It was one of those weeks that you do not forget in a hurry. It was October 2013, and on this particular Tuesday, I had got confirmation that I was going to be made redundant from my job in agricultural research, which I had been working in for more than 30 years. I knew redundancy was coming but didn’t know when. It was quite sad as I loved my job, but I was excited too, as I had planned out my working future as a freelancer. I started to prepare for all of the things I needed to set up my office for my new career.
Two days later I was in a consultation room with a neurologist. Around 18 months earlier I had been diagnosed with Essential tremor, but it was not getting better. The neurologist asked me to walk up and down the room and within minutes of entering the room I heard the statement that none of us wanted to hear: “You have Parkinson’s disease”. Definitely an “Oh bugger” moment.
What was this PD thing? All I could think of was the vision of an old man shaking in a wheelchair.
I asked: “What can we do about it? Is it going to kill me? Is it curable?”
Medications were the way to go and I was prescribed Levodopa. PD wasn’t going to kill me, but it was with me for life. It’s not curable, but it is treatable.
My consultant told me that I would soon be hearing from Tracey, my specialist Parkinson’s nurse, to arrange an appointment to go and see her. I have learnt over time that Tracey is a complete star, she really knows her stuff. The care and support the NHS have given me at both the West Suffolk and Addenbrookes hospitals, has been fantastic.
Like a lot of things, until it affects you, directly or indirectly, you do not know much about something like Parkinsons. I felt it was important to learn about the disease, so I would know what could be coming and what I was fighting. That night I spent quite a while in “Doctor” Googles office looking through his library. The information is endless.
As I was only 50, I was classed as having YOPD (Young Onset Parkinsons Disease). Learning that some people get the disease in their 20’s really shocked me, not good at any age, but being that young is just so cruel.
Now, Parkinsons is a moving target and is as crafty as they come. It progresses very slowly and you hardly notice a thing until a new symptom appears. Apparently, there are around 40 plus symptoms. It’s a bit like Forrest Gump, when he mentioned what his mother had told him, “Life is like a box of chocolates, you just don’t know what you’re gonna get”. PD is the same.
The first time I got dystonia in my feet I wondered what the hell was going on! My toes started curling downward, feet going numb, a very strange feeling. I contacted Tracey, and of course she knew what to do, and my meds were altered accordingly.
One thing that dystonia has taught me is to cut my toenails regularly. If I don’t, my big toenail slices into the toe next to it. Ouch!
As the condition has developed, my knowledge has increased by regular visits to the NHS website, the Parkinsons UK website and some other UK sites. American sites are OK but a lot are so commercially driven. You can glean some good stuff from YouTube, but care is needed as there are a few presentations that I’m sure come from a story book. So, if you are just starting your PD journey, be careful what to believe on the internet. If its not on the NHS or Parkinsons UK, it may be inaccurate.
I think I now have enough experience to share some of my wisdom. Mind you, this comes from the man who had to go into hospital to have some wisdom teeth put in!
A positive attitude is vital, and it helps if you try not to take yourself too seriously .
You have to own your Parkinsons. I own MY Parkinsons, it does not own me. It’s part of my life, but not who I am.
Try to be organised and try to plan.
Take your meds on time.
Be aware that high amounts of protein in your food can affect how well the meds works for some people.
Try to eat a healthy diet. At Christmas if I eat too much chocolate and fatty foods, my symptoms get worse for the following day or two.
Don’t be afraid to ask for help if you need it. Your Parkinsons nurse, may be your first point of call. Get your Parkinsons nurses email address. PD nurses are very busy and are sometimes not reachable by phone. Using email allows accurate details of meds to be communicated. My PD nurse advised me to experiment with my medication, within the confines of allowed doses etc. This has really helped. We all have different lifestyles, and a tweak by taking meds 10 minutes early or 30 minutes later, may help.
Talk to people. You do not need to tell everyone you meet that you have Parkinsons, but I think family, friends and neighbours need to know. When, and what you tell people is a personal decision.
Try to live the best life that you can. It’s not easy. I love music and comedy, and still attend gigs once or twice a month. I used to dance regularly at soul and funk do’s (although my friends may suggest that what I do is not dancing!). As the PD has progressed, nights out dancing have been very few and far between.
I played local football until I was in my 40’s. Since I gave it up, I have gone to the gym regularly and enjoyed walking daily. Parkinsons has not stopped that, but the gym is now in my garage. There is no doubt that keeping as fit as I can (not to Olympic level, but very close…ish) has benefited me enormously. Admittedly on a bad day I may have to cut short or cancel a session, but I always ensure that I do some kind of exercise. I try to walk twice a day, 10,000 steps when I can. This is sometimes difficult, especially living in the countryside, in winter with no streetlights.
Remember, it’s not about what you can’t do, it’s about what you can do. NEVER give up!
I now find there is never enough time in the day. Once I have exercised and completed any work for the day – I tend to run out of on time, which frustrates the hell out of me.
Each of us Parkies is different. Different symptoms, or different meds, or different response to meds. It’s about what works for you. Over time the symptoms have increased and the number of meds, and with it the dosage, have also increased. I now take around 15 tablets daily. On time has taken a big hit and the tremor has got much worse. Basically, I am at the maximum limit of meds and on time is reduced. Most of the symptoms I have developed are motor symptoms.
Unfortunately, I am now at the stage when the meds start to become less reliable and wear off and are giving me that unwanted side effect, dyskinesia.
When taking meds every 4 hours, I was finding that I was up and down (on and off), all day. For this reason, I now, with the approval of my PD nurse, take my meds in a completely different way.
Around half of my daily meds are taken between 6 and 10 o’clock in the morning. I then take no meds until evening. when I take the remaining meds between 4 and 7pm. This routine allows me to have most of the morning, 7 until around 12 on, the afternoon between 12 and 6 or 7 off, and then on again until around 10pm. This works for me.
The afternoons are tough, but it gives me the whole morning to work, exercise and attend appointments etc. There has to be sometime during the day when I’m off, so this regime generally allows me to choose, up to a point, when it is. It also allows me on time in the evenings to socialise. My friends and family have been brilliant by coming round picking me up for events etc and really going the extra mile for me. I have to say that sometimes, and it’s getting more regular, my Parkinsons wins the day and my plans are thwarted.
One of the main problems I have is sleeping. The tremor wakes me up and I get between 2-5 hours of sleep a night but may wake up 3 to 4 times. My consultant put me on a medication called Opicapone, which has really helped. I can now turn over in bed, and getting out of bed does not take 4 attempts anymore.
Parkinson’s is a challenge every day, it’s almost like having two jobs. Before I had Parkinson’s I had good days and bad days, and it’s the same now. Parkinsons just gives everything that extra dimension.
People tell me that my attitude is good. My sense of humour gets me through those difficult times, but it ain’t easy. Sometimes I regret joining the PD queue at all! There are certain activities that people with Parkinson’s have to be careful with. Cutting your fingernails and toenails being a case in point. But the one activity which some of my friends have raised their eyebrows at, is that I still do my own manscaping! (Google it…) Just because I have Parkinson’s does not mean I can’t look good! Because of the credit crunch I am not only having trouble putting food on the table, but PD means I am also having trouble keeping food on my plate! Mealtimes regularly require the hoover. Peas are not my friend!
When I can laugh at my Parkinson’s, I do, but sometimes I can’t laugh. When it’s 3 o’clock in the morning and my tremor has woken me up every half hour since midnight, leaving my arms feeling like I’ve been digging the garden all night. Or during my afternoon “off” time when symptoms like tremor in both arms and legs, stiffness and pain in my shoulders and neck, stooped shuffling walk and hypomimia (or facial masking) all make their daily appearance. You feel like you don’t know what to with yourself. Basically, when I move around in the afternoon, I look like an emperor penguin shaking an invisible tambourine!
There will be a cure for Parkinson’s, of that I have no doubt. The research being done is fantastic and so very promising but needs long term funding. Until then we all need to make people aware of these conditions by banging the PD drum whenever we can. It’s so important that we raise awareness of the condition, that along with dementia, are said to be the fastest growing neurological conditions on the planet.
Next step for me is deep brain stimulation. I feel so very lucky to be in a position to be assessed for DBS. Firstly, you have to have the symptoms which DBS can improve, generally the motor symptoms. You also need to show that you have a good response to Levodopa. You have to go through months of tests, assessments, MRI scans and meetings before you get the green light. Happy to say that the multidisciplinary team (neurologists, neurosurgeon, and clinical psychologist) at Addenbrookes in Cambridge approved me for surgery in April.
Like many other people I now find myself on a waiting list. The recent strikes may have put my surgery back a bit, but I am completely with the doctors and nurses. They make a huge difference to our lives and deserve better pay.