Neil is an Emeritus Professor at the University of Newcastle whose wife, Sue, was diagnosed with Parkinson’s disease in 1997. After Neil’s retirement they both became active in Parkinson’s Queensland Inc. (PQI), a charity dedicated to improving the lives of those living with Parkinson’s disease. He is now an Ambassador for PQI and with Sue leads the Deep Brain Stimulation Support Group of PQI.

Why join a support group?

Support groups have much to offer if you have a disability or illness. There are many available that target specific health problems, offering information, education and fellowship. Support groups are an invaluable source of information, as well as that provided by clinicians – after all support group members actually live with the condition 24/7. They also include not only those with the disability but also their family members and carers.

Everyone in a support group has a very personal story to tell of their journey, from how it has impacted their lives and those around them to the problems they have encountered and how they resolved these. If your disability is persistent, it can be a long journey – one that many benefit by sharing with others on the same journey.

Different members may also have different combinations of symptoms, different clinical teams managing their condition and different treatment pathways. A support group is a great forum to share experiences, this ‘sharing’ being moderated by the different experiences of members.

What impact can a support group have?

A support group can make big contributions to the body of knowledge about a disability, contributions that can be made available to the world. A project conducted by my support group illustrates what I mean.

With others, I have run the Parkinson’s Queensland DBS support group for 7 years now. Deep brain stimulation (DBS) is a 21st century surgical treatment for Parkinson’s disease (PD) that has received much media attention in recent years. It is often described as a “pacemaker” for the brain and involves permanently placing electrical probes to very specific sites deep in the brain. Much has been published in medical literature that demonstrates the possible benefits of DBS for PD for suitable patients, either on its own or in combination with drug treatment.

But the decision to have DBS is a daunting one. Like all surgery, there are risks and potential benefits. How easy is it to make an informed decision about an elective surgical treatment like this, particularly when there are well established alternative treatments available? Does your doctor tell you all you need to know? Even if he or she does, can you understand and remember what you are told? Post-operative and long-term care is often provided by friends and family. What do they know about the likely journey that follows? Realistic expectations are important to successful outcomes for all concerned.

Because of the DBS focus of our support group I regularly get calls from people with PD, or friends and family members of those with PD, seeking information about DBS or reporting troubling experiences with it. Many considering the procedure ask – how much does it cost and how well does it work? They may well have answers to these questions from their doctor, but they want to know what people actually experience. The collective experiences of the members of our support group network can shed light on both these questions.

How much does it cost: This is an expensive procedure. The total cost of the surgical installation depends on the clinical team, but is now commonly upwards of $80,000. Someone has to pay this, whether in the public or private health system. Most could only consider it in the private health system if they have appropriate private health insurance which covers most of the cost. However, depending on the neurological and surgical team used, they can still face out-of- pocket expenses of upwards of $20,000. For most people this is a big stretch. I know of some who sold their house to raise the money needed. Then there are the ongoing costs. If the pulse generator is fitted with a non-rechargeable battery, this needs to be replaced perhaps every 3 years or so. This is done surgically at a cost upwards of $20,000. Depending on the health insurer, this may be covered in whole or part. If rechargeable batteries are used, these last longer, but we know from laptop computer and mobile phone experience, they don’t last forever.

How well does it work: Parkinson’s disease presents in many different forms. It is not surprising then that the response to any therapy varies from patient to patient. And so it is with DBS for PD. This makes it quite unreliable to seek information from a small sample who have had the procedure. What people needed were representative results showing the range of outcomes and how these vary over time in a form and language that was accessible to them.

While there are many longitudinal studies reported in the medical literature, these are of limited value to the general reader for a number of reasons – lack of physical access to research libraries, the heavy use of technical jargon, and the use of restricted samples. Since we had a DBS network membership database of over 150, we were able to conduct our own survey (or in more academic form here), one that was totally independent and without exclusions.  

So how well does it work? Our survey results are rich in detail. There were significant differences in perceived outcomes between patients, but most experienced improved quality of life. Many symptoms of PD improved following the procedure, but some seemed worse. Some improvements were sustained over time, but others faded noticeably even within 12 months of the procedure.  Another interesting outcome was that the outcomes reported by patients did not always agree with those reported by their carers.

What does this tell us?

Those considering DBS for PD would be wise to research the topic carefully. It is a big decision. Are they a suitable candidate? Are their most troublesome symptoms likely to be improved by the procedure? Our independent user-based survey provides a valuable addition to the information sources available to help with making an informed decision.

Support groups are well placed to make contributions of this nature, so join one if you can and participate!

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