Real life, all true.Revisited history & experiences www.imstroked.com Greg Cooney, Author, Victim Mary Cooney, Editor, Photography, Wife. Bernadette Cooney, Subeditor Anna Langen, MSc. Photography 45,0010 word s 9 chapters 5 appendices 28 illustrations All Rights Reserved. V1.3 (2013,2014,2015) 19 tips I’m ‘stroked’ to be alive www.imstroked.com Other Books: Look Who’s Talking Grass is Greener Tech Wreck DISCLAIMER: The following are dates, activities and specs recalled some 35yrs after the event, and to best of abilities. I’ve suffer a brain injury though. As such I won’t & can’t accept responsibility for errors or omissions! Email verified changes at above site please. CAVEAT: Images are trawled from web and had no visible copyright, and as such are gleamed public domain. Remember this is a NFP i.e non-commercial venture. But if you deem to be an owner who doesn’t wish to share, plse email me via imstroked.com. 2 Testimonials A " book that can make you laugh and cry, Just 'Stroked' to be Alive is a story about someone with more determination in his left toe than an army division, the importance of every small step of independence, and the sometimes very strange effects morphine can have. A must read for anyone who has, or knows someone who has had an impairment." J Gluck A " Revelation of the NZ Healthcare Service Pathway of Treatment & Management of Stroke" - Anonymous RN W " hen a friend or loved one suffers a stroke, or some other kind of brain injury, you are at a total loss. The inability to communicate is crippling not just for the victim, but for those around that want to help. What Greg has written here is a first person account that will be incredibly useful not just to victims of brain injury, but those close to them. Charged with the testosterone-driven, blokey humour he has always had, Greg takes us through his experiences of Brain Stem Stroke, Locked-in Syndrome, many of the technicalities and a deep desire for pudding. He also offers hope." D Bailey “G ot me reading from the first page to the last again and again. What a wonderfully, honest account of what could have been a man stuck in a lonely, isolated world. A story of amazing bravery, perseverance and optimism that is truly inspiring. Particularly striking is the fact that the writer does not hold back on painful and discomforting details; every step of the journey is well explored from a personal point of view; contrasted with in depth neuroscientific research and finishing off with a candid account of the writer’s passage through the New Zealand Health Care System. “A well-rounded, well-documented memoir; that certainly stands out due to the writer’s wry humour and his ability to transcend his vivacious personality into his writing. “ - Anna One man’s frank discussion and perspective on his journey into a debilitating accident, including some self-inflicted, funny, scenarios of his life before it and his army antics. I’m ‘stroked’ to be alive This book is designed to be green, i.e. it should only be shared online and read online digitally and NOT be printed. Save our trees. If you must print, do it double sided or in booklet format please. I am Sony™, Nook™ , Zinio™,Google Play™, Kindle™, Kobo™, Calibre™ and Adobe Reader™ friendly! Dedicated to my wife Mary and daughter Emily, who never gave up on me and visited daily, I couldn’t or wouldn’t want to, move forward without your care, nurture and limitless patience. And also Anthony DeVeld Robert Bailey Pauline Hubbard Anne Potts 4 Table of Contents Testimonials ............................................................................................................................................ 1 Table of Contents .................................................................................................................................... 5 Table of Figures ....................................................................................................................................... 5 Forward ................................................................................................................................................... 7 CHAPTER 1 – A Black Day ........................................................................................................................ 8 CHAPTER 2 – E.R Misdiagnosis .............................................................................................................. 12 CHAPTER 3 - Early days in the Stroke ward........................................................................................... 17 CHAPTER 4 – Morphine Dreams ........................................................................................................... 24 CHAPTER 5 – The move to Cavit/ABI .................................................................................................... 31 CHAPTER 6 – The Move to L.F.T ............................................................................................................ 47 CHAPTER 7 – Those lazy hazy crazy days ................................................. 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CHAPTER 8 – Prognosis and outlook. .................................................................................................... 57 CHAPTER 9 - The final countdown ........................................................................................................ 74 optional reading Appendix I – Letters from my family ..................................................................................................... 75 From Mary............................................................................................................................................. 76 From Emily ............................................................................................................................................ 76 Appendix II – Extract from letter of complaint to Commissioner ......................................................... 77 Appendix III – Commissioner’s Report .................................................................................................. 79 Appendix IV – ABI Discharge Report ..................................................................................................... 96 Appendix V – Carers or patients resource links .................................................................................. 106 Table of Figures Figure 1 The human Brain ....................................................................................................................... 7 Figure 2 Me in the first few weeks .......................................................................................................... 8 Figure 3 Our bach on the coast ............................................................................................................. 10 Figure 4 Typical sunset from the bach .................................................................................................. 10 Figure 5 Normal MRI scan ..................................................................................................................... 12 Figure 6 My MRI scan ............................................................................................................................ 12 Figure 7 My fleet, as restored by me .................................................................................................... 13 Figure 8 Our humble 'wee' abode under the knife ............................................................................... 14 Figure 9 Outside soaking up sun, hospital grounds .............................................................................. 28 Figure 10 Views of some of my 4-garage mancave .............................................................................. 29 One man’s frank discussion and perspective on his journey into a debilitating accident, including some self-inflicted, funny, scenarios of his life before it and his army antics. I’m ‘stroked’ to be alive Figure 11 In room 13 at cavit [abi] ........................................................................................................ 35 Figure 12 Excerpt from my food diary .................................................................................................. 36 Figure 13 Christmas at cavit .................................................................................................................. 37 Figure 14 Kensington trackball mouse substitute ................................................................................ 37 Figure 15 The Circulation Booster ......................................................................................................... 39 Figure 16 First day out in my shiny new ride ........................................................................................ 40 Figure 17 Exerciser that’s not strictly needed ...................................................................................... 41 Figure 18 Left Handwriting, before and after ....................................................................................... 42 Figure 19 Creative D100 Bluetooth speaker ......................................................................................... 44 Figure 20 Outside at Cavit [ABI] ............................................................................................................ 45 Figure 21 The ramp that surprised me ................................................................................................. 46 Figure 22 Main entrance at LFT ............................................................................................................ 47 Figure 23 In my room, studio 10, LFT .................................................................................................... 48 Figure 24 Early cutlery I use to have ..................................................................................................... 49 Figure 25 Nutilis, click image for more info .......................................................................................... 49 Figure 26 My 'bad' right hand having therapy ...................................................................................... 51 Figure 27 On the hand machine ............................................................................................................ 51 Figure 28 Old main entrance at LFT ...................................................................................................... 56 Figure 29 Outside dining at LFT............................................................................................................. 56 6 Forward Click for website pertaining to brainstem strokes. You can in fact, click any highlighted underlined word [url link] for more detail, try it! BUT you will need to be reading an online edition [PDF or EPUB] , and have an active internet, or Wi-Fi connection on your device or PC first. If you are reading this there’s a good chance your loved one or someone in your family has been directly affected by stroke, either that or the internet’s down again and you're extremely bored. I’m here to remind you there IS light at the end of the tunnel. These may be dark days now, but once you hit rock bottom, the only direction left is UP. Never forget that, ok. Figure 1 The human Brain You must be thankful you’re alive and not dwell on what you have lost, but what lies ahead of you. In this final revised edition, I include some antics of my past life and a whole new chapter on my army career while under the influence of drugs and alcohol. In order for you to better understand my state of mind and just how lucky I’ve been. You will learn about New Zealand, you know that little country that no-one remembers; and if they do, think its Australian! Mystical, beautiful land of giants, rugby giants, rowing giants, shot-put giants, yachting giants. Hhomeland of the bungee, the jet boat, Britten superbikes, the worlds fastest Indian, Jackson’s hobbit and l.o.t.rings and much more. Look, if an old druggie can get back on track, what excuse do you have? In the 6 months since I first wrote it, I have become more lucid, and have remembered more. One man’s frank discussion and perspective on his journey into a debilitating accident, including some self-inflicted, funny, scenarios of his life before it and his army antics. I’m ‘stroked’ to be alive Figure 2 Me in the first few weeks CHAPTER 1 – A Black Day The last day of my previous life, or should I say the first day for the rest of my life, began and finished on the 30th of January 2011. I had been 48 years old for three months, when I was struck down by the stroke-to- end all strokes. A clot in the artery (Ischemic) that supplies oxygen to my brainstem. The brainstem is found at the base of the brain, is the size of an apricot and provides the most primitive of human functions. Such functions as alertness, laughing, motor control, digestion, communication, swallowing, gesture, temperature control, eating, bladder control, even the act of breathing itself. Basically, the signals sent from the brain become disconnected from the body, sensory information is reported back, but in the end you are left paralyzed and mute for the most part. It is normally fatal. I wish to expand on the laughing bit for a moment. The stem controls the laughing, I have no functioning stem so the laughing can be uncontrollable and is set off by other people laughing, or indeed for no logical reason. I will laugh at the most inappropriate things and times, like someone unintentionally hurting oneself. The more I laugh, the harder it is too stop. I mean no disrespect; please understand it’s outside my control. I also laugh if uncomfortable, e.g. heat or tired etc., it is my coping mechanism. So don’t get a complex, I’m not laughing at you! 8 Just a paragraph or two on temperature control, if I may, When I had my stroke it decimated my ability to self or auto regulate my bodies temperature. For much of the first year in recovery a fan or two was on 24/7 to keep my temperature stable. While I’m much improved, with other parts of the brain taking over control, I have limits at extremes. They are anything below 20C where range and mobility suffer terribly to the extent I will have trouble opening my door, or commanding my chair. At the other extreme, anything above about 28C, I begin to overheat internally, the brain suffering most. I will become irrational, confused, short tempered and irritable. It’s your job as my carer to then quickly lower that core temp by opening both doors, placing cold flannels on back of neck, and forehead etc. Yes am aware you have to prevent exposing me to other residents, that’s fine, but STOP what you’re doing, i.e. hoisting, undressing etc. it is extremely important; at just 10 deg more, my brain can stop functioning, my organs will soon follow, and your left answering to the board. It boils down to this do want an indecent exposure, or a death on your hands? As I pen this, my clock announces its 31, and that’s with both doors open! This is why I sleep with the sliding door and side window open, to create a draft. PLEASE DON’T CLOSE THE WINDOW EVER, I function better being cold not hot. I cannot even tell you the weather that fateful day; as my mind held more important things for me in store. Allow me to show a forum post that shows the gravity of the situation, and how worried my poor wife and daughter (who’s nearly 16 now) must have been. “my husband had a brain stem stroke two weeks ago. It wasn't diagnosed although we told doctors we thought he was having a stroke, so I am very upset. He cannot move anything other than eyes, and can cough and swallow some. His breathing is not great and needs an oxygen mask. The doctors are definitely wanting him to go, e.g., let a chest infection "take him" in their words. We asked that he be fed by naso gastric tube -- against the doctors wishes, so he is having food. I get these small glimmers of hope that he could improve, but mainly it seems he will die. It is a living nightmare for him and us all. He is 48 and we have a 13 year old daughter.” Let me take you back six weeks or so before my brainstem stroke. It was during this time I began suffering migraines, the shimmering light, the wavy opaque sheet of glass floating or wandering in front of my eyes, double vision, depth of field vision perception problems, periphery collapse - in fact the whole damn pre-stroke shebang. I still have sight problem’s today, small print and print at a distance is blurry. Now how much is attributable to the stroke and how much is just old age I can’t say. I like 1.5x for reading, notice I spell ‘like’ and not need! I also wear sunglasses to minimise the One man’s frank discussion and perspective on his journey into a debilitating accident, including some self-inflicted, funny, scenarios of his life before it and his army antics. I’m ‘stroked’ to be alive glare from the light of day. Tip: fit those slip on ties to all glasses, that way you can put around neck, and not lose, or worse, run over them! The attacks were so crippling they would chop my legs out from under me and I’d find myself on the ground struggling to get up. This would happen quite frequently and without warning. Quite freaky, as I was often up alone in the wee hours of the morning. I remember having to literally crawl on my hands and knees down the hallway and to bed. I did not know it at the time, but these precursor symptoms were TIA’s (Transient Ischemic Attack) - essentially mini strokes. What was odd about that is that I’d never suffered a regular headache, let alone a migraine. In fact I didn’t know how to recognise a migraine, so consequently didn't Figure 4 Typical sunset from the bach Figure 3 Our bach on the coast know what was happening to me. That was until I happened upon a Readers Digest at our holiday Bach. “Hey,” I exclaimed “that’s what’s happening to me.” At last I had a symptom I could explore. Little did I know that was the last time I would see the Bach and the little beach community of Waikawa beach. I had owned the Bach for as long as I had my daughter. I called it ‘Government House’ as it was bought from profits from my computer consultancy business. For 15 years I had carried out contracting work with the Parliamentary Office; the legislative governing hand. Like my vehicles, bikes etc. the Bach needed to be sold after the event, necessary to pay the bills now that neither of us can work. You see it affects both of us, Mary has to be my fulltime carer now. Anyway I digress, three weeks before I had my stroke; I went for a cardiac risk assessment. Based on my high cholesterol, my weight, the fact I not only smoked cigarettes but chewed nicotine substitutes such as Habitrol at the same time - (great for that extra 'hit’ and especially at times and public places you couldn’t smoke anymore) my risk factor wasn't stacking up in my favour at all well. 10