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  1. Today
  2. You got this Carol. There's lots of places still to go and things to do in them. So you do it differently you still do it! Enjoy -Heather
  3. On My Two Year Anniversary

    Some Brief Thoughts on the Second Anniversary of My Stroke Two years ago today, while going through security at SeaTac airport, I had a stroke – a brain bleed that in the majority of cases is not survivable. My left side was paralyzed and I remained in hospitals in the Seattle area for a month. I had to relearn how to walk, talk, chew, swallow, and do most of the things that make us normal. In the past two years I have worked hard, given up, cried, laughed, been angry, been grateful, learned (or learned to use) new swear words, and some days, just stayed in bed. I walk slowly and awkwardly, but I walk. My left hand doesn’t function fully, but I am figuring out new ways to do things. Overall I am grateful, but I expect the sadness and anger will never completely go away. Today we finalized a three week trip to Argentina and Chile, cruising around Cape Horn. We are not doing it the way we would have in the past, but we are going to our sixth continent! Life is good!
  4. Yesterday
  5. I'm relatively new to this stroke situation. Alot of leisure and NO activity. How does one adjust?
  6. If the caregivers supervisor has not been on-site to review your progress that means the supervisor is not informed as to the situation. We had a somewhat similar circumstance early in my recovery and my wife dealt with it in her 'your screwing with my husbands recovery' mode. Everyone gets paid by someone, even the supervisor. Go over their head and there will be a patient advocate or executive you can reach and go all medieval on them. Make them aware that the caregiver is fine but being restrained by the supervisor. My wife also found that posting a cultivated version of the story on facebook and other social sites usually got immediate results when they went directly into damage control mode. If they haven't performed actual testing on your ADL and walking skills then they are not operating in your best interest. Wishing you the best.
  7. Thanks everybody. They just finished titrating me up at 50mg increase every 2 weeks, so I need to give it some time. It hasn't done much to this point at any of the dosages.Which is pretty much in line with the clinical trials I read. For now I wait. I won't be surprised if he ends titrating me back off it. He did mention trying cymbalta but that has a wicked bad discontinuation syndrome (withdrawal) I have no desire to experience. From what I've read the pain is the lesser issue.
  8. I did that with my pain med. Low dose Elavil (anti-depressant) is used here -- Canada -- for CPS and arm/shoulder pain. I was supposed to take 10 mg. at bedtime. I couldn't sleep all night and got up the next day groggy/irritable -- real bad!! Yet it took the pain away completely. I didn't want to stop taking it but couldn't live with the after-effects. So I experimented. I took 1/2 a dose at noon and 1/2 at 6pm. Perfect!! Now I'm able to take the full dose at noon -- still pain-free and able to sleep very well, next day feeling fine and alert. I told doc what I did and he was fine with it -- even suggesting to other patients to try it that way. So, it paid off experimenting like that. You might want to consider it, Scott.
  9. Last week
  10. Nora, Do you receive Disability from Social Security? If so, you're in luck because they allow some therapy each year. All you need is a prescription from your doc, and you're good to go! If transportation is a problem, you can get in-home therapy. Becky
  11. Hollywood has done well this time. after faking the moon landing before.
  12. So glad you had the opportunity I can get the chance to watch it but I was at the public library and they had a little Eclipse party for the kids and just their excitement was just so much fun to watch
  13. Scott, Unfortunately, medication used to treat abnormal neural pathways affects the entire brain not just the pathway that it was prescribed. So, with these medications (Lamotrigine - Lamictal, Gapapentin - Neurotin), it affects the entire brain and you need to step up in the trial or step down in order to ween off. If you read the description of Lamotrigine, it is used to treat every thing from bipolar, pain management and seizures just like Gapapentin. My Neurologist explained that it was a calcium blocker. I found this lecture to be useful to understand some basic biochemistry and how neurotransmitters work. Lamitical is used to slow down this activity. http://neuroscience.uth.tmc.edu/s1/chapter05.html I was on a trial of Lamictal for over 1 year but I switched doctors who prescribed Gabapentin as a treatment to nystagmus and vertigo but it has sided affects at full prescription making night time poor but found sweet spot at half dosage. Have you tried lower dosages (you need to step down)? For trials, I also recommend keeping a journal. These medications can affect others things which may have not noticed. Good luck to you. I do not live with central pain but chronic vertigo. I hope that you find the right combination that works for you.
  14. i should explain. this caregiver has been with me for at least a year, and she is good in all respects but that. she wanted me to walk, too, and had been walking me on the hemi informally. but her supervisor told her to stop when she said no when i wanted the gaitbelt held. now i'm up a creek with no paddle because i need to learn how to walk again, but she was the only one who would walk with me on the hemi. now she won't again and i'm afraid of slipping back with no walking practice.
  15. You might want to do this immediately because SSDI takes 6 months to be approved.
  16. I was wondering, the other day, where you've been. Almost PM'ed you. Glad to hear from you albeit not so good news. Hope doc keeps trying to solve this dilemma for you, and you find relief soon.
  17. Sorry Donna, Not a med I'm familiar with. I use Lexapro as my Emotional Lability med. It's an SSRI. This class of meds is known to have effects of nausea etc. particularly early on in taking them as there are serotonin receptors in the stomach as well as the brain. But you also can't start stop taking them suddenly and you need to be on them long enough to build a base level before they work. Of course, if Nuedexta is a different class of drug this may not apply. But be careful and talk to your prescribing doctor about it. I so get why you don't want to give up, I could not manage without the drugs, but there has to be an option that doesn't have this side effect for you.
  18. Ed, Granted, your plate is rather full right now, but you can do this! You will have to make some changes in your life, though, and I'm sure that you won't like some of them,and neither will your kids, if the plan is for them to stay with you. I touched on this briefly in my earlier post, but, please do consider applying for Disability. It will give you an income, which may be important if your wife works, and is taking her contribution with her. Plus, after you have been disabled for 2 yrs., you will be eligible for Medicare Insurance, which you still pay for, but it can be hundreds of dollars less than Private per year. While you're waiting on Medicare to kick in, you can apply for Medicaid. It is income-dependent, unlike SSI, which is determined by how much you've put in the system.But, you can't be denied based on income alone. Medicaid, you can be denied. But, if you meet their requirements, you can apply for an aide to come in to your home for whatever amount of time you qualify for, and help you with caregiving or housekeeping needs. Going by your age alone, I'm guessing that your children are old enough to be somewhat independent, and can do most things on their own. Like making sandwiches or getting a bowl of cereal; using the microwave; bathing, etc. I'm not suggesting that you let them fend for themselves in all things, just saying that if they're older, their care will be easier. Make a list of things you need help with, and divvy up chores. I know that this is easier said than done. I also know that none of this may work for you, but you can come up with your own system that works for you. Good luck, Becky
  19. I took Bextra for about 6 months. I had no side-effects but like Lin said it may interact with meds you're already on. it felt good to retake control of my emotions again. My PBA has almost totally just faded away over the years. Meds are not the only way to manage PBA. Check out my web page about it.
  20. Total Eclipse

    My son took me to science center to watch live stream from Nasa and it was awesome to see the total eclipse, another awesome magnificient thing
  21. Welcome back, buddy! I've been wondering what happened to you. Having a stroke sucks! Having a stroke and CPS sucks times 1000!
  22. Lissa, I have dysarthria from my stroke. This means that I talk kinda strange, and that I may be hard to understand at times. Just after my stroke, this was very hard and confusing to deal with because, in my head, what I heard was my sounding normal, and I had no idea that what I heard in my head was not what came out of my mouth. I had to learn to ignore that "voice" which "said" my thoughts, and listen to what came out of my mouth. Sound confusing? It was. What it boiled down to was control. I had no control over my speech, and, if anyone was ever to understand me, I had to get back that control. Your husband may be experiencing similar with his emotions: Due to his stroke, he may have no control over his emotions, or how he expresses them. He may not even know how he sounds, or comes across to you. If you really don't want to separate, but don't feel as if you have a choice, you may want to talk to his neurologist, and see if he can tell you how much in control of his behavior your husband is, and if he has any suggestions. You may want to ask him if he knows of a neuro-psychiatrist in the area. Neuro- psychs are uniquely qualified to treat behavior that's caused by neurological problems, such as a stroke. He will also know if there are any meds. available that will help him. Good luck, Becky
  23. In answer to your question, Lin, I'd have to say that we may be behind the Canadians, but we're definitely behind the Aussies. Most of what I've learned about strokes, I learned right here, or thru my own research. Becky
  24. Thanks Becky I work for myself so that's not a problem, the family is . I have 3 children and a wife and that's it for family and now the wife wants to go so that's why i'm going crazy. I know i'm asking for a lot but what else do I do.
  25. you are a good person and truly a friend of dan and he would likely tell you so if he could. we cannot truly understand what happens to a person with a severe disturbance that a stroke can cause. I think that you being there with him some part of him will appreciate. my best wishes for you nancy! david
  26. I do hope that you can get a little relief from your pain. and also as pam has said I do like your witty humor! david
  27. Hi Lin, it depends on what the problem is. Sometimes when a muscle doesn't have good signal connection it goes into protective mode and the muscle turns on all the time (this is what spacticity is) If the muscle remains contracted for very long periods it becomes shortened. In this case no amount of "work" is going to get it functional as before you can do anything else you have to turn it off and make it long enough. Botox and stretching are usually tried first. If Botox doesn't give enough "space" to work on function then surgery to lengthen the muscle can be done. Mostly people get surgery to take a limb out of a locked position to a more functional one. You then need to start again with learning to connect the muscles properly and use them so that you don't go back where you were before surgery. So I've had surgery to get my leg more functional but its not needed (and would not help) on my arm as I still have full range of motion in most of the muscles, they just aren't well connected to my brain and are starting to attrophy, so even where I have some connection I have no usable strength.
  28. "...and the beat goes on"- not exactly what these words meant originally, but seem appropriate. Scott, more than once you have made me glad that CPS missed me. That's one stroke effect that I don't have. I'm so sorry that you and Pam have to deal with this. Let's hope that your doc finds his magic wand soon... Becky
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