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maree

Stroke Survivor - female
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About maree

  • Rank
    New Member
  • Birthday 11/14/1957

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  • Stroke Anniversary (first stroke)
    04-19-1996
  • How did you find us?
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  • First Name
    Maree
  • State
    Victoria
  • Country
    Australia

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  1. Happy Anniversary maree!

  2. Happy Anniversary maree!

  3. Happy Birthday maree!

  4. Ironically, I discovered after I came home from rehab that my bladder control was better than it had ever been - we used to joke that the surgeons had given me a new bladder, as well as the brain fixes. I fixed that, though, by taking a "natural" product that was supposed to fix cramps (which was NOT what I needed), which left me having to race to the bathroom as soon as i felt the need. Baclofen made the problem worse, and even several years later, i still have not returned to the wonderful control i came home from hospital with. Apparently the neurotransmitter Vassopressin can help with control, and I did buy a nasal spray of it, and it does work, BUT, if you stop using it, the incontinence seems to come back, temporarily twice as bad, like the urine that you did not pass whilst on the med, was just being stored somewhere, waiting to come out. I stopped using it because, if I remember rightly, it gave me a headache (maybe dehydration) and I did not want to be on it all the time, and certainly did not appreciate the nuisance of the let down after stopping its' use. This is a prescription med, and, at least here in Australia it is quite expensive, and I got a couple of packs from the Anti Aging website, even with freight it was not as costly:-- <http://www.antiaging-systems.com/52-desmopressin> I asked my neurologist and he said it was worth trying, but I did not have as severe a problem as you.
  5. Happy Birthday maree!

  6. maree

    Leah, I am so sorry to read that, on top of the stroke, you lost your husband. That would make life difficult for you if you live alone. I would find life impossible, and VERY lonely if I was not living with my ex partner/carer. Losing close friends and workmates makes life so lonely, going out talking to the neighbours is just superficial social contact, rather like talking to strangers in the supermarket, it just distracts me from the loneliness, it does not fix it. I note that you say you do not get up till somewhere between 9.00am and 10.00am. I used to stay in bed till after that time, but i have found that if I make sure that I do get up by 9.00am, NO later, then I am not quite as tired during the day, probably something to do with the circadian rhythm. The problem with that is that there is more day to fill in, with nothing meaningful to do. I probably lie down to go to sleep between 11.00pm and 12.00pm, which I want to keep, since that was the time I used to go to bed before the stroke (if I was not working the evening shift) and that suited my brain and body.
  7. maree

    Hi Leah, I had a stroke in the third left ventricle, which, I was told is part of the brain stem. I was tired from the moment I awoke from the six week coma - my first words were 'I'm so tired" It has not changed in the sixteen years since the stroke, and I have spent much time and money searching for a cure. So called specialists just tell me that it is a common symptom after a stroke, and here try some antidepressants and, it will help if you "accept" that your life has "changed". And the usual, "being depressed can cause tiredness, you know" Like being tired all the time is not depressing? And, unfortunately, I am 54, now, so they like to tell me that I am hitting menopause and that too can cause tiredness. The Provigil will probably help, I used Modavigil for a short while, and it felt so wonderful to be wide awake and alert, and not dragging myself around...until I found that after taking the Modavigil for 11 days straight, I had gained 7 pound. So I stopped using it. After all this time, the fatigue has slightly (only slightly) improved, in that I can go a whole day, and not have to go and lie down, but when i wake up in the morning, all I want to do is roll over and go back to sleep. And it is hard work forcing myself to get up and start the getting ready to go out process. I remember, once, if I realized that I had woken up late, i could leap out of bed and run to catch up the time that I had lost, so that I could get to work on time. Now, I just drag myself out of bed, and do the survival things that I have to do to get myself to work (the rare times that I have a job), and leave the tasks that i normally am responsible for (walking the dog, making the bed, tidying the kitchen) to my partner who works from home. I continually say that it is the tiredness that is my greatest disability, not the dud hand, not that I walk with a limp, but being tired all the time makes it impossible to do anything worthwhile or enjoyable. As I said I have done so much research and spent so much time and money trying to resolve the fatigue, and still do not have anything that gives me back a zest for life. My latest research suggest that the tiredness is actually caused by adrenal fatigue, I exhibit exactly the same symptoms as someone with adrenal fatigue, but I cannot find a doctor who will treat me for this because i do not exhibit what they consider the gold standard for adrenal fatigue - low blood pressure, mine is no longer high, but it is not low, or weight loss, I struggle to lose weight. One offered to prescribe the treatment (steroids) to just try them, but since this would make me gain weight, and could possibly awaken a genetic tendency for diabetes, I was reluctant to do so. So I cannot give you any hints or hope. I currently take High Vig, (a vitamin supplement which contain guarana, ginseng vit B, and a whole host of other stimulating herbs), if i need to be awake and alert for a period of time, and it does get me through, not like I used to be before the stroke, but better than I am now, without it. But the problem with guarana is that it causes vision problems, and I have, recently noticed blurry vision a couple of times, so I have stopped taking it as often as I used to do. You can get this product over the NET, I buy it at the supermarket (in Austraila) So please if you discover something that does help, I would be very grateful to hear about it.
  8. maree

    Hi Leah, I had a stroke in the third left ventricle, which, I was told is part of the brain stem. I was tired from the moment I awoke from the six week coma - my first words were 'I'm so tired" It has not changed in the sixteen years since the stroke, and I have spent much time and money searching for a cure. So called specialists just tell me that it is a common symptom after a stroke, and here try some antidepressants and, it will help if you "accept" that your life has "changed". And the usual, "being depressed can cause tiredness, you know" Like being tired all the time is not depressing? And, unfortunately, I am 54, now, so they like to tell me that I am hitting menopause and that too can cause tiredness. The Provigil will probably help, I used Modavigil for a short while, and it felt so wonderful to be wide awake and alert, and not dragging myself around...until I found that after taking the Modavigil for 11 days straight, I had gained 7 pound. So I stopped using it. After all this time, the fatigue has slightly (only slightly) improved, in that I can go a whole day, and not have to go and lie down, but when i wake up in the morning, all I want to do is roll over and go back to sleep. And it is hard work forcing myself to get up and start the getting ready to go out process. I remember, once, if I realized that I had woken up late, i could leap out of bed and run to catch up the time that I had lost, so that I could get to work on time. Now, I just drag myself out of bed, and do the survival things that I have to do to get myself to work (the rare times that I have a job), and leave the tasks that i normally am responsible for (walking the dog, making the bed, tidying the kitchen) to my partner who works from home. I continually say that it is the tiredness that is my greatest disability, not the dud hand, not that I walk with a limp, but being tired all the time makes it impossible to do anything worthwhile or enjoyable. As I said I have done so much research and spent so much time and money trying to resolve the fatigue, and still do not have anything that gives me back a zest for life. My latest research suggest that the tiredness is actually caused by adrenal fatigue, I exhibit exactly the same symptoms as someone with adrenal fatigue, but I cannot find a doctor who will treat me for this because i do not exhibit what they consider the gold standard for adrenal fatigue - low blood pressure, mine is no longer high, but it is not low, or weight loss, I struggle to lose weight. One offered to prescribe the treatment (steroids) but since this would make me gain weight, and could possibly awaken a genetic tendency for diabetes, I was reluctant to just try them. So I cannot give you any hints or hope. I currently take High Vig, (a vitamin supplement which contain guarana, ginseng vit B, and a whole host of other stimulating herbs), if i need to be awake and alert for a period of time, and it does get me through, not like I used to be before the stroke, but better than I am now, without it. But the problem with guarana is that it causes vision problems, and I have, recently noticed blurry vision a couple of times, so I have stopped taking it as often as I used to do. So please if you discover something that does help, I would be very grateful to hear about it.
  9. maree

    I know that people make plans...then, after they have done so, they say - what about Maree? Maree, of course, cannot do whatever it is, (or they do not want to interrupt their enjoyment by helping me) so they, then have to make plans for me, exclusively, which is annoying for them, and embarrassing for me. My partner solves the problem by leaving me in the car, or on a seat, whatever. Why do they not see, that I would just be glad to go along and watch them rock climbing, go-cart racing, whatever, rather than being left behind as an after thought
  10. maree

    Quote: I saw a figure once....85% of existing relationships get messed up by Stroke...At first I doubted it....I do no longer... Whilst in rehab,I was told that if a woman becomes disabled then the likelihood of her partner staying is something like 2%. I must have lucked out because my partner is still around, BUT I do not know for how much longer. We were together for only 3 wonderful years before the stroke, and it has been 15 miserable years since the stroke. Three years does not repay for 15 years, and it is patently obvious that he no longer considers me a viable life partner. He got divorced from his first wife about a year ago, and would not have told me except that I saw the paperwork. He was the only man who I had ever wanted to spend the rest of my life with, and it took me 20 years to find him. 20 years from now puts me at 75, too old to start again. Admittedly I do not know if I would want to marry him, now, since I know that I am no longer good enough for him, and 16 years before I met him, I said No to a proposal because I did not consider the guy good enough for me. If I would not settle for second best, why should my partner have to. I have often wondered how I would have acted had the tables been turned, and I suspect that, in the end, I too would have left. So he is a better person than me, at this moment in time
  11. maree

    I was 38 when I had the stroke, I was in my prime, life was everything I had wanted it to be (well almost) I was the person that I had always wanted to be. Stroke changed all that. I lost all the friends that I had at the time. Most came to visit me in hospital whilst I was in the coma (they did not have to try to make conversation then, did not have to hang around longer than a few minutes) and once I came home? Did not see any of them for dust. I had to drive across town to see them, which I did because I wanted to renew the friendship. That was useless, they had got on with their lives without me, filled the small gap that I had left and taking me, disabled, unemployed, fat and poor, back into their lives would have meant to much work for them, too much of an upheaval. So I am left with a partner who does not really want me in his life, and the neighbours as acquaintances. I joined a stroke support group about 2 years after the stroke, but at 40, with most of them in the seventies or eighties, I did not want them to be my social group for the rest of my life - hanging around with a bunch of old, disabled, unemployed people with nothing to talk about but being sick, or their grandchildren. So my social life has deteriorated to just seeing the neighbours two or three times a week, and talking to people in the same situation as myself on the Net. And, of course the physiotherapy and medical appointments, which, sadly, I look forward to. As the girl wrote in Banghok Hilton "Life Sux"
  12. I went back to work after the stoke -- for someone for whom I had worked 10 years before the stroke. He remembered me as this wonderful talented bookkeeper, and was thrilled to get me back again. Wrong. I knew that I was slower because I cannot move as quickly and dexterously, AND with the memory loss, my thinking skills are no where near as good as they were. BUT, I needed a job, and having applied for several other jobs and not even received the "thank you but" letters, I thought this might just be my chance to get back into the workforce, by doing a job that I had done for 15 years before the stroke.I did not like the job, and had worked hard to escape that particular career before the stroke, but anything is better than just sitting around and moping at home, so I went back to work. I proved that I am no longer a capable and competent employee, and after four weeks he eventually had to fire me, he showing no end of embarrassment when he did so. So, with that, I lost a great reference, and the high regard that he once had for me. Sure the income over the time was a great bonus, but, emotionally, I lost more than I earned, both in friendship, and self esteem. I found the fatigue was the hardest thing to beat. I suspect that he one day found me asleep at my desk. Trying to do a good job whilst you are using all your conscious mind to push back fatigue makes it very difficult to work effectively So think long and hard about going back into a job where you once excelled. And yes, do tell those who might offer you employment about your situation, though it would be pretty unlikely that they do not already know, someone's bad luck story gets around very quickly.
  13. Ironically, since the stroke, I do not feel the cold as severely as I used to. Which is a great boon to my partner as I am stuck at home all day, and would have the heater on, instead of being at a job and using the employer's climate control. I assumed that it was because I gained 3 stone after the stroke, but, I had the stroke when I was 38, and am now 54, so it may well be menopause Regardless, I often take a long time to figure out what to wear for the day, because i have NO PREVIOUS EXPERIENCE surviving a 28degC day as a person who does not feel the cold. Unfortunately my feet and hands are still regularly cold, presumably because I am not active, but more like my circulation does not work properly (but then, it never did)
  14. maree

    I believe the problem is that other people cannot even begin to comprehend what it is like to be a competent normal person, one day, then permanently disabled the next. They cannot identify with you what it is like to wake up in the morning and know that you will have to limp around the house doing the stuff you used to do easily and competently, but now doing poorly and slowly with difficulty. And they are embarrassed because they know that they cannot say anything that will make it better. No, "give it time" will improve the disability, no hard work makes it any better, it is permanent, which is the greatest fear of all humans. Certainly both I, and they are happier when I have a "genuine" health concern, like a broken arm, a cold, whatever, they can then identify with me and offer sympathy, which makes them feel good, and makes me feel a little less of an outsider And the worst thing is that they have no respect for a disabled (and therefore retarded) person, so they do not want to have anything to do with you, it is embarrassing to have to relate normally to a person who is retarded, since that then, could identify THEM as retarded also. My feeling is that I no longer produce oxytocin (the trust hormone) and that is why people do not want to have anything to do with me. My partner is a very popular man, obviously producing a lot of oxytocin, and I have reached the stage wherein I do not wish to go out socially with him, because his presence overrides mine, people do not wish to converse with me, when he is around. Unfortunately I NEED people interaction, because life is so empty and lonely, now, anyway, and that people do not want to have anything to do with me makes life that much more lonely because I no longer have the ability to get out there and join in. I have strayed from what I was planning to say, I am afraid. To me, it is the lack of understanding (maybe they do not want to understand) which then leads to lack of respect, and my own lack of oxytocin which makes me socially repellant
  15. maree

    This is an old topic, but I have only just read it so somebody else may just read it after me. i had botox in my calf. I had always enjoyed walking, and always walked briskly and tirelessly, the stroke put an end to that. The botox did help me, a little, but I still had to work like hell to try to recover my style and speed. I can certainly walk further and faster than I used to do, but I still have an obvious limp because strangers who do not know that I have had a stroke, comment on it. I, personally, rarely notice it. I had my first injections in my calf about 6.5 years after the stroke, then another lot about 5 months after that, with the second lot doing absolutely nothing, though I think that was because the doctor who applied it did not do it properly, he told me that he had used an old muscle stimulator to show him where to place the injections, after I complained about how painful it was Regardless, the first session was incredible. I remember walking out of the doctors rooms, and thinking WOW how wonderful it felt to walk normally, and that everybody I passed must be looking at me and thinking how well I walked. As I said, I obviously walk with a limp, but I feel that i walk relatively normally, except when i look critically at myself. And I do know that I am not constantly striking the ground with my heel first because if I do not have well fitting shoes, i will often tend to "walk out" of the shoe. So, unfortunately I have to always wear "sensible" shoes. If I concentrate I feel that I am walking well, with my heel striking the ground first, but if I do not concentrate, then I probably land on the ball of my foot. It was really worthwhile having the botox, because I once loved to walk with my partner, I do not find it so enjoyable, now, but, that, really is mostly because of the ongoing fatigue. My arm and hand were never really tightly contracted, thanks to my mother coming into the hospital every day when I was in the coma and stretching them, manually. A friend who did have severe arm and hand contracture had botox and was thrilled with the results. She was lucky enough to get her treatment under her physicians clinical trial. In Australia, botox is not subsidised, so I paid for my treatments in full. Probably the best money I have spent on a stroke treatment.
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