I am a Writer for ‘Parkinson’s Road’ global support community.
As many of my readers who are, themselves, living with Parkinson’s will know, we patients have to attend a regular consultation with our Neurologists to discuss how we have been doing and to monitor for disease progression. Today, I attended my second review appointment. This time, to help save me a longer journey to Ipswich Hospital, my Neurologist offered to see me at the very charming little country hospital in the nearby seaside town of Aldeburgh; just fifteen minutes drive from my own village.
I was thankful to have my partner with me, for both moral support and also so he could offer another perspective and any additional observations. It’s also interesting to know how the appointment seemed from another point of view, afterwards.
My Neurologist is a man I hold in high esteem; his excellent reputation is well known locally and he immediately secured my trust and confidence when I first met with him last June, 2017, and again in my first post-diagnosis consultation in September that year. My consultations are currently set for every 5-6 months. It was very cold out. The cold air blowing in from the nearby North Sea was brisk, to say the least. We were glad to get indoors and we only had to wait for five minutes before we were welcomed by my Neurologist.
The past several months have seen some ongoing improvements in my ability to broaden my physical stretch-reach and my general fluidity of movement is responding well to my main Parkinson’s medication; Co-Beneldopa. I reported how I have had ongoing difficulty and decline in many of the finer motor-functions; which would be evident to my readers if you could all see the challenge I have with typing and writing this article! I also had to give up shaving and grow a beard, so I would no longer cut my poor face! I had found an increased benefit from taking my medication every four hours, rather than every five and the addition of a medication called Selegiline had also brought some improvement.
One of the things that I did well, in the consultation, was to be able to describe the progress of symptoms chronologically; thanks to having kept a simple ‘monthly overview’ type of journal of the symptoms I have experienced. This enabled me to feel confident that I would remember key symptoms or experiences; something that you can easily lose track of when sat in front of your Neurologist and feeling a little anxious about being there. Yes, though I work as a Psychotherapist, I am still human and I can feel anxiety, too.
I went on to describe the difficulties of the last half year; my Neurologist taking notes and turning to observe me as I relayed my experience to him. I, in turn, observing him as he smiled reassuringly and peered knowingly over his glasses. There have been many; including falling down my stairs at home in November through to the most extraordinary level of insomnia I have ever known; resulting in a major flare up of my symptoms in January and February and the incredible difficulty this caused me in terms of managing both my private and professional life.
I must again thank the many of my clients who read this article and who were subject to cancellations and rescheduling during that time; your kindness, flexibility and understanding was much appreciated. One of my clients told me that he found it uplifting to see that “…a Psychotherapist is just a regular person who lives with his/her own difficulty…” and that my “…openness and dedication to getting on with life, study and career is great role modelling for overcoming the challenges life throws at us.”
I was incredibly touched by such lovely feedback. Certainly, through writing these articles and my Blog, I hope to convey a strong ‘never give up’ attitude. I understand the difficulty of living with Parkinson’s and, no doubt, that applies to most, if not all, chronic illness. I have my dark days, too, and sometimes wonder how on Earth I can continue to experience such debilitating difficulty. Days like that are then replaced with the good days and that is really all that counts. ‘Keep on keeping on’, as they say.
The good news is that I am having a change to another medication. Rather than Selegiline, which is what is known as a MAO-B Inhibitor, I will be moved onto Rasagiline; another MAO-B Inhibitor but one that is apparently likely to be helpful in reducing my insomnia. I’ll also be prescribed a REM sleep regulator and, if my symptoms persist, other medication will be considered to help improve the efficacy of the Co-Beneldopa reaching my brain.
For those readers who are unfamiliar with what a MAO-B Inhibitor medication is, put simply; a medication that helps nerve cells make better use of the dopamine in my brain. You can find out more about Parkinson’s Disease, the medication and treatment at: www.Parkinsons.org.uk
I have come away from my consultation feeling confident about the next steps and the relief that comes from talking with a medical professional who understands and who is, without question, highly knowledgeable. I am also aware of the sense of relief that follows a consultation and this reminds me just how anxious we can get before we meet with our medical support teams. Of significant relief was the news that my Neurologist is not yet retiring. I must say that really was such welcome news, after having heard that he may be.
Perhaps, if you have not done so before, take someone close along with you to your own next consultation with your medical support team, for that added sense of reassurance and also for the benefit of reflecting how the appointment went, afterwards. Think about keeping a monthly journal to record symptoms and difficulties, in readiness for your next consultation. Be sure to describe emotional and physical symptoms.
(c) Dean Parsons. February 2018.