An insight to living with Parkinson’s Disease

It is often the case that when diagnosed with PD the patient is shocked, scared and fearful that death is just around the corner. Let me allay any fears by saying that PD sufferers die with Parkinson’s not of Parkinson’s. Many of those who have donated or sponsored the IOR team have mentioned that a family member or a close friend suffers from PD. We are all in the same boat, excuse the pun, because the one thing in common between us is it doesn’t take away your life, but it takes away the pleasures of living your life’. I have been part of the IOR team since mid 2022 and like all members of the team I have been raising sponsorship and donations by supporting Chris at public speaking events and using my network to promote awareness of this epic venture. I was diagnosed with PD 13 years ago. A GP visit, followed by lots of scans, an appointment with a neurologist who was extremely thorough and asked 101 questions resulted in a diagnosis of PD. The neurologist considered I had PD for 2 years prior to his diagnosis. This was based on a number of issues on the left side of my body. Muscle pulls, plantar fasciitis, frozen shoulder and so on. I just considered these normal sporting injuries. The next question was - how did I get Parkies – well no-one knows. I served 34 years in the Navy but can’t confidently say my service career caused it. Was it dehydration of the brain through lack of water when fitness training or is it hereditary? No family member that I can recall admitted to having Parkies and if I ever saw my grandparents shaking it was because they were old. I am 67 and when people meet me they probably think ‘there’s not much wrong with him’. Their instant judgement on seeing me for the first time is superficially true but it’s not quite like that on the other side. The casual observer doesn’t see the bit that has me sound asleep but at the same time thrashing about in my bed at night because my legs/arms won’t settle down. Or when my wife Isabel has to wake me up because I’m reacting violently to the subject of the dream.

These dreams are actually played out be it boxing; scoring a goal; bowling out some of the world’s greatest batsmen or beating Roger Federer at Wimbledon with a beautiful cross court forehand volley. I actually go through the motion in full. With my naval background I often shout at the top of his voice orders to sailors and sometimes those orders contain words of only one syllable. Sometimes, I will just giggle for minutes at a time. These actions happen during the early part of my sleep pattern when I’m in a deep sleep. This can last up to four hours and for the rest of the night I am a very light sleeper. PD and sleep disorders are well known. Despite the mixture of Parkinson’s drugs that keep me stable for reasonable periods I never know when an attack, as I call it, may happen. The drugs have many unwanted side effects. Every 4 hours during the day I pop a pill and before going to bed at night another extended-release pill. I take additional pills to control the side effects. The casual observer doesn’t see me in the morning with the difficulties in trying to get out of bed and my wife trying to dress me because my limbs won’t react; they don’t see me shuffling around the house because the night drugs have stopped working and the daytime drugs haven’t kicked in. When they do, I can make a reasonable attempt at shirt buttons or shoelaces. My wife says 'it’s like waking up with an old man who gets younger through the course of the day'. Unfortunately, it doesn’t last and I go to bed with the same old man that I dressed in the morning. The Parkinson’s medication also causes dyskinesia. Despite being given a drug to counter act that during periods of Parkinson’s activity I still suffer from continuous movement of my limbs, particularly my legs. It doesn’t show so much when I’m standing up but when I’m sitting down at the table the person opposite often gets fed up with being kicked. Out and about PD can cause much embarrassment. When I get freezing of my gait in the shopping centre my brain shuts down not allowing my legs to step out. I’m embarrassingly stuck to the spot. When I do take the initial step it looks as though I’ve lost my balance and starting to fall. People stop and stare thinking I’m drunk. Very few ask if I’m OK; they just avoid me. Socially, can be difficult to. Its a risky business sending me to the bar because if I get you a pint it may, not always, get back to you as half a pint. During my public speaking events, should I get a tremor I remember the words of the Scottish comedian Billy Connolly who says, ‘when your hands start to tremor don’t put them in your pockets, it doesn’t look good!’ I left my employ as CEO to RSLWA in 2016 because of PD, and not knowing how quickly it would advance. Isabel & I decided it was the time to do our bucket list just in case I detiorated at a rapid rate. She made a good decision for me. I should probably have listened to her more regularly through my career. Our timing was perfect as my PD didn’t affect my travel back then and had I have stayed at the RSL for another 5 years I would have left at the start of COVID. When travelling I do get very anxious. Crowds and airports never bothered me previously but now those crowds do. And if the temperature is a bit warm it causes anxiety and makes me sweat profusely and tremor. Just what Mr Border Operations Officer is looking for! I could go on but the truth is Parkinson’s is an insidious and destructive condition which saps ones energy, independence and freedom of movement. Despite all of this I’ve had a pretty good run in the 13 years since diagnosis. I’ve no idea what the future holds but I can still drive so still have my independence; in an effort to reduce muscle loss I cycle, box, play tennis and golf as maintaining a degree of physical fitness most definitely helps. One of the most important things to remember when diagnosed with Parkies is to maintain my sense of humour. Every day it takes a little more from me. I have to test myself daily as to how quickly it’s moving. I do this by asking myself if I can do yesterday’s most difficult task again today. I must admit that fighting the battle day in day out, week in week out and year in year out does get tiring. It’s a challenge. I fight within myself so that it’s the last thing that people find out about me. At the end of an event if someone says I had no idea you had PD then to me that’s a result. I hope I have put before you the reality of what people with PD face. Every PD sufferer is different but with some similar aspects. I’m sure the researchers and scientists will come up with a cure for Parkinson’s, maybe not in my lifetime but I’m sure in my grandchildren’s time. However, to do this research costs money and its people like Chris and the team that take on these adventurous challenges in order to raise money and awareness of PD that will help find that cure. You can rest assured that your donation will help.

With gratitude,

Phil Orchard