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The novel GDNF trial yields mixed results

The novel GDNF clinical trial offered hope for restoring brain cells in people with Parkinson’s Disease. Including 41 people with Parkinson’s Disease aged between 41 and 72, the clinical trial was designed to investigate whether GDNF could slow, stop or reverse Parkinson’s Disease. Results were recently published. Read our study summary here.

Neurotrophic factors are small proteins produced in the brain that support the growth, survival and differentiation of brain cells. These proteins are important for maintenance of brain health and consequently there has been considerable interest in whether these proteins might improve survival or indeed assist regeneration of brain cells that are affected by Parkinson’s disease. 

From 2012 to 2017, UK researchers conducted a novel clinical trial looking at the effects of delivering one such Neurotrophic factor, Glial Derived Neurotrophic Factor (GDNF) directly to the brain, using a new type of surgically implanted device. Link to article here https://www.parkinsonsmovement.com/the-gdnf-trial/ 

Including 41 people with Parkinson’s Disease aged between 41 and 72, the clinical trial was designed to investigate whether GDNF could slow, stop or reverse Parkinson’s Disease. 

The group, all of whom had been diagnosed around eight years ago, were split into two smaller groups who were allocated either a placebo or the GDNF treatment. 

Using a device mounted on the skull, the researchers were able to directly infuse GDNF into the putamen – an important brain region that is affected by PD. Study participants received either placebo or GDNF treatment every four weeks for 40 weeks. 

After the 40-week period, the researchers noted that there was “no overall difference between the GDNF and placebo group” in terms of their movement scores. However, nine people showed what researchers called a “clinically significant improvement”. 

The researchers then conducted an extension study for an additional 40 weeks and again found no clear difference between patients who had received GDNF versus placebo. 

Overall, neither the GDNF study nor the extension study helped to improve movement-related symptoms in people with Parkinson’s, ultimately leading to the conclusion that GDNF infusions at the dose and for the duration used did not improve Parkinson’s disease. 

Despite these disappointing results, the study demonstrated that direct monthly brain infusions of substances that might treat Parkinson’s disease is feasible and tolerable, thus providing an important platform for future trials into possible therapies for Parkinsons’s disease. 

A documentary regarding this trial has been produced by the BBC: https://www.bbc.com/news/av/stories-47483307/the-radical-drug-trial-hoping-for-a-miracle-parkinson-s-cure

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Video documents NSPH’s 500th DBS surgery milestone

Neurosurgeon Dr Raymond Cook, Neurologist Dr Paul Silberstein and the Sydney DBS team recently completed their 500th Deep Brain Stimulation (DBS) surgery and this milestone has been documented in a video produced by North Shore Private Hospital.

The Sydney DBS team, who have worked together for 14 years at North Shore Private Hospital, have been a key group in the renaissance of Parkinson’s disease and Movement Disorder surgery in Australia, and continue as the most experienced DBS team in NSW. 

DBS involves the placement of stimulating electrodes in specific deep brain targets by a neurosurgical team. These wires are routed under the skin to an implanted battery, placed in the chest or abdominal wall. The battery produces a continuous impulse to the brain and provides 24 hour therapy to alleviate symptoms. 

In Parkinson’s disease, DBS improves consistency of symptom control when this cannot be achieved with medication, reduces excessive movement (dyskinesia), facilitates a reduction in drug therapy and improves quality of life. DBS is also effective in substantially reducing symptoms in a number of other medication refractory Movement Disorders including Tremor syndromes, Dystonia and Tic disorders. 

Successful therapy requires high surgical accuracy. The Sydney DBS team uses state of the art surgical equipment, carefully selected and sourced from international suppliers, and takes pride in surgical precision, high efficacy and a low complication rate. Excellent post-operative care is provided in the North Shore Private Intensive Care Unit and Neurosurgery ward.

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Apathy and Parkinson’s disease

Apathy, a lack of feeling, enthusiasm, or concern, can affect as many as 40% of people with Parkinson’s Disease. And, according to Shake it Up Australia Foundation (https://shakeitup.org.au/apathy-and-parkinsons-disease/), apathy can have a detrimental effect on a person’s treatment outcomes, progress and mental health. 

While more prevalent in older people and those with severe symptoms, apathy can occur in anyone living with Parkinson’s disease at any time. 

Friends and family may be the first to notice if someone with PD is feeling apathetic. Common signs to look for include a lack of interest or concern about life, people and the world, as well as a loss of ‘get up and go.’ Activities a person once enjoyed may now seem too difficult. 

If your loved one is showing signs of apathy, visit your doctor. Apathy can be confused with other mental health conditions, such as anxiety or depression, and a correct diagnosis is important in obtaining optimal treatment. 

The good news is that there are many strategies to help people with PD who are experiencing apathy. Your doctor can help create a dedicated treatment program incorporating healthy lifestyle changes such as sleep, diet and exercise. Cognitive exercises and social activities can also help reduce feelings of apathy. Establishing a routine, and setting clear goals, can help people suffering from apathy stay on track and motivated. 

While there is limited evidence supporting medications to treat apathy in people with PD, research in this area is ongoing. Certain medications can help people on an individual level. If you’re concerned that a loved one with Parkinson’s Disease may be experiencing apathy, visit your doctor.

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 May 2019.

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World Parkinson’s Day Fundraiser at NSPH


Thank you staff and visitors to North Shore Private Hospital for supporting Shake it Up Australia Foundation for Parkinson’s Research on World Parkinson’s Day. 100 beautifully decorated cupcakes on our cupcake stall sold out in no time!

All monies raised at the yearly April 11 World Parkinson’s Day fundraiser go to Shake it Up Australia Foundation to support the amazing work they do for Parkinson’s research.

For more information on Shake it Up, head to www.shakeitup.org or follow them on Facebook at https://www.facebook.com/shakeitupaust/https://www.facebook.com/shakeitupaust/

The Sydney DBS surgical team
North Shore Private Hospital Nurse Unit Managers, Karen Morrison and Morena Hill from our Neurological ward with NSPH CEO, Richard Ryan

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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.

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Travelling with Parkinson’s Disease

If you’ve been diagnosed with Parkinson’s Disease, you might be wondering about whether it’s safe to continue travelling – both at home, and overseas.

The good news is that most people living with Parkinson’s disease continue to be able to travel for many years after the diagnosis. Parkinson’s disease might mean you need to plan your trip in more detail than you have previously.

Here are some tips that you may find helpful for planning your vacations and staying safe while you travel.

Plan ahead

Before you book a holiday or short trip, you may wish to talk to your GP or specialist about your condition and ask if there is anything specific you need to keep in mind.

  • Consider asking your doctor to write a letter about your condition in case you need to visit a doctor while you’re travelling.
  • You may wish to arrange to have this letter translated into local languages if you’re travelling to countries where English is not spoken.
  • Learning how to translate Parkinson’s Disease can also be a helpful step to take before you travel.
  • Consider obtaining a written list of your medications from your doctor or pharmacist.
  • You might also want to investigate how to access medical services particularly if you are travelling to more remote or non-English speaking destinations.

Book in advance

Booking your accommodation and transport in advance can make travelling less stressful. If you are using a travel agent, you might want to ask about special assistance for people with Parkinson’s disease.

If you are flying to your destination, it’s worth thinking about whether it would be best for you to fly without a stopover, or if you would find it easier to break up your trip.

Some other points to keep in mind when you’re booking your hotel and flights include:

  • Location of hotel rooms – some people with Parkinson’s disease prefer to request ground floor rooms or rooms close to the lifts.
  • Rooms with extra space – wheelchair accessible rooms often provide more space, particularly in the bathroom.
  • Travelling to and from airports – plan your transport to and from the airport.
  • Travelling within airports or shipping terminals – using a wheelchair to travel through security, customs and immigration can reduce fatigue. Many airports provide ground staff that are able to assist with this.
  • Driving – if you are able to drive, check any restrictions in local areas.

Get travel insurance

Travel insurance is important for all travellers, but it can be especially important for travellers with special needs.

Consider talking to your insurer about your Parkinson’s disease, and enquire if there are any restrictions on your insurance cover. The extent of cover can vary widely between insurers, and you may find it useful to shop around for a policy that best covers your circumstances. Confirming your plan covers you for Parkinson’s disease internationally as well as locally can give you peace of mind before you travel, and can be very important in the event of an accident or illness while you are away.

Research your itinerary

If you’re driving, find out about car parking and how close this is to the transport terminal. Sketching out a rough itinerary can be helpful in thinking out if there is anything that might make it difficult for you to get around. If you’re driving, find out about car parking and how close this is to the transport terminal.

Medication planning

Talk to your doctor about how to take your medications while you’re travelling, particularly across time zones and consider finding out how to access medication overseas if necessary – including any restrictions you need to be aware of. A back up supply of medication is always a good idea.

For aircraft travel, you may wish to consider separating your two sets of medication between your carry-on bag and stowed luggage.

Further information about travelling with medication can be found on the Department of Foreign Affairs and Trade website https://smartraveller.gov.au/guide/all-travellers/health/Pages/medicine.aspx

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 January 2019.