Stroke Survivor - female
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About Linnie

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    Chief Mentor
  • Birthday 10/12/1958

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  • Stroke Network Email

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  • Stroke Anniversary (first stroke)
  • Stroke Anniversary (second stroke)
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    Music, volunteer work, hiking, decorating
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  1. Thanks ladies/friends. Heather, you're absolutely spot on about advising the stroke survivor ways of helping his/her family to understand....I could give the individual articles we've found on internet regarding this! Hadn't thought of that (so much for my skills, Becky, lol). I've been told by the hospital that if I accept, I would be matched with someone who has aphasia as well as cognitive deficits, and that they've seen the family become upset and less willing to visit because of the survivor's emotional state. My regular volunteer work doesn't take up all of my time, so I can fit this in. I'd definitely encourage the survivor to register with this site when he/she becomes able to. But it still leaves me with my poor attempt to leave a day's problems where they belong; not to bring them home with you. I'll have to work hard on that! We're way behind on the game here! I've recently been working with the Canadian Heart and Stroke Foundation, reviewing their material, plans to have a chat group with heart and stroke survivors together, huh?, and no plans at all for providing advice to the caregivers. They don't listen well.... Becky, do you feel that in the States, they're doing better, or the same? (Heather, an aside: I've noticed that you've clarified what I was attempting to say in posts in a couple of different situations recently....thank you and hugs, my dear friend.)
  2. Hi Scott, I know very little about CPS, but easily understood your message. Like you say "trial and error". All my hopes that it is not a long wait before your neurologist finds the "right" medication for you!
  3. Not good news, my Texas friend/sis. But you can count on someone who uses medication for PBA can give you more insight!
  4. Hi Penn, sorry to invade, but I have a related question. Those darned cognitive problems, lol! Before my question, I sincerely hope that the above excellent posts have helped you. Why is it that some stroke survivors who cannot use one of their hands are able to have surgery to address this, but others can't?? Thanks in advance for anyone who can explain it to me.
  5. Hi Donna, I just checked and among the common side effects are stomach pain and vomiting. And like any medication, it may interact with meds you're already on. I always contact my pharmacist rather than the prescribing doctor regarding side effects, because they seem more knowledgeable. And make certain they know of any other meds you're on.... Just curious, on the medication info page you would have been given when you filled the prescription, did it mention stomach problems?? If not, print out the info from the rxlist link above and show to doctor or pharmacist. Good luck, my friend, you're having much-needed fun, so you don't want nausea to deal with!!
  6. Hi Nancy, Many, many hugs! I have read some of your previous blogs, and understand the ordeal you are going through. I'm a stroke survivor for many years, and am able to deal with my difficulties now. I truly understand that is not always the case. First of all, even though you say you're devastated and elevated at the same time, I sense a bit of guilt. DO NOT FEEL GUILTY! Your husband has made a decision, not you! I really don't know what to say....possibly talk to a doctor if you feel it would help to have their opinion. (In Canada, it's legal for medical doctors to provide assisted suicide, but only in certain circumstances. I understand that it is legal in some of the states as well, but don't know which states and the criteria that has to be met there to have a doctor assist.) Nancy, my heart goes out to you! I wish I could provide you with advice, but I really can't. Just know that I truly care that you look after your health! Edit: I hope Nancy that you have discussed this openly with your adult children. I want to think that in the event your husband does pass away, your children will be holding your hand as well as his.
  7. Hi everyone, Are any of you comfortable providing face-to-face support to a stroke survivor, who needs someone to talk with, question, deal with family not understanding what they’re going through, etc.? Basically the same as we do here on StrokeNet. (JayAllenJohn, I know that you provide this form of support, so I’m interested in your feedback too.) The reason I ask is that I was contacted by the hospital in the town I live in (which now has a stroke unit!!), if they could assign a stroke survivor to me for support. I told them I would have to think about it. My concern is that I know I get attached very quickly to anyone who has had a stroke, and want to give them all the help I can. With face-to-face support, I’m afraid of replacing the survivor’s family, who may feel they no longer need to become knowledgeable about the after-effects of a stroke. I really want families to become more aware and understanding. Somewhat, nuh...a great deal, uncertain about my logic on this. I have in the past met with a person I had known through my pre-stroke employment to answer her questions about her cognitive problems and not feeling comfortable with herself after neurosurgery to remove a benign brain tumor. Her family and friends were very supportive, but she wanted to talk with someone who had undergone neurosurgeries. After a few months of meeting for coffee, she was better able to accept herself. Recently, I became acquainted (through the provincial CPD - Council of Persons with Disabilities) with another lady who does not have brain injury, but massive physical impairments after a car accident. The issue isn’t her damaged motor skills, it’s the anger that she has been venting to everyone, including her 10-year-old daughter (her only family connection). She went to appointments with a mental health care professional for more than a year, but now refuses to go because she feels they don’t understand. The CPD are very concerned about the effects on her child, as am I. They think I can help because of my anger after my strokes, which I was able to overcome. I don’t have a problem with attempting to help plan is to have her vent her anger through other methods and never direct it at her child, as well as convince her that if she became cooperative with the PT, OT and mental health professional (definitely suggest possibly different ones that she could develop rapport with), she’d learn strategies for coping and be able to let the anger dissipate. I’d appreciate any advice as how I could feel comfortable with face-to-face support to a stroke survivor without over-doing it! BTW, the hospital policy is for support people to have contact mainly with survivor only, very little interaction with family. (Obvious that medical personnel still don't truly understand the importance of family support.)
  8. Jan, My hope is still strong for you. Once you can begin to receive therapy for using your hand post-surgery, I'm looking forward to knowing how it's going! Hugs
  9. Hi, I definitely agree with Heather, tell your family that there is not a good relationship between you and the agency caregiver. They may choose a different agency, or a different caregiver from the same agency. Perhaps this caregiver has never worked with a stroke survivor before. Best of wishes,
  10. Hi again, I'm very glad that Becky addressed your depression. Please understand that I don't wish to hurt you, I want to help you! Ina, I hold tight to my positive attitude....never going to let it go! After the first 18 months or so post-stroke, I had negative thoughts about my difficulty in trying to re-learn many everyday tasks, including speaking, reading, remaining focused, etc. I finally realized that I couldn't improve until I made that negativity stop. I still have difficulties, but they're much easier to deal with now because of my happiness and positive outlook on life. My friend, I want to suggest you do the same. I don't know much about meds (I just have a Px for asthma and allergies), but I never thought of it as time consuming. I know many people who have HBP, and either purchase a blood pressure monitor or stop by a pharmacy on their way home to have it checked on a regular basis. Their doctor can easily change the dosage if it's not maintaining their pressure at a safe level. Try to relax, your husband's doctor will take care of this. You can feel positive because of the fact that he survived the stroke. Not everyone does! Also, many survivors are more debilitated and unable to make the progress he has made so quickly. Another positive! You can also feel positive that your CHF is well managed by medication. Feel positive that your friends find you helpful for advice, and they'd understand if you couldn't assist them at that very moment. If it's serious, they can go to a medical clinic or a hospital. Trust me, Ina, looking at everything from a different angle makes a dramatic difference. It's very similar to the way we react when we lose someone we love....we mourn for a period of time, but come to a point where we know we were blessed to have known and loved these people. You deserve happiness, but to achieve it requires positive thinking. You mentioned the anti-depressant didn't work. Did you ask your doctor to try a different medication? I've seen posts on this site where members said they had to try different meds until they found one or a combo that worked, and they have to be on the med for some time prior to knowing if it is effective. Also, you probably had counselling because of the PTSD; you may want to consider seeing a professional counsellor again. I hope I'm not coming on too strong; I sincerely want you to see the joy in life. Here's to many years of happiness! Take care, my friend.
  11. Hi Ed, and welcome to StrokeNet. Wow, you really did have a bad day!! Before I give you some suggestions, I need to tell you that I'm so impressed by you. I admire your sense of humor: "vision is not focused but working with the eye Dr so have my fingers crossed ( not my eyes )" lol, and the fact that already some of your thoughts are positive....I like you a bunch! You've been given some excellent feedback re fatigue, emotions, the length of time recovery can take, etc. Much of this is related to the severity of your stroke and the location in your brain. Same as recovery, Ed, it's different for each of us survivors. Some experience it for a very short time, others (including me) didn't come out of the fog for a little over a year. (I'm going to spare you and not say "be patient"; you'll be hearing that a lot!) I think you'll get your balance back....when? Again, can vary. But...since you're having some balance problems, please be very careful if climbing ladders! Definitely don't need another bad day, right? Unfortunately, Ed, many of us survivors had to face the same problem, feeling that no one understands. (I had a hard time with this when I had my strokes at age 34, but later on (actually, much later on, lol), I realized that I didn't really understand the after-effects of a stroke until I experienced it myself.) Family support is so necessary! As suggested, finding articles on internet for your family to read would be helpful. Other methods: Any possibility that your family would join this site under the Stroke Caregiver and Family Support Forum? They would see that other survivors are in the same difficult situation as you. There is a list of books, some written by stroke survivors, some by doctors, that you can locate by clicking on Quick Links, then StrokeNet Websites>>>>Stroke Resources>>>> BookShop. When you reach that page click on the graphic of the man entering a book, and you'll find the listing. You may discover just the right book(s) to order and ask your family to read. Also, Heather's suggestion "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" is important. You may want to invite your family to accompany you. (Heather, I'm going to borrow something I read in one of your posts some time ago that really stuck with me, thank you my friend, and please correct it if I get it wrong). Ed, the neural pathways for deficits on your affected side take some time to heal and re-wire after a stroke, the same applies for pathways to emotions, thoughts, interest in previous activities, new interests, etc. Urrh, I already told you I won't say "be patient". As you were previously advised, recovery can continue for a very long time. Never give up! Years ago, neurologists said that you reached your plateau when one year had me, it's BS! At times, your progress may slow down or even halt for a period of time; but don't worry, the progress will become active again. That's a good sign, Ed. You know your limitations, and you're getting the rest you require. Please don't hesitate to ask more questions, when you're ready. The Stroke Survivor Support Forum as well as Community Discussions Forum have topics that may help you, and you can start any new topic you wish. We're here for you, Ed. You'll get through this!
  12. Hi Jan, All my wishes that the surgery is successful! Please let us know
  13. Slow but steady, you'll continue with the progress. Knowing it will occur definitely helps! Hope you keep in touch to let us know how you're doing. All the best,
  14. Hi again, thank you so much for responding to my question. I'm the type that would worry about you if action wasn't being taken to reduce your risk!
  15. Hi Melissa, I'm so sorry to hear about your distress. I'm a survivor, and yep, for a period of time, we're not easy to deal with, unable to accept what happened to us. I'm so thankful that my caregivers put up with me (I'm not sure if I would have put up with me, lol). The strokes are so unexpected (I was age 34, the same for Kelli), and many of us survivors can't control our emotions which can lead to insulting the people we love. (Trust me, later on in the recovery, we apologize!!) Some of the major problems for survivors is feeling alone, that no one understands us; loss of self-esteem; uncertainty about our future, etc. It's very early in his recovery, and as Kelli commented it will become more stable, but it takes time. I'm so glad you joined StrokeNet to share your experience as a caregiver, and to ask for advice. Is there any possibility that your husband may join us as a survivor so that he'll know he's not alone? If he vents his feelings on this site or at a Stroke Support group, it may reduce the emotional upheaval in your home. My thoughts are with you, Melissa. Thank you for being a caregiver; it's not an easy task!