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Stroke Survivor - male
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Everything posted by PaulNash

  1. PaulNash

    James I like your wife's response :-).
  2. PaulNash

    I've done most of the cooking since before I was married. My wife hates cooking, but two of my kids enjoy it (provided they don't have to do it every day and don't have to clean up :-)). We've always tried to eat healthily, since my stroke we have been making and even bigger effort to stick with food that remembers where it came from. As much fresh veg and fruit as possible, little meat (preferably non-feedlot, even if that means very small portions). We're also trying to cut carbs, unless there are roast potatoes, in which case we pig out. When we were first married, we lived on 100 acres of bush, so were able to grow our own food, including milk (goats) and meat (sheep). The only thing that kept me in shape was clearing the lots to grow vegetables, chasing livestock and all the rest that comes with rural life.
  3. Maybe I should consider this. My emotions go very wobbly sometimes and my shrink has offered me various anti-depressants at times, but I guess that I'm a bit stupid (or stoic, or both) and prefer to not mess with my brain chemistry, given that it has had a major insult already from the stroke. I'm mostly scared that it will slow me down even more and make the deficits worse.
  4. PaulNash

    Hi Deigh No notification cards here that I know of. I have thought of making my own, but then I would probably wax lyrical and end up with a 15-page breakdown of what they can and cannot expect, which would rather defeat the object of the exercise. It's a great idea, though -- once they have finished reading the tome, I'll have worked out what to say :-). If I'm stuck, I try to just say "give me a moment to think about that", no explanation why, and it's usually accepted. My biggest problem is that my wife no longer accepts that, she just wants me to do a Hunter S Thompson if necessary and give her whatever I am thinking right now. Re: writing; my mother taught English at the local university and was an English language Nazi. So my siblings and I all ended up getting top marks for language. I've lost a big chunk of my vocabulary, which is probably not a bad thing. And complex grammatical constructs now evade me, as I forget how I started the particular sentence. This is all way way off topic.
  5. PaulNash

    Kelli, thanks for the spoons reference. I think I got the whole spoon thing from you (it was in these forums); it has helped me enormously and is also an easy way to reming family and friends (and myself!) that I can only do so much.
  6. PaulNash

    Credit where credit is due. Spoon theory is not mine, I learned about it on this very board. Just passing the idea along. There is far more detail and better explanations available from other sources; google "spoon theory" or search at the top of the page.
  7. PaulNash

    Thanks for the feedback. It's far far easier to give advice than to actually use it, unfortunately. The best that we can do is try. I regularly beat myself up for stupid mistakes, but try to circle back later to forgive myself, see what went wrong and try to figure out a strategy to avoid the issue next time. Which often creates new problems next time :-). Self-forgiveness is important, but can be difficult. I found that CBT helps. I went on a course at the local major hospital, about half the people had stroke/concussion. It mostly revolves around re-framing your self-image so as not to beat yourself up too much. It's a learned skill, and takes ongoing mindfulness (to track what you are feeling and why) and practice (to re-shape the why and so change the feelings). Does not always work, but helps a lot in real life. One of the best things for me has been "spoon theory". This is a bad description, you can find better ones if you search for them: Basically it is energy management; you start the day with a certain number of spoons (6 or 10). Each activity uses up a some spoons (in my case, going for a run uses 2 spoons, cooking a meal uses between 1 and 3 depending on the meal, grocery shopping uses 3, dinner with my in-laws uses 4). When you have used up all your spoons, that's it for the day. You can sometimes get more spoons by resting, but you have to budget spoons -- if we're having dinner with my sister-in-law's family, I won't do the grocery shopping that day. I have learned more about managing my new life by browsing old topics on the forums than from all the medics/paramedics/OTs. There is nothing quite like other peoples' lived experience.
  8. PaulNash

    I've spent the last 3 1/2 years trying to teach myself to at least give a message of "I hear you, I have to think about this, I'll respond as soon as I can". It's easier in email/online chat type conversations than face-to-face, probably more important face-to-face. Some people get annoyed, but in the end that is their problem. Not a lot that I can do to change them. I get it from my family when they are in a hurry/tired/anxious/whatever; at least we can sort it out between ourselves once tempers die down. Ultimately, it's all a matter of managing expectations (one's own and others')
  9. PaulNash

    Wonderful! Thank you, this made my day 🙂
  10. PaulNash

    Hullo Jwalt. I'm glad to meet you, sorry that it is under these circumstances. Sound like you are a very lucky man, both before the stroke (married to your high-school sweetheart) and post-stroke (could have been a lot worse). I hope that things keep improving, as these are early days. We're here to listen to your successes, understand your pain and give you a shoulder to cry on. I hope that we get more success that the other two :-). Emotional volatility and frustration are par for the course, I'm afraid. They get easer to deal with over time As goes getting over problems, I'd say practice, practice, practice. Don't push yourself too hard, watch out for fatigue. Be kind to yourself. Improvements may plateau, but then they start improving again; it goes on for years.
  11. PaulNash

    My heart goes out to you. You are having a horrible time because of your husband's medical condition; it's not your fault, it's not your stroke, you did not want this and you never signed up for it. My wife goes through this at times, albeit in a milder form. I don't have any words of wisdom, or anything that can fix the situation. From my own experience, from the other side of that barrier, he is not doing this on purpose. His brain is broken, and is trying to piece itself together. Your presence and support will help with that, but there is no guarantee how long it will take and what the result will look like. In the meantime, you have to look after yourself. Running is good, as is any exercise (I used to be a serious runner before my stroke, still push as hard as I can to deal with mood issues as a result of the stroke). Spend time away from the house and away from your husband with friends and family. See whether there is any sort of stroke support group in your area. Getting away from the situation and being with normal people is going to be really important. Part of my wife's coping mechanism was to immerse herself in her work (she's always been a type-A anyway); the balance of her time was spent trying to find a cure for me. The first strategy worked, the second, not so much :-). Things change. No-one can predict what will change for your husband. You may be able to coach him to change his ways (my wife managed to get me to organize my life after 60 years of chaos, to take notes and use a calendar, and to make polite and meaningless conversation in company, so anything is possible). My strongest advice, though, is to focus on your needs and make sure that you do whatever is necessary to nurture them. And stick with the exercise, it makes a world of difference.
  12. PaulNash

    Sometimes (when I'm feeling charitable) I think that they are trying to say something positive, and don't really know what to say. Other times (less charitable) I think that they are so caught up in their own world that they don't notice or forget.
  13. PaulNash

    >> that famous photograph of all the construction workers taking their lunchbreak on a steel girder over the Manhattan skyline can have her terrified! I can relate to that! I used to climb quite seriously when I was a _lot_ younger. Never felt uneasy while climbing, even on routes that other climbers had died on, but would get the heebie-jeebies looking at that very same photo. I still do. Strange how the mind works.
  14. PaulNash

    I understand how you feel. There is nothing quite like talking to the world and not getting a response. In face-to-face conversation it can be quite devastating. In forums like this, it is fairly normal. Not everyone feels that they have something to add, or is in a position to take the time to respond, or is able to gather their thoughts or strength at that moment. My stroke has taught me not to ascribe motives to people's actions. In company, I tend to be withdrawn and silent, because of some significant memory issues which make it difficult to track conversations. Before my stroke, I was always butting in, taking part, holding forth and so on. It took my wife a l_o_n_g time to internalize that I was being quiet, not because I was not listening or not interested, but becauseI could not keep the conversation in my head. My in-laws flip-flop between not thinking anything (too busy talking about people I don't know and will never meet) or thinking that I am pre-occupied. In business meetings, people think that I am thinking deep thoughts and/or judging them. All the same behaviour on my part, different interpretations. It took a while for me to get chatty here, and I like this space because I feel that I can contribute something useful (sometimes), and I can take my time composing my thoughts; I can follow my train of thought (usually) by reading what I have just written. I DO know how you feel about writing and not getting a response, but I am now used to long delays. They're just a symptom of members thinking about what to say, not ignoring you.
  15. PaulNash

    Hi Chris My heart goes out to you. I have seen the impact that my stroke has had on my wife and on our relationship. The good news is that, depending on the specifics of the stroke, things can change. After 3 1/2 years of being the patient to my wife's caregiver, being withdrawn and passive, doubting myself and waiting for others to make decisions and take the lead, I have started to force myself to occupy some of the space that I inhabited earlier. It's not easy to do, and even less easy to start. It took a massive kick in the *beep* to get me going, but I am grateful for that kick. I kick myself daily to keep showing up, and to keep moving (whether forward or sideways is moot). I don't know whether your husband is capable of significant change, and if so, what will motivate him. Or whether anything that you do can trigger or support that motivation. I can only hope and pray that he will wake up, so that you can both start living again. Until then, the least that we can offer you an understanding shoulder to cry on. Others may have brilliant ideas. PS: Don't underestimate the impact that the stroke has had on you, in many different and subtle ways. Try to care for yourself. PPS: 18 months is not a long time in stroke recovery. Some changes happen in days, some in weeks or months, and some take years. To use a threadbare cliche: "this is a marathon, not a sprint". If you're a runner, there are several more appropriate analogies.
  16. PaulNash

    Congratulations! I'm sure that sanity will prevail and you'll sort this out.
  17. PaulNash

    Congrats! Sounds like some serious progress being made there!
  18. PaulNash

    Looks gorgeous. If you ever head North to Canada, I'll hire you to do ours!
  19. PaulNash

    I found that when I moved to outpatient rehab, the practitioners had far more time to check on my progress, more structure to the treatment, and far far better advice. They also observed me closely, and picked up stuff that the hospital staff had not (left foot turning out, balance issues). The biggest difference was that they had a pile of compensatory strategies that they could drill me in. None for my specific cognitive impacts, but a lot for the physical side, which helped enormously. I agree with Heather, it gets boring but it is well worth keeping on. I tried to set myself personal challenges -- balance on the bosu for a few seconds longer, hearing what my left foot was doing on the treadmill rather than looking, and so on. All minor, and peripheral to the major deficits, but helped me to stay engaged and feel that I was progressing.
  20. PaulNash

    Hi Willis, welcome to the club. This is a great place to hang out, get some perspective, and find shoulders to cry on. There is also some very very good advice from people who have dealt with this for far longer than we have. My stroke was 3 1/2 years ago (ischemic), I'm still adjusting (and still seeing improvements).
  21. Good for you, taking the plunge. I'm glad that all went well in the end, even with the idiot drivers. My stroke has shown me just how amazing and helpful ordinary people can be. Yes, there are people who will look away and refuse to help, but I have been quite astonished since my stroke at the level of sympathy and help from strangers.
  22. PaulNash

    The cabinet looks great! My brain would just not cope with the simple mathematics to do this ... a blow both to my pocket and my dignity since making instant calculations and decisions is a norm in engineering! I hear you, and I feel your pain; this is something that I go through regularly. I think that it takes other engineers to know just how much things like this can shake our foundations. I feel your pain and frustration.
  23. PaulNash

    Wow! That's a pretty shitty thing to happen. I hope that the rehab can get back most or all of your affected function.
  24. I had a vertebral dissection three years and a few days back, left me with a quadrantanopia and a badly damaged memory. Also fatigue, low self-esteem, and the other usual suspects. I am lucky. I have a supportive wife, who has acted as my guide and advocate through the medical system, come up with DIY rehab plans, looked for help for deficits, and generally done everything that she could to help. However, elephant in the room is conversation. Because of the memory issues, I find it hard to follow a conversation, to in company I tend to site to one side, listen and nod politely, and people are really happy (because they mostly want to talk). However, in one-on-one situations (especially with my wife, and especially x2 when she is upset and need support), I just sit there are think "what should I say", "what would be appropriate here", and just block. This makes her even more upset, she sounds off at me, I try harder and am less and less able to compose a sentence, much less a conversation. I know that these sorts of things can be overcome, and one can develop strategies to respond appropriately or even start a conversation, but I have no idea where to turn. In a work context, I can discuss technical matters quite happily, albeit referring to my notes. It's the personal stuff, and ESPECIALLY with my wife, because of the social aspects and also because they are fare more emotionally laden than the mundane stuff. If anyone has ideas about how to get started, or pointers to any resources about how to get past this, I would love to hear them. I'm at my wits' end and despairing about this. paul
  25. PaulNash

    Interesting that you take carbamazepine. My wife has been on it for most of her life for epilepsy. Looks like a useful all-purpose drug :-). I'm really glad that you have something that works.