Hello, I am 62 and in my 13th year of PD, accompanied by degenerative scoliosis. Like many others, I have had a journey of discovery to be certain of the diagnosis. I have joined the forum recently, followed some interesting discussions and hope that I can offer some useful personal experience to others.
13 years ago, I was 49, very active, worked full time, had a healthy diet, exercised, lifted weights, jogged and did yoga. Living in the Netherlands at the time, I biked everywhere. After I pulled a hip muscle while jogging, I started to limp on my right leg. Physios, osteopaths, orthopaedic specialists, rheumatologists and GPs. As my husband lived and worked in Belgium and I was often there, I proceeded to consult all the doctors that were available to me. Since I originally come from another country in Southeastern Europe, I also consulted doctors there. As I worked for an international organisation, I had an international health insurance (with co-pay of about 20%) I was free to choose my doctors. This was not necessarily a good thing. I lacked a well-networked GP - the one I had in The Netherlands was nearing retirement and I relied on my acupuncturist who was a qualified GP to guide me. She was able to relieve some symptoms with acupuncture (occasional tremor and tiredness) but she was also getting ready to retire.
Eventually I ended up with a random neurologist in Belgium - who said he thought I had PD because I was not swinging my right arm when I was walking. I had a DATScan which he said confirmed the diagnosis, probably. When I asked him about the actual results of the scan, he said “they’re just numbers”. He was neither sympathetic nor particularly helpful. He offered Azilect (Rasagiline) without much explanation. I turned it down and decided to look for (yet) another doctor. At the same time, having read several books and dozens of peer-reviewed articles, I embarked on a keto diet. That was after I had tried a gluten-free diet. Each for about ten months. I was a disciplined diet(s) follower, there were no marked improvements, in fact keto gave me a terrible cholesterol hike. According to some sources it was supposed to do the opposite. I stopped it soon after.
About a year after the first mention of PD, I started seeing a therapist. This was the best decision I ever made. She helped me navigate the constant health challenges, the change of attitudes towards me in my place of work, relationships with my friends and some of my family. She was also extremely helpful supporting the whole process of acceptance and grief – I thought I would be living one kind of life after 50 and here I was going from waiting room to waiting room during lunchtime and rushing back to work meetings where I didn’t want to be. I lived parallel lives – one of work and responsibilities (extremely stressful managerial position), then another of a parent to two young adults (to whom I didn’t want to say anything too soon) while simultaneously inhabiting what Susan Sontag calls “the kingdom of the sick”, going from one specialist to another.
Being able to go to different specialists was a blessing and a curse. I think I probably saw a dozen neurologists and about half them were not convinced that I had PD. As time went on, my limping was more and more pronounced on the right and I started walking with a crutch on the left side. Looking back, I saw too many doctors who did not communicate with each other and even two that were in the same hospital disagreed about the diagnosis. As I was doing a Masters at the time, followed by a PhD, I had access to my university library online and was able to search and read all the latest articles on treatments and therapies for PD. I felt that regardless of anyone else’s professional involvement, I was the only one fully invested in my own health. At one point, after one of the doctors ordered a much fuller panel of blood tests, I tested positive for Lyme disease, although some values in related tests were borderline. We had spent several summers in the mountains in an area where Lyme disease was endemic, and two summer before I started to develop any symptoms, I had horrendous mosquito bites and swelling on my legs even though I do not recall the classic “bull’s eye” mark for Lyme. After getting second opinions (they differed too) I underwent a 10-month antibiotic and antiparasitic treatment. This was not a pleasant treatment but I stuck with it, thinking that perhaps some neurological symptoms could be related to Lyme. I abstained from all alcohol and even coffee during this time. I was given symptoms questionnaire to fill every month (I suffered from a great deal of brain fog in the afternoon at the time, as well as dizziness etc). All the symptoms disappeared except the limp and the occasional tremor in the right hand.
Even with the limp and tremor, I continued with exercises and strength training although I was getting more and more tired. Gradually, I realised that the limp was due to actual rigidity in the right side. Five years on, I felt I was ready to accept that this was PD. I found the nearest neurologist who after looking through the now sizeable dossier of medical reports and after examining me, said that she had no idea what I had. I thought this at least an honest and open attitude. She brought in a colleague who was an actual PD expert and she also wasn’t sure. They were however happy to see me again. Meanwhile, I contacted a friend from school who was a neurologist in the US and had his own practice. I sent him a summary and some medical reports. He called me and gave me the most useful and informative 45-minute lecture. The most salient point was: it didn’t matter what the condition I had was called, he said. Neurologists build careers and write articles on the basis of patients who have different types of parkinsonian disorders so trying establish the exact one was a waste of my time. The only thing that matters is – will levodopa help or not? And am I on a slow staircase downwards or an escalator? He was blunt and immensely helpful. He instructed me to start with a quarter of a tablet of Sinemet and note down all changes I felt. I went back to the two neurologists and started the Sinemet. No one believed me but 30 minutes after ¼ dose my right leg started to feel differently. Gradually I increased the dose and about 4 months, I was able to walk much better and occasionally without a crutch.
I decided to take early retirement in September 2020. I was only 56 but I was exhausted. I moved to Belgium to be with my husband. I found an excellent neurologist here with whom I have a “debating relationship”: I will disagree with her and she will listen to me and then I will listen to her. I feel a lot more in control of my destiny if the medical professional recognises my ability to make decisions and have informed opinions about my health.
I switched from Sinemet to Stalevo in 2022 and the dyskinesias I had experienced on occasions abated. After a while the doctor prescribed Madopar (Prolopa) in three different forms (instant, normal and extended release) which combines well with Stalevo in my case. The extended release Madopar is a blessing for the night. For the last 18 months, the sum total of my tablets has been 6 - from 7 in the morning to 10 at night, so one every three hours. My neurologist’s recommendation is to keep the dopamine levels as steady as possible. I have occasional gaps where the medication doesn’t seem to work well but I have noticed that it always works if I am having a good time - this is a theory I am working on and it is based on consistent practice!
I had to make many adjustments over the last few years. I struggled in the beginning but thanks to the continued psychological support as well as my husband’s down to earth attitude (we deal with what is, not what we would want things to be), I feel much stronger mentally. The degenerative scoliosis in combination with PD is not operative so a sizeable part of my story is also dealing with chronic pain, difficulty walking and a myriad of other issues, but this introduction is already too long.
Thank you for reading 