Those of us in society who live with chronic illness will all, no doubt, have seen our usual medical review appointments reduced this year, while the NHS focuses on coping with the Covid-19 virus. Though completely understandable, this does mean that many of us will have missed out on vital medications reviews and ongoing assessments of our illnesses.
I have been incredibly fortunate. Until early 2019, I was provided with exemplary care by my then neurologist, Dr. Tim Lockington at Ipswich Hospital. All good things have to come to an end and, after staying on longer than he would otherwise have done, Dr. lockington finally retired that year. This is a very well deserved retirement, in my opinion, but certainly his absence was a loss to me and, no doubt, to many other patients.
I saw a locum neurologist later in 2019 who, in fact, brought two other neurologists into the session with him. A little like buses, I went from having one neurologist, to none and then three arrived all at once! My case was reviewed, my meds were reviewed and increased as a result of ongoing deterioration. I was advised that within two years I will likely be presented with the options of Deep Brain Stimulation (DBS) surgery or a Duodopa Pump; the latter pumps medication from a cassette that I would carry in a bag, into my intestine through a tube over sixteen hours per day.
The reason this is being signposted, is that medication is increasingly becoming less effective. I experience the ‘wearing off’ of my medication much more quickly now and the neurologist suspects that my body is not absorbing enough of the medication for it to reach those of my brain cells still alive to make use of it. These brain cells are dying, increasingly; caused by Parkinson’s Disease.
This past two months, I have experienced quite a considerable worsening of my symptoms. Back in late spring, the locum neurologist offered me a telephone consultation; still unable to offer to see me in-person and he agreed even then that I had deteriorated since he had seen me at the end of 2019. He was not, however, able to review my medication and offer any change without seeing me in-person. Catch 22; for in-person appointments were not allowed. So, I have gone on to get worsening symptoms.
The purpose of me writing about my experience of Parkinson’s is twofold. One; I know many people out there are going through the same and, just as I found when reading the posts of others with Parkinson’s, I know that people are comforted when they can see that they are not alone in facing difficulty. Two, that I hope to raise awareness. Few people would necessarily know of Parkinson’s or of the specifics of treatment, such as DBS or Duodopa Pumps, for example.
I had to request a neurology appointment, recently. I now need to have my medication reviewed for my symptoms are interfering hugely with my day to day life. One of my symptoms is called REM Sleep Behaviour Disorder and another is Restless Legs Syndrome. Both disruptive but the insomnia which accompanies them has been extreme. It has been common for me to have around two and a half hours sleep in any twenty-four hour period, with some days going forty-eight hours without sleep. I cannot even begin to describe how much this impacts upon general well-being and day to day living.
Here is a photo of my bedsheet one morning after a particularly severe bout of restless Legs Syndrome. I had literally ripped my sheet!
I took it upon myself to increase my prescribed medication myself. Again, I do not advocate that anyone else should do this. You should always consult your prescriber and I, unlike many, have former experience as a medical professional and medications dispenser.
I contacted my Doctor and advised him of my new medications dosage and asked that this be advised to whoever will be my new neurologist and that prescriptions be updated accordingly. I will now be meeting with a new locum neurologist on November 17th to assess how I am doing, given these changes and my report of worsening symptoms.
How do you prepare for a review with your neurologist? As my appointment draws closer, I will start to keep a record of my daily symptoms, in order to be able to discuss them more fully with the locum neurologist in November. I’ll keep a record of my daily medications doses and I will keep a bit of a journal so that I have some notes to refer to, in the appointment. It can be so easy to forget what you want or need to describe when in a neurology appointment. A typical symptom of Parkinson’s is to go blank; to forget. So, preparing is helpful all round. This will be simply in the form of bullet point notes and a few anecdotes.
One of the difficult aspects of seeing a medical professional for a degenerative illness, is that no matter what your hopes are of help being offered, you know that the illness is only getting worse. That is the simple fact and so all that can be hoped for is something to ease the symptoms. There is no cure for Parkinson’s Disease and year by year, it gets worse.
I would urge anyone in my situation not to lose hope; reseach is ongoing at a pace and medications are either being discovered or made more effective every year. There is hope. That said, I would also urge those in my situation to accept the reality of degenerative illness. We must be mindful that our illnesses are going to get worse and we must make an effort to assess our needs, our risks and our expectations constantly. This is the best way to ensure that you are doing all that you can to stay as well as you can, as safe as you can and receiving the best level of support that is available.
I will post an update of the outcome of my forthcoming neurology appointment once completed. In the meantime, feel free to share about your own situation in the comments below; taking care not to disclose personally sensitive details, of course.
(c) Deano Parsons. 2020.
Categories: Living With Parkinson's