Making the kind of progress that makes no sense whatsoever…

It’s a horrible thing to find yourself in a situation you can’t control. There’s nothing much worse than to find yourself facing ‘choices’ that all lead to the one, inevitable outcome. Like when you’re getting ready for a big event or a night out – you’ve allowed enough time to get ready, ironed your shirt (and your socks…go on), let the cats out, even remembered to turn the immersion off (it’s an Irish thing, don’t dwell on it), when BOOM you get to your car and find you’ve a flat tyre. You could call a cab (while berating yourself for not doing that in the first place) or attempt to change the wheel (you’ve done it before, perhaps not in black tie garb), or you could pull your hair out and jump up and down in frustration…and then call a cab. Either way, the quiet control you had of your evening is gone, your plans are a mess, you’re going to be late and in your anxiety you probably didn’t notice the cats sneak back into the house when you were on the phone. That they now have a free house is not lost on them at all, as they merrily dig their claws into that one last cushion you had managed to keep away from them, up to now. When you live with Parkinson’s Disease you get this inevitable feeling, this loss of control, unfortunately more often than you would like. It’s very hard to describe how this ‘inevitable’ feeling feels: simple things suddenly become major tasks, usually your walk starts to resemble that shuffle you thought was gone for good; and the idea of doing anything more exerting than tiddlywinks fills you with dread. We call this feeling being ‘Off’, and what has happened is that your medication has worn off for the moment. That ‘moment’ tends to lengthen, considerably, the less exercise you’ve taken or the more tired you are. And incredibly the medical profession call this ‘progress’: PD is termed a progressive condition, and those afflicted with it are referred to in the context of how the disease is progressing. How a word that usually has a positive, upbeat meaning can be used to describe the impact of deteriorating health is not just beyond me, it flipping well infuriates me! It’s the kind of progress that makes no sense whatsoever. It is something I’m learning to come to terms with; learning how to cope. I’ve been very lucky with the way I’ve been managing PD to date, but you know what, this fecking condition is always trying to get the better of me. I can’t deny that it has on occasion got ahead of me but by golly I’m all over it and it will not prevail. In football terms it may well be that the score is now 1:1, but we’re still in the first half and I’ve got a free kick just outside the box! Make no mistake, life is good and life is for living. Occasional ‘wearing off’ is not going to change my outlook on how lucky I am and certainly not going to stop me doing the things I need to do. I might perhaps need a little more time to get things done, maybe 5 more minutes…no 15…no, final offer, half an hour…

Still life is better, but life is still good

Just over two years ago I posted an update on my LinkedIn page, entitled ‘My Changed Life’. It was me taking a deep breath and going public in a big way about my diagnosis of Parkinson’s Disease. I was completely overwhelmed by the response I received to that article, and completely humbled by the comments that so many people took the time to write. Since writing that article at the end of 2015 quite a few things have happened to me that I’m not sure would happened if it wasn’t for that PD diagnosis I’ve discovered that I can cook, in a way that doesn’t make family throw up; I can do a small bit of Irish Dancing (the word ‘Dancing’ is used loosely here, more like ‘get out of the way’. Think ‘Pamplona, bull run’ that sort thing); I can deal with the nuisance of tremor and involuntary shaking that comes gift wrapped with PD, by going for a run I am so grateful for all that I’ve learned and experienced over the past two years. This might be a crazy thing to say but this might not have happened had I not been diagnosed with Parkinson’s. I wish I didn’t have this shaking, this disease that makes me who I’m not. But I have it, I have to live with it and I have to get on with living. So I wrote a piece about what I’m doing every day with Parkinson’s. This was published in the Irish Times last Friday. It’s my attempt at sticking it to the PD man! Still, life is good. Would I like it more if I didn’t shake so much? I like it still! https://www.irishtimes.com/life-and-style/health-family/gary-my-daily-routine-living-with-parkinson-s-disease-1.3360151

The Parkinson’s surprise

Most of my musical heroes are now in their 70’s. Neil Young turned 72 the other day. Bob Dylan is 77. Jimmy Page will be 74 in January. Robert Plant, my all time hero, is actually a bit young at just 69. He still sounds incredibly fresh and I can’t wait to see him in Dublin in a few weeks – December 3rd. will be the best Christmas ever! I grew up listening to these artists when they were in their prime in the 1970’s and 1980’s. I bought as many LPs as I could afford and played those vinyls ’till it drove my parents nuts. Back then people in their 70’s didn’t feature in my life hardly at all. Now I’m thinking (or possibly deluding myself, I’m not sure) that ’70 is the new 50′ as I listen Robert Plant on my phone, secretly lamenting music as a download instead of the joy of a vinyl LP. Most of my friends and acquaintances who have Parkinson’s Disease are in their 70’s. Most people associate PD with this age group and older. But the surprising thing is that there’s a growing number of people who have PD who are way younger than 70, even younger than Robert Plant, and, feck it, way younger than me. This is not exactly a pleasant surprise I know; it is definitely something that needs to be addressed as a matter of urgency. ‘Young Onset’ Parkinson’s is a bit of a double whammy. There you are going along, minding your own business, keeping out of trouble, being cool and modern listening to your music on your smart phone. You’ve never touched anything that could cause even the smallest hallucinogenic trip, certainly nothing even remotely like the stuff Led Zeppelin were (ahem) alleged to have ‘tried’. And then you have an appointment with a Neurological Consultant, and wow…a diagnosis of PD is what you walk away with. Seems unfair for anyone, at any age. Seems very unfair for someone who celebrated their 21st. birthday just a few short years ago, and yet it has happened to them. It really pains me to think about it now, but my response to my Consultant telling me my PD news was to say ‘…but I’m 44, not 74??’ I never meant to be so unfeeling to people in their 70’s, the words just tumbled out. It took me several years to face up to this flipping shaking living. When I finally got my act together it was almost too late. Almost. Then I started a fairly intensive exercise and fitness regime, along with all the drugs the Consultant could throw at me. I was fortunate to be able to avail of an insurance plan that meant I could stop working. My stress levels collapsed. I started to sleep (sort of properly) again. I put on weight. I began to experience the joy of being able to tie my shoelaces; button my shirt. Actually, I bought a bunch of new shirts with real buttons, that’s what is was like to feel like I was living again. Alas, I have yet to rewire my old stereo so my vinyl LPs remain under wraps for the moment. For most people who have Young Onset PD it’s not like my experience. People in their 20’s, 30’s, 40’s and 50’s who have families, mortgages, careers, and who may not be able to access the kind of things that I’ve been so fortunate to receive. They are living with PD every day, many of them not wanting anyone to know about their condition. And yet amazingly they carry on, despite ‘Off’ periods; despite the anguish and the worry ‘will people notice how I walk?’; despite the almost total lack of understanding that anyone so young could be diagnosed with something that has been with us for 200 years. It kinda feels really unfair, doesn’t it? And yet, and yet…here’s another Parkinson’s surprise: I’ve had the brilliant experience this year of getting to know many people with Young Onset PD. It’s just amazing to be with a bunch of people who are facing the challenges of every day life with unbelievable positivity and wicked senses of humour. Despite the drain of energy every day, there’s flipping great energy in this group. It’s fantastic, it really is and it really needs to be in the spotlight for the wellbeing it produces. I love my PD friends whatever age they are! Most of the time we feel we’re on a journey, even though we’re not quite sure where we’ll end up. PD isn’t a killer, but it isn’t the life and soul of the party either. For sure the life and soul of the party lives on in each of us, facing the future with a sense of reality and a greater sense of humour. Long may this life continue, defeating PD at every turn. Surprisingly, most of my friends don’t know much about Robert Plant. Heroes.

Parkinson’s Disease? What a Whole Lotta Love!

It’s a very scary world. It’s also a very beautiful world. Both of these descriptions have applied in my own world in recent months and I am very lucky that the latter experience has occurred much more often than the former. Indeed, I would go so far as to say that I’ve been utterly amazed by the warmth of feeling I’ve received since I went public about my Parkinson’s Disease late last year. The comments I’ve read; the phone calls I’ve received; the cups of coffee I’ve shared!…the whole experience has been something truly wonderful amidst a journey of discovery and anxiety – a real sensing of possibilities despite the uncertain road ahead. These feelings of goodness, of support, of kindness…they’ve just been incredible! Robert Plant sings it at the top of his voice with Led Zeppelin: what I’ve been experiencing over the past few months really is a ‘Whole Lotta Love!’ My regular day is a very different day, now that I’m not at work anymore. I exercise. I stretch. I walk, I bike or I run. Every day. Along with taking medication regularly, these are the things I have to do in order to delay as much as possible the further onset of PD. But the brilliant thing is, I no longer have a commute – fantastic! I’m never late! My career may well be over, but hey, I’m getting fit! My priorities have definitely changed! Seriously though, while I am most definitely an optimist, I will admit to being scared at times. There is a huge amount of research on-going into Parkinson’s and it does feel like there is a major breakthrough just around the corner. That said, we still don’t know what causes PD. We still don’t have a cure for PD. And still, the most effective drug in combating PD was developed in the 1960’s. I have to say, that last point makes me wonder…just what kinds of drugs were the Flower Power generation developing back then? Should they have been given tax incentives for further ‘research’? I mean, sure, they were tripping out, but I’d be lost without my levodopa 🙂 My struggle with PD continues, but now the struggle feels different given my experiences over the past year or so. I can now say that I believe the best course of action against PD is an interdisciplinary, holistic approach that combines many different interventions, along with medication of course. Over the past year I’ve been very fortunate to experience each of the following: Physical Exercise Medication Counselling Speech & Language Therapy Physiotherapy Dietary advice Occupational Therapy Use of Technology Support Groups All of these ‘interventions’ have allowed me to take back control of my life; to not be afraid all the time; to regain my confidence. I want everyone to know this, I feel so strongly about it! Ok, my brain is not what it used to be. That’s a fact, that’s Parkinson’s. But I’m actually stronger, physically and mentally, than I was a year ago. Hey, I can remember stuff!! Ok, ok, I can’t fecking remember my blasted ‘Verified by Visa’ password…but who on earth can? C’mon Amazon, do something here. I want to buy things. I never wanted to speak about PD, but then, I never wanted this fecking thing in the first place. Ironically, the things I’m doing now and the people I’ve been so lucky to meet wouldn’t have come into my life at all, if I hadn’t received that diagnosis in 2009. For me that just proves that there’s goodness all around us, in everything we see and in everything we do, and even in the things that just happen for apparently no reason at all. And the future? It’s bright, with a slightly dark edge! I’m trying to be realistic in my optimism (well, after all, you know I’m a West Ham supporter and us ‘Happy Hammers’ are brutal optimists). Joan (my wife) and I are attending the World Parkinson Congress (WPC 2016) in Portland, Oregon next week and I’m going to try and get some attention for my ‘interdisciplinary interventions’ thingy I mentioned earlier. Security may well throw me out if I get too annoying, in which case I will repair to Kells Bar downtown for some light refreshments. I have much to be grateful for, I tend to think this world is more beautiful than scary, and I definitely know I wouldn’t be in the good space I’m in now without the unbelievable support of my family. They encourage me, criticise me, and care for me; in fact you could say they give me a Whole Lotta Love!