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.
Pamela Tilbrook on Deep Brain Stimulation
Recently I was telling anyone who would listen how much I enjoyed the company of others while I drank a good cup of coffee plus how happy I was that I could still participate at Pilates, gym and PD Warrior classes. But this was about to change.
At my six-monthly visit to the neurologist in January 2025, it became evident that an increase in my medication, especially levodopa would be necessary. Levodopa is a neurotransmitter, which helps to alleviate symptoms like tremors, stiffness, and slow movement. The time was coming when I had to consider alternatives to taking the levodopa orally in tablet form.
One alternative was Deep Brain Stimulation (DBS). I had heard of this treatment but had never seriously considered it for myself. In fact it horrified me!
However, my Parkinson’s was now at that stage that I needed to consider it because my body was reacting to the levodopa resulting in quite noticeable dyskinesia (involuntary, uncontrolled body movements).
I investigated other non-tablet oral methods, two of which involved wearing a bag.
One meant I would have to inject myself in the tummy every day, the other required a shunt to be inserted in my tummy. Neither of these alternatives appealed to me so I started investigating the DBS procedure.
I mentioned to my GP and all my specialists what I was thinking of doing and I didn’t hear any negativity. I was referred to a neurologist who has a team of three to carry out these procedures at North Shore Private Hospital.
He arranged for me to attend a number of appointments and sessions with the team members. For example I had several sessions with the neurologist himself, about an hour each in length, another hour with the neurosurgeon and two separate sessions with a psychiatrist.
The psychiatrist even evaluated me for dementia! (And no, I don’t have dementia, thank goodness). At the same time I was reading up on various sites on Google and also found two other women through the Parkinson’s Support Group that I attend, who had been through the surgery themselves. One of these women was particularly enthusiastic and assured me it was the right thing to do.
I made up a list of pros and cons based on the information I had after nearly six months of investigation and research to help me make a decision. One con mentioned to me, was my age.
Anyone over 80 years old, would have to make a very strong case to be eligible. I am now 77 years old, and I was reminded that if I was going ahead with the procedure that I should have it ‘sooner rather than later’.
The decision was made to go ahead with the surgery. Everyone, professionals and friends, were excited for me and I couldn’t wait for the surgery to be completed.
The big day came – 24 June 2025, a Wednesday. I had been admitted two days prior for a number of tests in preparation for the procedure. The first thing that occurred after I was wheeled to theatre was also the last thing I remember of that day.
I had to have my head shaved, so as my head could be contained in a structure that was stapled to it in order to keep my head still. Hence all hair had to go. Oh well it wasn’t as if I had beautiful blond locks cascading down my back!
Hours later, I woke in ICU feeling terrible. It was nighttime with only one nurse and one patient (me) as far as I could see.
Before I left ICU I was alerted to the fact that I wouldn’t be returning to the same room. Why didn’t someone tell me. I wasn’t happy about this, and it meant that someone else had to pack my belongings. For the next couple of days I found belongings in unexpected places.
The first thing that everyone noticed about me, was my baldness. I felt like DBS had taken over my life. I didn’t exist. Everyone I met, the first question after they enquired about how I felt, was how much my hair had grown back. Is it going to grow back curly or grow back the same colour? Are you going to colour your hair if it grows back grey?
Every day I became super-aware of the stimulator below my right clavicle and how important it is to my well-being. Every day there is a new symptom which becomes of heightened importance. Every day I am told to rest, that I have had major surgery, stay home, don’t do too much. And I am bored!
For at least 12 weeks after surgery both the hospital physiotherapist and the neurologist agreed that I could not do any exercise apart from walking. Nothing from the waist up!
I wanted to be able to go to the gym and really move again. I didn’t want to look or act like a silly old woman, but unwittingly that is what I am becoming. I see my reflection in a mirror or shop front and that is what I am – slightly bent over one side, fiddling with something in my bag, (probably getting out my bus ticket) and trying to juggle everything with a walking stick stuck under my arm.
And now, present day? How do I feel? It is six months since I had surgery and everyone (and I mean everyone) is impressed with my lack of movement and swaying due to dyskinesia.
Perhaps I don’t appreciate it as much because I couldn’t see myself continually moving and swaying. Areas which haven’t improved or even deteriorated include my balance (as foretold by the neurologist).
Another unexpected occurrence was my habit of leaning over to the left, so I am stooped with my head following. As a result, I have just started using a walker to help with my posture.
I am coming to grips with my body which is slowly functioning differently. I am trying to look at this phase of the disease as a preparation for the future. However, DBS has reduced my dyskinesia by at least 85% which on its own was very debilitating.
What I have learned over the last six months, like any big decision, is that always some bad gets mixed in with the good.
My conclusion is that DBS has done what it was supposed to do. That may not be saying much but being objective that is the truth.
Advice from a Parkinson’s NSW InfoLine Registered Nurse
Like any procedure, both the positives and negatives of Deep Brain Stimulation (DBS) need to be weighed up closely with your Neurologist.
As with any procedure your response to it will be different to someone else’s. Every person is an individual and will respond differently to every treatment regime.
Your Neurologist will always weigh up the best option with the best outcome for you in mind. DBS is not an appropriate treatment for everyone and is not an option in the treatment plan for everyone.
Discussion needs to be had with your own Neurologist in which the benefits to you are clearly outlined. Similarly, symptoms which may not necessarily improve will be discussed.
We recommend videoing yourself pre- and post-DBS to fully understand and acknowledge the changes this treatment has made to your symptoms and life.
Remember you are not alone in this decision-making process.
The Info Line is here to support and advise you and can provide you with accurate information and connections to others who have experienced this treatment option.
For more information call the Parkinson’s NSW InfoLine on 1800 727 567
