Stroke Survivor - female
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About heathber

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    Senior Mentor
  • Birthday 05/23/1965

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  1. 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
  2. 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.
  3. 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.
  4. That sounds really good. He probably was proving it to himself as well as you. Just remind him sometimes he has to make haste slowly. Boy do I hate it when the therapists say that but they are right. The trouble with pushing limits is that when it all goes pear shaped you can be really screwed. and walking quickly can be a real risk factor. He's better off aiming for distance at a controlled pace he can maintain. If he's going on this holiday he doesn't have time for a fall now.
  5. Hi Lin I agree with Becky. You'll be great at this. If the person you're supporting becomes your friend then that's a win for both of you. Sometimes the person involved just needs some hope, and meeting someone else whose been there can make a difference. A family friend asked me to spend some time with his mother who'd had stroke. I had a 30 minute chat with her and apparently that was enough to give her the will to work on recovery where she'd been giving up. If anything I had a longer talk with our friend about being careful about maintaining his Mum's sense of control and independence. Which I think was just as important as meeting Irene herself. If you concentrate on educating the survivor and helping them to have the words/ways to explain to their families themselves then that's also a win. Even if it's not hospital policy what's to stop you offering to help the survivor with talking to their family? Here part of stroke rehab planning and goal setting is family meetings with survivor, therapists and family all together. If your hospital isn't already doing it, maybe suggest this I understand that it is considered best practice.
  6. Or you hold the bowl tucked against your ribs in the crook of the elbow(doesn't work unless you are standing). But the safest for everyone including the bowl is as Becky said don't lift the serving dish, leave it on the table. and get some tongs rather than trying to use your spoon or fork.
  7. Hi again Ina (it always feels so funny calling someone other than my Mum Ina, I don't think I've "met" another one before, other than my great Aunt who usually used "Nell") I know you know this but that small stuff is actually so hard to let go of when you first start. We've been so used to doing it and not noticing. but it is now those few straws that will push you over the edge. So that conscience decision to ignore them may be needed for a while. I'm sure John's walking will have improved by October. But do tell his therapists about your plans so that they can tailor his program so he's as ready as possible for his trip. -Heather
  8. Another couple of aphorisms that are worth remembering "don't sweat the small stuff" "pick your battles" i.e. save your energy for the things worth fighting for, and decide what really matters to you. Personally I love the cruise ships, and they are perfect for a strokee's holiday other than that everything you want is always at the other end of the ship. you can end up walking miles. Take a decent sized tote bag everywhere. Staff are always happy to help with "odd" things like cutting up food for you or opening bottles (things that still defeat me out of home where I have more "tools"). I do recommend paying the extra for access to the thermal spa area that will be linked to the gym or beauty salon. It's quiet, warm and calm you get access to a disabled friendly hot tub that's not full of people, steam rooms etc. It won't help your tan and there's no bar but I don't want/miss either of those. A short cruise sounds like the perfect thing for you. Have fun.
  9. One thing to remember with this is that improvement is continuing even if you can't see it yet. Here's how my Physio explained it when I moaned one day about not being able to move my foot. He could see/feel that the right muscle was activating but that wasn't enough for me. to lift your foot takes force x, at the moment your muscle can only generate force x-n. until that muscle can generate x or more "nothing" is going to happen when you activate it, So you do your exercises and that muscle/connection gets a little bit stronger each time. It'll feel like all of a sudden it works, but actually it's been getting fractionally closer each time you try but until you reach that minimum level "nothing" happens. So don't give up. You have to keep working even when you feel like you're getting nothing for all the effort. In my case I now have both neural impairment and muscle wastage to counter so even once I start to get the connections firing I've got long waits (work times) before I have anything usable and it's very easy to get discouraged.
  10. Hi Penn, I've been living alone with left hand effectively useless for 7 years now. There are ways for most ADLs including cooking, you just need to learn them or get the aids that work for you. e.g. never travel without a pair of scissors and a non slip mat. Happy to help with any specific questions. A few things I've chosen to outsource, mainly for speed/ease. So what are your main bugbears? There are plenty here who will have practical advice. One thing you do need to be ready for is one handed living does include compromises, few things done one handed are as "pretty" as you would like/are used to. -Heather
  11. Oh Ina, HUGS You didn't ask at the time so the help evaporated as people decided they were not needed. It can be the hardest part of this, the way people you thought would stick drift off. Maybe make a list of those people who offered then and make a deliberate effort to get them to do something now. Asking for help is SO HARD when you have been the helper for so long. But most people will be happy to help particularly if asked to do something specific. Even if it's things you could do yourself, like pick up the groceries you've ordered. You don't need to ask for long term commitments. You'll be surprised at how much pressure they can take off the situation if you are willing to let them. It does sound like you are depressed. As I'm sure you know depression leads to exhaustion and exhaustion leads to depression. Have you explained to John how hard it is on you that he doesn't put the dishes away or at least into the sink when you are out. It is a tiny thing but it would help a great deal. I know sometimes those few extra steps are just beyond us, but does he know to "try" to pick up after himself before you get back? How about getting a cleaner in for an hour or 2 a week? There's a lot to be said for outsourcing the tasks that get you down. Yes it's never done the way you would do it yourself but it's usually worth the compromise. Yes you can't get those 9 months back. I had something very similar happen here so it's not just where you are. Only I lost nearly 3 years of gait therapy that would have made a huge difference if I'd know the right way to ask for it. Boy was I p----d when I found out my health insurance pays for 150 outpatient PT/OT sessions per year if it's from the "right" hospital and ordered by the "right" specialist. But you can't change it to so you take a deep breath and move forward. I've been using those sessions since I found this out and I've made great gains through them. Having one arm/hand that is effectively useless is now normal for me. Tell John one handed living can be done and enjoyed. While I'd love more I'm not wasting energy on what can't be changed, and doing what can be done both in terms of recovering movement and doing things I enjoy differently. That's part of the positive living stuff that Lin was trying to explain to you. In many ways being happy is a choice. And while that bad therapy may have reduced the therapists expectations, what I do know is that there is no rule or expectation for stroke recovery that has not been broken by someone and while the early gains are the easiest to get there is no real limit/end to stroke recovery so long as you continue to work on it. The brain a miraculous thing but it needs guidance and regular prompting to make changes. Hang in there and complaining is good until you define the problem you can't change it, just try not to let that mindset become your normal or it will take over your life. The trouble is it makes complete sense most of us have been in that head space. Love and Hugs -Heather
  12. Time to change agency or at least talk to your agency case manager who is assigning the caregiver. Have you told your family what is happening?
  13. Hi Ed, First welcome to the site so sorry you have a reason to find us. But there are lots of great people here who will be able to help with your questions or at least listen when you need to rant or moan, we've all been there (or a close variation of it). Hang in there. yes this thing is tough but you're just getting started on your recovery. I know it feels like you've been doing this forever. but stroke recovery is unlike anything you've ever tackled before, stroke recovery is measured in months and years not days. and so long as you are working at getting better you will see improvements. Stroke fatigue is a very real thing and you need to get your family to understand it. It's going to be with you for a long time. A stroke seems to add resistance to the connections so it takes more energy to do anything than it used to, and you don't recharge as well either. There's great demonstration/explanation of it called "the spoon theory" that would be worth sharing with your family (sorry I don't have the link for it, but I'm sure one of the others will add it for us.) It sounds like you have returned to work, if you have it may have been too soon. It takes a long time to get well enough to have the stamina and skills you need to cope with the pressures of the work environment. My stroke was not cerabella, and I took nearly 4 years to get back to full time work. Also this thing messes with your head (literally) and you'll probably find some work with a psychologist or psychiatrist helpful. you may also want to see if you can get a referral to a neurophychologist, they help you to understand how the stroke has affected your thinking and processing skills and will help with coping strategies. You ask "when" in a lot of your questions. the answer is "when it happens". It could be tomorrow it could be in 20 years, but the more you work at it the quicker it will be. Don't just do your exercises at therapy find a way to incorporate them into your daily routine. But make sure you also get enough rest. Learning to listen to your body is an important factor in recovery too. All the best -Heather
  14. Ina, Nice to meet you I'm another survivor rather than caregiver. If he's not super mobile yet the local hospital may be too much for him but what about volunteering as a visitor in a nursing home. Nursing homes are used to people who move slowly and there are plenty of people there who'd appreciate someone to chat to regularly. It may also help him to get out and about knowing he is helping others. Ask him what he thinks/wants to do. This has several benefits. It puts him more in charge of his life and gives a feeling of self worth and control of your own destiny (something we tend to question when we can't do what we used to do). If there's something he wants to do but can't actually do yet talk about what his therapy goals need to be to achieve what he wants. Therapy goes quicker and better with a concrete goal (not just "I want to walk better", spell out where he wants to walk to and what conditions he wants to meet in that walk), It also makes it easier to see when you've met that goal and it's time for a new one. You should also look into respite care for him so that you can take some time for yourself too, you can't do this alone and should not be trying too. Can you get another family member to sit with him regularly so that you feel comfortable going out for your exercise or whatever. It may also be good to get him setup with an alert button system so that he can stay home alone without you stressing about it. That would of course also depend on his real independence level. One of the worst parts for me was that loss of independence and the trouble convincing others that I was not a baby or an idiot and I should be allowed to try to look after myself. Yes I stuffed up occasionally, but I learned from that what I could and couldn't do yet, and it didn't kill me it helped to keep me sane. The only way to improve is to stretch your limits. My advice for all caregivers is step back a bit if at all possible, let your strokee try everything, you should only give help/assistance when they ask for it. Let them be stubborn, don't turn them into a baby. OK we might be a toddler but you hold a toddlers hand to keep them safe, you don't do everything for them. Yes balance this principle against your strokee's actual deficits and needs, but remember they were an independent adult before this thing kicked them, and mentally they still are (most of the time).
  15. Hi Deigh, I'd be wary of this. I have no concrete experience but it sounds like seriously wishy washy science, at best. Mind you I have been involved in TMS experiments and I thought that was helpful, although I've no idea if I was in the real or placebo group. My improvements could just as easily have come from the regular therapy/exercise that accompanied the TMS sessions. -Heather