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Stroke Survivor - male
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About PaulNash

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    Associate Member
  • Birthday 05/18/1958

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161 profile views
  1. Hi Betsy It does get easier with time. I've been through the same stuff recently (still do at times now). However good I may be feeling or however much I think that I will remember because this is important and simple and just one thing, I write it down in a page-a-day diary. I have several that I lug around with me, one for work, one for home, one for my wife (extra-VIP-status), one for stuff that I want to do. I'll make time several times a day to go through my notes and update my calendar with things that have to happen on specific days or reminders about stuff. It is frustrating and chews up time, but I'm getting used to it. When I don't understand my notes, I find that people are not that surprised when I call them to say "we spoke earlier and I have a reminder by I don't understand what I wrote; can you please refresh me?". Half the time _they_ don't remember either! I think that we have tendency to romanticize just how good our memories were before the stroke, which is not to say that the deficits are not real and measurable. My other strategy is to ask them to email me a summary off the conversation with any specific to-do items in a list with dates. Most people that I deal with are pleasantly surprised by quite willing to do it, and even think that it is a good idea. And this is without explaining about memory deficits. When I talk to my disability insurers, I _always_ record the conversation (speakerphone & then record with a portable dictation thing), and let them know that I am recording. Apart from helping my memory, it also stops some of the bullying as they try to persuade me that I am all better now and they can stop paying. I feel for you (for all of us); it does suck, big time. I just hope that some of these ideas help. Paul
  2. Happy birthday! And may they get happier every year/ Looks like your planner is away out, unless you used a profile picture from when you were in your twenties :-)
  3. I rage from time to time, and am resigned at others, and feel grateful that I have as much function as I have at yet others. It varies, depending on circumstances, tiredness, stress, and so on. One thing that never fails to uplift me, however, is the banter on this board. Makes me feel quite privileged to be a member of this exclusive club, even if the entry fee is rather high :-)
  4. You must have the patience of Job not to have bitten their heads off.
  5. More nervous, hesitant, withdrawn than before. Far less willing to take risks. None of this is very surprising. It's only been 22 months, and I have noticed that I am a bit less withdrawn than 6 months ago, and I'm working on improving this. Fatigue, however, is still a killer, and pushes me right back into withdrawal mode. My wife would say that my personality has diminished since the stroke. My neurologist says that things will improve over time. He also says that things will never improve, so I guess that I can take my pick :-).
  6. Contact the local medical association's disciplinary committee to have a word with him. Apart from the issues of trying get him to listen, he might kill you and might kill someone else. He needs some to give him a swift kick in the *beep*. Or needs to lose his license.
  7. Coming into this late, but I have just started with an executive function therapy group at Baycrest Hospital (Toronto's primary cognitive center), and all sessions start and finish with a 10-minute mindfulness session. We (the class) are all beginners, and it is probably watered-down for us, but it has changed my life. Literally. Since my stroke nearly two years ago, I have been indecisive, and my brain has been cluttered. In the past two weeks I have felt rejuvenated and much more in control. Most importantly, much more accepting of who I now am (even as I discover who I now am), instead of fighting myself and resenting myself for not being the person I once was. It's early days yet, but this is a proving to be a real life-changer. A positive spin-off from my stroke :-)
  8. Dear Nancy My heart goes out to you; if there was any way to take away some of your pain, we'd do it like a shot. You probably have your own answers to your questions, but here goes anyway: You can only do what you can do. It will not help him or you for you to destroy yourself totally; you need to stay as strong as you can and to live your life. He has decided to die, which I don't agree with but can sympathize with. It must hurt you enormously to watch, and I am sure that he would not want you to be in pain. You are terribly brave to spend the time that you do with him, and you cannot do more than you can do; at least not without damaging yourself badly in the process. For your own sake, and for his, spend what time you can without damaging yourself further. You have been a wonderful wife, companion and helpmeet, but the time has come when he wants to let go. It is time for you to look after yourself, recover from this and start to live again.
  9. I agree wholeheartedly about "Ghost in my Brain". I am (was?) an engineer, so it really spoke to me, and gave me a metaphor for what was happening in my brain. I found Doidge interesting, also Barbara Arrowsmith-Young (born with half her brain missing) and several others, but got nothing from them other than a general sense that things will keep improving. I love Philip K Dick and his literary successors, William Gibson (coined the term "cyberspace" in his novel "Neuromancer) and Neal Stephenson. Also currently reading the latest John le Carre (sequel to "spy who came in from the cold"). It's just s_l_o_w. I used to churn through books at an alarming rate, now I get exhausted after 10 pages, and have to re-read 8 pages when I pick the book up again because I have forgotten what I read the day before.
  10. Wow! There's a tidal wave of sympathy heading your way from Canada! You are far from alone. Having dealt with disability insurers , I will send all my psychic powers South to help speed up your hearing. My stroke was just under two years ago, so I'm a comparative noob, but I can relate. Some aspects of life are difficult to navigate with cognitive problems but no (or few) physical symptoms. Many people are intolerant, as they do not _see_ a disability. I have had co-workers think that I am just goofing off or drunk on the job at times, and fatigue can be a major issue. I used to be a master-multi-tasker (hey, that rhymes!); now I have retrained myself to work on one thing at a time and make copious notes along the way, so that I can remember what I am doing. I don't have any sage advice, just know that you are not alone, and that there are a whole pile of us out there who are rooting for you. And you will aways find love and friendship and sympathy here.
  11. Trust me, we know what you've been through and are still going through. Not in detail; we are all as different as our strokes, but we know big picture. It's one of this things that gives me great comfort about this site. Even just reading through old threads make me understand that there are people out there who understand how it now feels to be me; viscerally, from the inside. I get a lot of love from my family, without whom I would not survive, and they try to understand, but I hope that they never will. Because the only people who truly understand are those of us who have been there. The good news is that things do get better. You adapt, you forget, you come up with strategies to cope, and you can have the pleasure of discovering old delights for the first time, all over again :-). And most people are kind and compassionate; you get to see a lot of the good side of humankind.
  12. Don't apologize for feeling down or needing help. You had a major trauma, not surprisingly that you feel miserable. It doesn't matter how much worse anyone else' stroke is, any stroke is bad enough that you can justifiably mourn your losses. Give yourself time; I know that after more than 18 months I still don't *really* believe that I had a stroke, and I still get mad at myself for forgetting things and for getting tired easily. Cut yourself some slack, talk to people, both here (which is a wonderful place) and in real life. Enlist family, friends and colleagues to help, even if it's only little things -- my children know to remind me quite obsessively about anything that I need to do, because I have major memory issues. They started off skirting around it, but now seem to enjoy being my memory. Your daughter is a bit young for that :-), but there will be others helping to fill those gaps. The trick is to allow yourself enough "poor me" moments that you don't feel like you are being martyred, but not to make it a habit. You have a whole new circle of friends here, make use of it.
  13. FWIW, in Ontario your license is automatically revoked after any sort of brain injury (doctors, hospitals and optometrists have a duty to report to the MTO). Getting it back involves having visual fields checked. I have lost about 25% of my visual field (upper right quadrant), so I had to apply to the Ontario MTO for permission to be tested. They needed two sets of visual fields done at least 3 months apart. After a review, they allowed me to do a test, which consisted of an interview & office cognitive test by an OT, followed by a road test in a dual control car with a specially licensed examiner and the OT present. I was required to give a running commentary of what I was seeing, was aware of around me, what I was doing and planning to do. The whole thing lasted about an hour, left me exhausted but with a license. I would rather have this system than one where people can just get in a car and drive. If in any sort of doubt (or even if not in doubt), get an OT's opinion and get re-tested before you drive again. For everyone's sake!
  14. The elephant in the room: "now the wife wants to go". I'm not a psychiatric professional, have never played on on TV, but have seen a bunch of them in the last two years. Do you know why she wants to go? Do you talk? I would try to get her (or the two of you together) to talk to a professional as soon as possible. She may well be confused and upset and wants to get back to before your stroke. The sooner the better, before she paints herself into a corner. Is she at all involved with your rehabilitation? If not, try to get her to come along to rehab sessions (if you have them), get her to talk to your neurologist. If she understands the deficits and the prognosis, she'll know that you are not just goofing off, and will have more realistic expectations of the path forward. Does she have *any* idea at all about how messy divorce is? And in a situation like this, it will be even messier. Apart from anything else, her chances of getting any significant spousal support is probably about nil. Plus the kids will hate her for abandoning you when you are in need, and she will hate herself when it all sinks in. Once again, she should probably talk to a marriage counsellor, especially one with experience of traumatic brain injury or chronic illness. Not sure how you would find one, maybe your neurologist or family doc would be able to help find someone. I hope and pray that I am over-interpreting your comment, and will be horribly embarrassed. If not, I she will then make the correct decision (whatever that may be) for the entire family. paul
  15. Conceiving a baby is comparatively easy; there is AI and IVF if the two of you are unable to conceive naturally. You do *NOT* need a donor, you need post-natal help. Think about calling of family (both yours and hers), friends and the various aid services around (not sure what there is in the US, but there has be be something). If she is set on a third person, get some professional counselling BEFORE you are pushed into what could be a tricky journey. It might turn out to be a wonderful experience for all concerned, but I think that preparation is critical.