Stroke Survivor - female
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About becky1

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    Senior Mentor
  • Birthday 08/27/1956

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  1. 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
  2. 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
  3. 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
  4. 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
  5. "...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
  6. You said it all, right there. I think that one of things that makes it so hard is all of the uncertainty that surrounds it. Almost any question that begins with "When..." can best be answered by saying, "I don't know." Everyone's stroke is different, and,so, it follows that recovery times v ary. We do know that recovery takes a long time, much longer than it should, in our opinion. And most people won't completely recover everything. There may be some deficits from your stroke that just go away on their own. The nystagmus in my rt. eye (bouncey eye) went away at 4 yrs. post, but I still have it in my left one at 10 yrs. post. I have dizziness/balance issues like you do. But I am much improved than what I was like in the beginning of my recovery. I agree with Heather, that you may have gone back to work too soon.Your work sounds kinda risky even for a person without balance issues, but particularly so for you because you do have balance problems. Can you take more time off, or work fewer hours per week so that you can gradually ease back in to a full week over time? Have you thought about Disability? Good luck in your recovery journey, and Welcome to Strokenet! Post any questions you may have here, and we'll try to help you. Becky
  7. If that was me, I would have to put the serving bowl on the table, beside my plate, and then get my food with my good hand. Becky
  8. Lin, With your skills communicating, your knowledge, and your experiences, you are a "natural" for this kind of support, and I don't think that you have anything to worry about. Becky
  9. Nora, It has b en my experience that whenever you're dealing with an agency, they prefer that you go up the chain of command, so, the first thing that you're probably going to b e asked if you complain to this person's supervisor, is whether you ever talked to the caregiver about your concerns, and her responses. So, have your talk with her now, and get it over with before going to anyone supervising her.Tell her that you want to work your differences out so that you 2 can work together. Let her say whatever she wants to say, without arguing with her, or getting offended. Take notes. Tell her at the end of the discussion that you will give it 2 wks., and if you still can't work together, you will look for another caregiver, and she can find another client. Tell your fam xcily first what's going on, and what you plan to do, so that they can be forewarned in case you need another caregiver.Anyone helping you recover after a stroke should be someone you can trust, even if you don't like them. Good luck. Becky
  10. As they say, "You can lead a horse to water, but you can't make him drink." Sounds like John in a nutshell when it comes to therapy. And, you know, that may be all right. Because I bet that there's one characteristic that most, if not all, stroke survivors have in common, and that is stubbornness. Being stubborn may help us, it may hurt us , but you have to be stubborn in order for therapy to be of any benefit. That's because therapy can be so very hard, that only those who refuse to give up are the ones who see any gains. I'm not saying that stubbornness is all that one needs, as there are lots of things needed, and no matter how stubborn you are, there are skills that will never come back. How do you know the difference? You don't. That's just it-you have to be stubborn, and not give up in order to find out. It sounds like John has stubbornness, and it may serve him well in this situation. I really wish that while John is working on himself, you would work on you. You deserve it. Go to the clubhouse, after all, you all are paying for it, why not take advantage of it? Maybe be re-evaluated by a psychologist to find out if you're on the best med for you. Best, Becky
  11. Ina, I just saw this topic tonight, and now I don't know where to start. There's so much here to think about. First, Welcome to Strokenet! I think you'll like it here. We aren't doctors, or in any way medically affiliated. What we do have, caregivers and stroke survivors alike, is a lot of experiences. Chances are that any question you may have, there's someone here who has "been there, done that". Please try our caregiver's chat, as our caregivers are a wealth of knowledge, and will gladly try to help you with any concerns you may have. I want to thank you, and commend you and your husband ,for being First Responders at 911. I'm sure that what we saw at home on TV was a very watered- down version of what it was really like. I'm not surprised at all that you acquired PTSD from the experience. What I am surprised about is that given all that you have been through-911, congestive heart failure, your husband's stroke- and you're not on an anti-depressent. I know that you said that you have meds for anxiety, but they won't help depression, not like a med designed to treat depression would. It might be a good idea for you to be evaluated by a psychologist to determine, if, given the other meds you're taking, you're on the right med for you, and if you need a med for depression. Both depressed people and stroke survivors can benefit greatly from exercise, so here's my idea: Do you have a YMCA near you? Can you call them and see if they have a hydrotherapy class for seniors, or water aerobics, anything like that? Usually, these classes are gentle enough that even handicapped people can keep up. While John is in his class, maybe there's one you can take, or another pool you can use. Do you know if there is a "Silver Sneakers", or similar, near you? I was thinking that if there's no one who can watch John, maybe you can pay someone to watch him for an hr or 2 every week while you go to your "class". Can you pay someone to come to your home, and do some housekeeping chores, while you run errands, have "me" time, etc.? Good luck, Becky
  12. So glad you're seeing progress, which is a suggestion of more progress to come if you "keep at it". Becky
  13. i WISH THEY WOULD COME UP WITH A DRUG FOR THIS THAT DOES NOT CAUSE SLEEPINESS. I take Baclofen every night-a low dose of 10 mgs., but I'm still sleepy the next day. i'M SUPPOSED TO TAKE ANOTHER 10 MGS. IN THE AM. But, seeing how sleepy it made me, I decided to add the AM pill only after I was used to it enough that my PM pill's effect on me wasn't so strong. That was a few months ago. The single pill a day helps a lot, but I STILL HAVE A TROUBLING AMOUNT OF TONE AND SPASTICITY. Botox is out of the question, and this new med has the same side effects. What does everyone else think? Have you found something that works without the side effects? Becky
  14. That "stiffening up" is probably tone. There are exercises for it, muscle relaxers sometimes help, and Botox. Some people find relief by using electro-stimulation ( a tens unit) on it. One of the best things that you can do for it is to move affected areas around periodically to keep them from getting so stiff that they become painful to move. just doing general exercises or stretches may help some, but you want to target specific areas that bother you. Remember doing ROM exercises? Try doing those on bothersome areas several times a day. Or just move affected areas around every way that you can. These toned areas of your body are often cold-sensitive. I was reminded of this recently when I was shopping on-line and saw wool socks for sale. I'm not usually an impulse-shopper, but those sounded so warm, I just bought them , without really thinking about it. My feet and hands fall victim to the cold first. But, your reaction may be entirely different. BECKY
  15. Misty, I so understand what you're saying.My mother, a stroke survivor, was in an Assisted Living center; my father, in a nursing home; and my Grandmother, in Assisted Living for Alzheimer's at same time, and I was the closest relative for all 3, and POA for both parents.I lived in NC at the time. My brother, in Colorado. I bought my first cell phone during this time because my job involved a lot of road work. I wasn't stationary, and needed a phone in case of an emergency. Plus, I was constantly on the phone it seems. There was always something going on with one of them. I needed a phone. The worst was having to make decisions on my own, hoping that the other family would agree when I told therm.My heart goes out to you. Please remember to take care of yourself. HUGS, Becky