan Darweesh.

The two researchers work at Radboud University’s Nijmegen Medical Centre in the Netherlands are part of a team that recently outlined a new patient-centred care model that aims to tackle this problem.

Parkinson's nurse taking care of patients

Re-imagining Parkinson’s care

“Care is fragmented with poor interdisciplinary collaboration and a lack of timely access to services and therapies,” explain Dr Bloem and Dr Darweesh, reflecting on what motivated the report.

“Furthermore, care is typically reactive. Treatment plans tend to focus on the condition rather than the individual living with it and patients are insufficiently involved in clinical decision making.”

The team created a model based around eight solutions that offer an integrated approach to treating Parkinson’s, connecting different aspects of healthcare into a network.

These solutions include delivering care either in or close to the patient’s home where possible, supporting patient education and self-management, taking a proactive approach to healthcare, and using methods like sensors and e-diaries to monitor symptoms and identify problems quickly.

The report encourages a more tailored approach that considers individual patient needs, improved access to doctors and specialists, and having a single point of access (such as a personal care manager) available to people with Parkinson’s.

The personal care manager can answer basic questions, support referrals and coordinate advice across different healthcare disciplines.

According to Dr Bloem and Dr Darweesh, the new model could revolutionise existing approaches to treating chronic neurological conditions like Parkinson’s.

The model creates an integrated set of actions that aim to reduce unnecessary disability for patients, improve quality of life of affected persons and their families and save costs for society ­– helping to keep healthcare affordable for future generations.

Although the full integrated care model may not be easy to implement world-wide, there are opportunities to integrate important elements of it – such as telemedicine using videoconferencing – into healthcare systems in developing countries.

Sources

Saskia Mair

Parkinson’s Life

The Lancet Neurology


Understanding the five stages of Parkinson’s

Understanding the five stages of Parkinson’s

By Roisin McCormack

Though progression can be expected to be different for each individual, Parkinson’s does follow a broad pattern and can be divided into five typical stages – known as the Hoehn and Yahr Scale, which is used by physicians across the world.

Source: Claesson, Ingrid. (2018). Better Balance with Somatosensory Exercises-a Parkinson Perspective.


Stage one:

The earliest stage of Parkinson’s, the person experiences “a mild tremor and motor symptoms which typically appear on just one side of the body”.

Changes in walking, facial expression and posture may be noticed but will not impact day-to-day life. Symptoms may be so mild that it can be hard to diagnose the condition.


Stage two:

The progression from stage one to stage two can take months or even years. Symptoms will begin to get worse, with “tremor, rigidity and other movement symptoms now starting to affect both sides of the body”.

It is still possible to live alone, but daily tasks become more difficult and take longer to complete and changes in speech – such as a softer voice or slurring – begin to occur.


Stage three:

The key characteristics of this mid-stage include “a loss of balance and slowness of movements accompanied by an increased incidence of falling”, as well as the symptoms experienced in stage two.

While the person is still fully independent, symptoms begin to slightly hinder activities such as dressing and eating.


Stage four:

The defining change in this stage is that a person will need help with daily activities as “symptoms become more severe and limiting”. It’s possible to stand without assistance, but movement may require an assistive device such as a walker.

Many people have to reconsider their living options at this stage of Parkinson’s disease, as it becomes harder to live alone.


Stage five:

This is the most advanced and debilitating of the Parkinson’s disease stages where “stiffness in the legs make it very difficult or impossible to walk”.

A person will need constant care and may be bound to a wheelchair and in a lot of cases, non-motor symptoms “can also appear in the form of depression, anxiety, hallucinations and delusions”.

Parkinson’s disease late-stage complications

During the most advanced stage of Parkinson’s – typically between stages four and five – a person’s symptoms and medication regime become more complex.

Supporting care becomes especially important in advanced Parkinson’s, with an estimated 50 to 80 percent of people eventually experiencing dementia and an increased number of falls.


Sources:
Dr Simon Stott, Deputy Director of Research, The Cure Parkinson’s Trust
Parkinson’s Life


My DBS Journey – Parry

My DBS Journey

Parry, aged 80.
Had DBS surgery in July 2014.

I was diagnosed with Parkinson’s in 2009.

My Parkinson’s was becoming a social embarrassment. I had a fairly mild tremor, but people would want to know what was wrong. Some people would look at me as though I was crazy.

My specialist told me about DBS surgery as a possibility and suggested I consider having it done.

Although it was a long operation, I decided to go ahead to hopefully get rid of the tremor which was causing me embarrassment.

It took four months from the discussion in March 2014 through assessment to being in the operating theatre with a huge team of specialists.

Just 24 hours after surgery my specialist came in and said that the DBS was working. He had set it for 1.5 volts and there has been no trace of a tremor ever since.

My specialist told me he would teach me how to adjust the stimulator, but I said ‘what’s the point of adjusting it? I know nothing about the parameters’.

He gave me night-time and daytime settings and showed me how to turn it on and off. I just need to switch between the settings.

I chose to have a battery implanted rather than spend hours at a time recharging regularly. The first battery lasted three years before it needed to be replaced, but the second one only lasted two years. The third battery now has a greater capacity, so it shouldn’t need replacing for a while.

I’m very happy with the surgery – people are stunned by how well it’s worked. It was as though someone had waved a magic wand over me. I’m thrilled with the outcome.

If anyone is considering DBS they should definitely have it done if they qualify, and can afford it.

It’s a very expensive surgery, even with top-tier health cover. But apparently some operations are done for free for some patients. I’ve met one of these lucky ones and his surgery was very successful.

It’s all upside; there’s no downside.


My [Parkinson’s] Life – Geoff Grundy

My [Parkinson’s] Life

Having Parkinson’s is just one aspect of a person’s life story. We want to share more stories of the varied lives of people currently living with Parkinson’s.

Credit: freepik.com. Man surfing at the beach.

 

 

 

 

 

 

 

 

 

Geoff Grundy

Growing up on the Collaroy Plateau, on Sydney’s Northern Beaches, young Geoff Grundy was a keen surfer. The second of six children, Geoff went to school at Narrabeen, surfed with his mates and lived the outdoor lifestyle growing up.

His love of surfing stayed with him until he discovered he had problems with balance and leg cramps in his early 60s.

“By the time I was 20 I headed off to go fruit picking and work in the Victorian snow fields and travel around,” says Geoff, who worked in various farms in NSW and Victoria for a couple of years. While working in these regional areas, he found opportunities in constructing commercial greenhouses and learned the building skills for a new career.

“That work took me up to Kempsey,” says Geoff, who also met his first wife at that time. “I ended up living at Crescent Head, near Kempsey and getting married and having two children.”

Unfortunately, that marriage didn’t work out and they divorced, which lead Geoff to move to the Central Coast for a new start.

“By this time, I was getting older,” says Geoff. “I wasn’t handling the physical labour of building work as well as I used to. I knew I couldn’t do it for the rest of my life. My body was giving out.”

Geoff decided to do a course in working as a support person for people with mental illness and began working in residential care. Around this time Geoff reconnected with his first girlfriend from Collaroy, who had now also split with her husband.

“Sue also had two children,” he says. “We got together again and then a couple of years later my ex-wife died. We ended up bringing up four children between the two of us. They’ve all grown up and are doing their own things now.”

While the children were growing up Geoff moved on to a new job. “I began working as a bus driver doing tours to wineries,” he recalls. “By now I was really semi-retired.”

It was while driving buses that Geoff, then 63, first noticed odd symptoms that eventually made him consult a doctor.

“I had developed shaky hands,” he says. “My fingers were moving all the time. My wife would say that I was tapping her on the shoulder all night long! I was getting leg cramps. And when I would go surfing, I was having difficulties with balance and being able to stand up. I just wasn’t right.”

Geoff visited Professor Heard at Gosford Hospital, and was sent off for scans.

“The diagnosis of Parkinson’s came as a shock,” he says. “It took me a little while to accept. My family were good; they treated it like it’s not a disaster, it’s OK.

“It actually took me about 12 months to really come to terms with it and decide I could live with it. By now I no longer had my passenger bus license, so couldn’t drive buses and was fully retired.

“We had a big five-bedroom house with a flat downstairs. All the children had left home. With just my wife and I living there I was now struggling to keep up the maintenance of it.”

Geoff and Suanna decided to sell up and move into a retirement village on the Central Coast.

“We’ve been there five years now,” says Geoff. “Of course, there are good sides and bad sides to being in a retirement village. It can be a small community, but we’ve settled in and adapted.”

Geoff’s next challenge was to find something to do with all the time he now had on his hands.

“I thought back to the things I liked to do when I was younger and one of those was to play music,” he says. “I’d always played guitars, but I just hadn’t had time to do much of it. Now I really have the time.

“There was a ukulele group at the retirement village, and I joined that. It got me back into playing music. When the teacher for that group left, I ended up becoming the teacher.”

Through Parkinson’s NSW, Geoff was put in contact with another musician, Martin Prior, and they began exchanging recordings of music and songs they played and liked.

Geoff also discovered a guitar-making school in Erina and signed up to do a course. The first one he made was a twelve-string guitar.

“After that I built a couple of little guitars for our three grandchildren,” he says. “I have two grandchildren in Coffs Harbour; twin girls aged three. My wife also has a granddaughter nearby and we see a fair bit of her. I no longer drive, but I jump on trains to see my grandchildren.”

When Geoff found a man who plays saxophone also living in the village, they began teaming up to play together.

“During this COVID-19 isolation time I have been loading my music gear into the boot of the car and taking it around our village to play for Street Music Tuesday or Friday/Sunday Driveway Happy Hour,” says Geoff.

Making the most of what he can do is one of Geoff’s techniques for living with Parkinson’s.

“I can’t go surfing but I go to the beach for a swim and we have walks along the beach,” he says. “And when I’m playing the guitar or making something, and using all my concentration, I don’t shake.

“It’s strange but if you are really concentrating you can sing or play music or make something without shaking. And if there are times when I can’t do something I normally can, I just have to leave it and try again later.”

Geoff also uses meditation and Tai Chi to stay relaxed and calm.

“I learned TM (transcendental meditation) when I was a young hippie in my late teens and I practice that,” he explains.

“Parkinson’s is something you can learn to live with. But first you have to accept that you’ve got it and then find ways to deal with the depression that comes with it.

“Otherwise you can have days that you don’t want to get out of bed. You have to find things that you can do, that you really want to do.”


Newly Diagnosed Pack now available faster online

Newly Diagnosed Pack now available faster online

Newly Diagnosed with Parkinson's

Newly diagnosed with Parkinson’s? Need information asap? Parkinson’s NSW can help with that.

Now that Australia Post deliveries are less frequent – and even unreliable in some areas – we have developed an online version of our InfoLine Newly Diagnosed Pack.

If you, a friend, or family member has an email address, we can now send a Pack to you within minutes and you won’t have to wait to access vital information.

If you need a Newly Diagnosed Pack of information to help you through this stressful time, call the Parkinson’s NSW InfoLine: 1800 644 189 and speak to one of our Parkinson’s Registered Nurses.


3D Software to improve success of DBS surgery

3D Software to improve the success of DBS surgery

Deep brain stimulation involves surgically placing electrodes deep into the brains of people with Parkinson’s to relieve the stiffness, tremors, and rigidity the disease causes.

Deep Brain Stimulation DBS and Parkinson's

For many people, the treatment has immediate and life-changing results. However, regardless of the skills of the neurosurgeon, the procedure is not always successful. It depends on the precise placement of electrodes in the brain into target areas that are extremely small – within one millimetre.

Greydon Gilmore, a PhD student in Biomedical Engineering at Western University in Canada, is creating software to improve the placement of the DBS electrodes.

His 3D software combines with Magnetic Resonance Imaging (MRI) and other brain scans to help surgeons plan their surgery by mapping the brain to find the optimal point to place electrodes.

Gilmore works in the operating theatre with surgeons using his new software to detect the characteristic firing patterns of the region of the brain where the team wants to place the electrodes.

The surgeons are given real-time feedback about when they are (or are not) placing electrodes into the nucleus of the brain cells they are targeting.

After surgery, patients will receive a Computed Tomography (CT) scan which works with the 3D software to show the surgical team whether the electrodes are in the right place.

If the electrodes are not within 1 millimetre of where they should be, Gilmore hopes the surgeons will be able to re-implant them. Currently, 20 to 30 percent of the patients in the clinic where Gilmore works don’t get a full response to the DBS treatment.

Reimplantation should deliver better symptom control for more people, he says. The new software will also help technicians fine-tune the amount and frequency of the current their ‘pacemakers for the brain’ deliver.

Sources:

  • Western University
  • eParkinsonPost
  • Parkinson Canada
  • Parkinson Canada National Research Program
  • Research funded in partnership with The Lanka Charitable Foundation
  • Healthdirect Australia

What’s the link between tulips and Parkinson’s?

What’s the link between tulips and Parkinson’s?

It’s spring and flowers are bursting into bloom all around – including tulips.

Dr James Parkinson's Tulip

In 2005 the tulip was adopted as the official symbol of Parkinson’s at the 9th World Parkinson’s Disease Day Conference in Luxembourg. However, the flower had been informally associated with the disease for more than 20 years prior to that.

Back in 1980, a Dutch horticulturalist named J.W.S. Van der Wereld – who was living with Parkinson’s – developed a new red and white variant of the tulip.

He named his newly cultivated flower the Dr James Parkinson tulip in honour of the medico who first documented the features of Parkinson’s disease in his 1817 publication An Essay on the Shaking Palsy.

The Dr James Parkinson tulip is officially described as  the “..exterior being a glowing cardinal red, small feathered white edge, the outer base whitish; the inside, a currant-red to a turkey-red, broad feathered white edge, anthers pale yellow.”

Today wearing the red tulip raises awareness and shows support for people living with Parkinson’s and their families globally.


April Falls

Loss of balance and falling are common problems for people living with Parkinson’s.
These problems develop over time as the condition progresses. Falls carry a significant risk of physical injury and hospitalisation.

This information sheet identifies hazards to help reduce your risk of falling and tips on preventing falls.

Preventing Falls Information Sheet

Other tips and information for living well can be found here


Simon Lewis Parkinson’s Talk with Sydney Inner West Rotary

You are invited to join Sydney Inner West Rotary on Monday 10th April at  6:00pm for a 6.30pm start.

MEET Professor Simon Lewis, Professor of Cognitive Neuroscience, University Sydney and Royal Prince Alfred Hospital. HEAR about the Latest Research on the Brain, Cognition and Movement. Darbar Restaurant, 134 Glebe Point Road, Glebe.

Latest Research on the Brain, Cognition and Movement.   Keynote Speaker, Prof Simon Lewis (MBBCh BSc MRCP FRACP MD, Associate Professor Brain & Mind Research Institute, Sydney).

Professor Simon Lewis is an NHMRC-ARC Dementia Fellow who works as a Consultant Neurologist at the Royal Prince Alfred Hospital and is Professor of Cognitive Neuroscience at the University of Sydney. He is also the Director of the Parkinson’s Disease Research Clinic at the Brain & Mind Research Institute and heads the NSW Movement Disorders Brain Donor program. He has published over 100 peer review papers, 2 books and 2 book chapters and has attracted funding from the NHMRC, ARC and Michael J Fox Foundation to support his research interests targeting quality of life in PD. In addition to this research, he has sat on the Board of Parkinson’s NSW. He recently led the nationwide ‘DASH to the InfoLine’ campaign aiming to raise awareness and reduce stigma in Parkinson’s, he has also headed the first trial to evaluate community based Parkinson’s nurse specialists in Australia.

COST:   $30 Dinner –  a glass of wine on arrival.

RSVP : by the 7th April 

For further information and to RSVP call or text:   0418 602014 


Psychological treatment of anxiety and depression in patients with Parkinson’s disease: A pilot study

Macquarie University are looking for participants for a pilot study.
If you are interested please call (02) 9850 8034 or email Viviana.Wuthrich@mq.edu.au further information below.

RECRUITMENT for Macquarie Univeristy:

We seek patients with Parkinson’s disease, over the age of 50 years, who are experiencing symptoms of low mood and anxiety (or worry) to participate. If you are interested in participating, please call (02) 9850 8034 or email Viviana.Wuthrich@mq.edu.au for more information on the study. 

Depression and anxiety are very common conditions in Parkinson’s disease. We are seeking individuals aged over 50 years with Parkinson’s disease who suffer from anxiety and/or depression to participate in a treatment trial. We are comparing the benefits of a psychological program conducted over the telephone to treatment as usual. This project is supported by a seeding grant from Parkinson’s NSW to Associate Professor Viviana Wuthrich and Distinguished Professor Ron Rapee, in the Centre for Emotional Health, Department of Psychology, Macquarie University. If you are interested in participating, or want to find out more information please call (02) 9850 8034 or email Viviana.Wuthrich@mq.edu.au

 

Investigators: Associate Professor Viviana Wuthrich & Distinguished Professor Ron Rapee

Affiliation: Centre for Emotional Health, Department of Psychology, Macquarie University.

Depression and anxiety is experienced in up to 50% of patients with Parkinson’s disease and is associated with poorer quality of life, poorer functioning and greater physical and cognitive decline. Depression in the patient is also strongly associated with caregiver or spouse distress. Therefore effectively treating anxiety and depression in people with Parkinson’s disease will have a major impact on burden of the disease for both the patient and their carer. Despite this, very few studies have examined the effectiveness of psychological interventions for treating anxiety and depression in patients with Parkinson’s disease, and when they have they have focused on either treating anxiety or depression, but not both together. Depression and anxiety frequently co-occur and when they do are associated with worse outcomes. So therefore there is a great need to develop psychological programs that treat both depression and anxiety. In addition, the value of including carers in treatment programs has not been well evaluated. Given that carers can play a critical role in assisting the patient to manage their symptoms and to manage cognitive difficulties that can be associated with the disease, and given the high rates of burden on carers, it is critical to develop a program to treat anxiety and depression in patients with Parkinson’s disease that also includes carer participation.

We have previously developed and demonstrated in two large randomised controlled trials the efficacy of a Cognitive Behavioural Therapy (CBT) intervention for treating co-occurring anxiety and depressive symptoms in older adults without Parkinson’s disease. In two trials, this program led to significant reductions in both anxiety and depressive symptoms with large effects that were maintained for 6 months post-treatment. In a novel approach we plan to modify our successful program to target anxiety and depression in patients with Parkinson’s disease. The program will be modified to address the specific needs of patients with Parkinson’s disease. It will also be adapted to create a role for the carer in the program so that they will participate and learn the skills taught to the patient and can assist the patient with the skills if needed. Improvements in both patient and carer distress will be compared between the two interventions.


Can ultrasound detect early stage Parkinson’s disease?

 

Assoc. Prof. Kay Double leads the Neurodegeneration Research Group at the Brain & Mind Centre at the University of Sydney, with a key interest in Parkinson’s disease. Currently, diagnosis of Parkinson’s disease is based on observation of movement problems in the patient and there are no objective diagnostic tests available, such as a brain scan or blood test, to assist clinicians make a diagnosis. As a result, diagnosis can be delayed and incorrect diagnoses are not uncommon.

A major area of interest of Assoc. Prof. Kay Double’s research group is the use of ultrasound to visualize the brain to detect Parkinson’s disease. Ultrasound imaging has advantages over other available forms of brain imaging, such as magnetic resonance imaging (MRI), in that it is fast, safe, inexpensive and widely available. Assoc Prof Double’s team believe it might be able to detect Parkinson’s disease in the very early stages of the disease, even before movement problems develop. Early diagnosis of Parkinson’s disease will ensure patients receive the best treatment as early as possible, with the hope that future treatments will be able to slow the progression of the disease.

Assoc Prof’s team are currently looking for individuals aged between 50 and 70 years old to assist them with this research.  They are recruiting Parkinson’s disease patients within this age range, but also individuals without Parkinson’s disease in the same age range as a comparison group.  The study involves brain scans using ultrasound and MRI and assessments of movement, thinking and memory.

If you are a healthy older person aged between 50 and 70 years of age, or have been diagnosed with Parkinson’s disease and are aged from 50 to 70 years old, and would like to assist with this research, please contact Assoc Prof Double (Email: kay.double@sydney.edu.au) or Karl Aoun (Email: kaou6412@uni.sydney.edu.au; Mob: 04 522 666 72) for further details.


Parkinson’s NSW member awarded Australia Day honour

8th February, 2017

Media release

For immediate release

Parkinson’s NSW member awarded Australia Day honour

 

Parkinson’s NSW are delighted to announce that long standing member and person with Parkinson’s, Mr. Adrian Unger has been awarded the Medal of The Order of Australia (OAM) for services to people with Parkinson’s disease.

Mr. Unger is the founder of Punchin’ Parko’s, an exercise class that uses non-contact boxing techniques in a fun and interesting atmosphere for both people with Parkinson’s and carers. The class aims to reduce the symptoms of Parkinson’s by increasing the neuroplasticity of the brain.

Jo-Anne Reeves, CEO of Parkinson’s NSW said “on behalf of Parkinson’s NSW, I congratulate Adrian Unger on his OAM and thank him for his efforts to support those living with Parkinson’s through Punchin’ Parko’s.”

In Australia, every hour of every day someone is diagnosed with Parkinson’s.  There are 80,000 people with Parkinson’s in Australia across all age groups. Whilst the majority of people affected are over 60 at the time of diagnosis, 20% are of working age and 10% are under the age of 40. There is no known cause or cure.

To enquire about Punchin’ Parko’s classes, please contact our InfoLine on 1800 644 189.

Media enquiries:
Clare Audet
Parkinson’s NSW
0431 200 435

Full release here Parkinson’sNSWmediarelease080217

 

 


New research uncovers potential to delay Parkinson’s disease progression

 

25th January, 2017

Media release

Embargoed until 6am, 26th January 2017 (AEDT)

 

New research uncovers potential to delay Parkinson’s disease progression

Research published today in international scientific journal PLOS ONE has revealed that the activin A molecule may hold the answer to slowing the progression of Parkinson’s disease.

The research project was funded by a Parkinson’s NSW seed grant and was led by researchers Dr Sandy Stayte and Professor Bryce Vissel from UTS in collaboration with Dr Kong Li from the University of Sydney.

Using an MPTP mouse model of Parkinson’s disease, the researchers found that when mice received an infusion of activin A directly into the brain, they had much higher numbers of surviving cells in the region of the brain that is damaged in Parkinson’s.

The findings of the research show the first evidence that the ability of activin A to increase survival of dopamine cells may be due to its anti-inflammatory effects.  This research gives people with Parkinson’s hope that new treatments may eventually be created to delay Parkinson’s disease progression.

Jo-Anne Reeves, CEO of Parkinson’s NSW said “Parkinson’s NSW are committed to supporting local researchers find new treatments and ultimately a cure for this devastating disease through our annual seed grant program.  We congratulate Professor Vissel and Dr Stayte on their contribution to advancing Parkinson’s research.”

In Australia, every hour of every day someone is diagnosed with Parkinson’s.  There are 80,000 people with Parkinson’s in Australia across all age groups. Whilst the majority of people affected are over 60 at the time of diagnosis, 20% are of working age and 10% are under the age of 40. There is no known cause or cure.

Media enquiries:
Clare Audet
Parkinson’s NSW
0431 200 435

 

 

 


Punchin’ Parkos on 7:30

Punchin’ Parkos was on the 7:30 report on Wednesday 3rd June.

Click the link below to view the report and read the article:

Punchin’ Parkos on 7:30


Exercise For Your Life

There is growing evidence that exercise slows progression and improves some symptoms for people suffering from Parkinson’s disease.

Parkinson’s disease is a progressive, degenerative neurological condition, which reveals itself differently in each individual. The development of Parkinson’s challenges those diagnosed to remain active while the condition restricts their motor-neuron control, leading to the gradual degradation of physical control and ability. Some of the common symptoms of Parkinson’s include tremors, muscle rigidity and freezing, slowed movement and lethargy.

Exercise might feel like the last thing those with Parkinson’s want to do but there is increasing recognition that regular, intense exercise is crucial and can provide immense benefits in all stages of the diseases’ progression. A 2014 study supported by the Australian National Health and Medical Research Council found that exercise improved balance, mobility, fear of falling and quality of life in a controlled trial of patients with Parkinson’s (Brooks, 2014).

The Challenges of Parkinson’s

Parkinson’s is not just an old person’s disease, and challenges all those who are diagnosed to live the best life they can with the limits imposed by the disease. It is a debilitating condition affecting balance, flexibility, co-ordination, gait, fatigue levels and leads to feelings of social isolation and depression. Stress and tension only exacerbate symptoms.

The right medication and support after diagnosis can make all the difference to quality of life and one of the most difficult yet vital recommendations is to keep active (Schlender, 2015). There are many benefits to regular exercise, even for people without the condition, and such advantages are even more important for those with Parkinson’s.

The Benefits of Exercise

An excellent advantage of physical activity for those with Parkinson’s is the opportunity to meet others who are dealing with similar issues, realising that you are not alone and interacting with like-minded individuals, positively influencing mental state.

Regular exercise can improve the symptoms of Parkinson’s and it has a positive effect on quality of life, these benefits include (Better Health Channel, 2012):

  • Greater muscle strength and flexibility
  • Increased cardiovascular fitness
  • Improved coordination and balance
  • Improved posture
  • Reduced muscle cramping
  • Greater confidence in performing daily tasks
  • Reduced stress levels
  • Improved joint mobility
  • Combating depression

Exercise Recommendations

Consistency and intensity are important to see the benefits from exercise on Parkinson’s symptoms. Some general recommendations include:

  • Aim for at least 15 minutes a day
  • Thoroughly stretch, warm up and cool down
  • Start with the easiest exercises, working up as fitness increases
  • Try to perform each movement to best of ability
  • If you feel tired, stop and rest
  • Stop any exercise that causes pain
  • Try to make exercising fun!

Exercise takes many forms, from Yoga to Dancing, even Boxing, you can choose to do what you enjoy. Consult your physician for specific recommendations on exercising and look for Parkinson’s specific fitness groups in your local area or contact Parkinson’s NSW on our free InfoLine 1800 644 189.

Parkinson’s NSW is the only organisation in NSW providing free support services including a free InfoLine which is staffed by health professionals, counselling and support groups to people living with Parkinson’s, their families and carers.

References

Better Health Channel. (2012). Parkinson’s Disease. Retrieved from Better Health Channel: http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Parkinson’s_disease_explained

Brooks, M. (2014). Exercise Has Benefits in Parkinson’s Disease. Retrieved May 13, 2015, from Medscape: http://www.medscape.com/viewarticle/838128

Petzinger, G. M. (2009). Does Exercise Impact Parkinson’s? Retrieved from Parkinson’s Disease Foundation: http://www.pdf.org/en/parkinson_exercise_impact

Schlender, S. (2015, January). Exercise: New Prescription for Parkinsons Disease. Retrieved from Voice of America: http://www.voanews.com/content/exercise-new-prescription-for-parkinsons-disease/2616831.html

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