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  2. My Late Father who was a pediatrician was old school and would contact Specialists so the parents would be at ease. It sounds like this Neurologist is from the same old school medicine. Great that you found a good team to address your issues.
  3. Lin he has written a few papers that are out on pubmed but they are mostly about dementia and 1 about nitrous oxide abuse induced neuropathy, of course the collected works of this forum would probably be a study all by itself.
  4. Incredible! Now this is a doctor who should be conducting and writing medical studies; going to suggest it to him, Scott??
  5. holy cow. 120.. I started to sweat for you. I think choosing to wait was very wise.. melting is something I like to feel.. (dry heat my foot) hot is hot
  6. That is a story told oh so many times and it breaks my heart . Things will get more fluid moving. You and he are justing starting out with introducing relations so it's a process. I hope as time goes on,you are able to do more for yourself and that would show him you are your own person. I hope with all of my being that you are able to flow again. :)
  7. Kathy, my heart goes out to you. As you said before and is sound advice, it's not you. Brain injuries can cause changes in someone no one can understand sometimes. I'd just brush myself off and move forward. You did what you could do and you are a good person . He maybe feeling a change within him and doesn't want you to go through it. I know that you would but there are some things no one can do for a person that matters. it's within them but this is going to far. I wouldn't even let him get to you. what an aresehat...jerk
  8. Hi, loved reading your story; I can relate to the "H"s of summer! The heat, humidity (which you probably don't get in Arizona), and hungry insects make me love snow more and more. Since the heat drains me of energy, I find it a "H" of a time to do the packing and organizing required to move. Great idea to have someone you know rent your home after you leave it; even after carefully screening people you don't know that may want to rent it, can lead to damage that would be costly to repair before selling the house. And thank you for sharing about calling your coffee-maker stupid....Now I know I'm not the only one who calls items stupid, LOL. Happy summer,
  9. Welcome to StrokeNet. Please feel free to browse around and get to know the others. If you have any questions please don't hesitate to ask.

  10. Welcome to StrokeNet. Please feel free to browse around and get to know the others. If you have any questions please don't hesitate to ask.

  11. Thanks for all the feedback. I think between this neurologist, my PCP and the physical therapist I finally have a winning team. Yesterday I got something from the neurologists office and opened it with some trepidation, it was a prescription for some blood tests for vitamin deficiencies, some rheumatism genetic testing, and a couple tests to rule out lupus as a cause for the pain. It would appear his is eliminating other possibilities to determine the best course forward. And he took the time to actually call my PCP and have a discussion about my case, now that's an example of a doctor that really cares and isn't just going through the motions.
  12. Hi Pearls, I love the advice you received about starting to push back some boundaries; you'll know how much you can handle without overdoing it. Maybe it's time to put your own stamp on your home again to make it yours. I love to redecorate and have given advice to friends on how to do it without spending a lot of money. Your furniture would be very expensive to replace, but different accent colors can make a significant change. For instance, buy or have someone make some inexpensive throw cushions for your living room and bedroom. Have someone go with you to a thrift shop, you'll find some beautiful decorative pieces at a very low cost to be used in any room in your home. The items you see may spark your imagination on what accent color(s) you'd like to have. Because many people now use LED candles to eliminate the fire risk, I always look at the many candle holders in thrift shops, especially those that are around 1 foot high. The metal art of some of these candle holders is incredible. These are the ones that I buy for 99 cents, take to a welding shop to have the holders removed (no cost because it only takes them a minute or less), and then buy some spray paint in whatever color I want. I spray paint them myself if they're not too difficult, and have a friend spray paint the ones that need some skill. Inexpensive beautiful metal art for your home, and also are great low cost gifts....no one would ever guess they had been candle holders! Best wishes and hugs,
  13. Hi again Kim, I have another idea that may help... Have you considered date nights? If it's difficult to go out to restaurants, movies, etc., you can have date nights right at home. Make certain your husband's mind is not occupied by thoughts of work, that there is no one else in your home, and go for it. Some order-in food, some candles, some music, some talk about when and why you and he fell in love....
  14. Scott, I'm totally wowed by you finally getting great health care.....lots and lots of HOPE!!
  15. Melting

    With the temperatures nearing 120 in our area this past week, we are melting in Arizona. It would have been a horrible week to close on the house and try to move in these hotter than "H" temps, so it's just as well the closing got delayed again. While I'm having flashbacks of what happened in 2012 when we thought we were going to close on a house in AZ, I'm almost certain it will eventually happen now, although I can't say for sure exactly what date it will happen. This time the delay seems to be the finance guy who didn't get the appraisal ordered in time and now the underwriter for the loan isn't happy with the appraisal as submitted, so they need to find more comparables in the area. If it wasn't hot enough here already, I got a little hot under the collar with this latest setback. lol Tentative date for closing is now Friday, the 30th - my 69th birthday - and would have been our son, Dan's 44th birthday, had we not lost him a year ago on the 22nd of June. Most of our household belongings are packed and ready for the move. In fact, I'm finding that I need things that are already packed - somewhere in one of those boxes or bins piled in the study, that now looks like a hoarders house when you walk into the room. :) I've unpacked several things once the girls had them already packed just to be able to fix a meal, and when I couldn't find what I needed, I had to improvise (actually cooked a Schwans pizza one night using a casserole dish and putting slices at a time in it too bake since the whole pizza was too big to fit). :) And, after tossing out my old coffeemaker thinking we would be in the new house by this weekend and I would get a new one, I ended up having to hit the store closing sale at the local Big Lots store to find one and set it up so I could have my morning coffee for another week. Note to self - don't try setting up a new coffeemaker at 2 a.m. when you can't even open your eyes all the way to read the directions. And, by all means don't call the coffeemaker stupid when it's really not the machines fault you can't comprehend directions at 2 a.m. sheesh!! I'm on my second cup of coffee now and it all worked out so neither of us were that stupid after all. lol Our current home didn't sell like I had hoped it would before we move, so our caregiver Kelly will move in here and rent from us for at least a year, and then we may try again. It will be easier for me to have someone here who can keep up the lot rent and maintain the place as opposed to having to pay someone to continually check on it or make the 40 min. drive several times a week to check on it myself. She can also try to sell the golf cart for me and I've offered to pay her a commission if she sells it. She will continue to work for us and help with Gary several days a week at our new home. We will adjust her hours so she's only having to drive that 40 min. drive twice a week and she can work longer days, so no cutting of hours. I'm going to attempt to get a few more hours sleep before the sun rises, so will update when we actually get moved - hoping it happens before the 4th of July weekend, as I've already switched the utilities into our name and have the cable tv and internet installation set up for July 3rd. Sarah
  16. Hi Becky and Scott, So good when you get a therapist that explores stuff with you. I so get the weak butt thing. My weak butt and hamstrings are currently causing me grief with left heel strike that I need to get to increase my stride length and walking speed. I'm going to have to try butt walking. I got my quads going well by knee walking but hadn't thought to try butt walking, will discuss it with the team next visit. Scott fingers etc. crossed that you succeed in the "brain/pain" training. My neurophysio does some of that with me and whenever we do arm work I have to describe any sensations so that he can reinforce the right ones. I think this approach is a large part of why I don't have CPS. He's been actively working to make sure it doesn't develop.
  17. Last week
  18. Welcome to StrokeNet. Please feel free to browse around and get to know the others. If you have any questions please don't hesitate to ask.

  19. Good luck, Pearls, and keep us updated, as I can always use good ideas in this area, and I'm sure there are others. Becky
  20. Good therapists are worth their weight in gold, aren't they? Yesterday, my new therapist taught me to butt-walk. She said that my butt muscles are weak, and that's why I can't move my lt foot backwards (can't butt-walk well either). Butt-muscles are connected to the ham-strings. Makes sense, doesn't it? I gage how good a therapist is by how I feel after therapy. Yesterday, I was exhausted. Means she was making me work muscles that weren't used to having to work. A good therapist. A GOOD therapist, and a GOOD doc? You've been twice-blessed, to make up for all of your crappy experiences. And, you deserve it. We all do. It just doesn't always work out that way.GOOD NEWS. Becky
  21. I have the opposite problem, I'm always cold, no matter what the temperature is. The doctor says that the stroke damaged my central temperature control part of my brain. I think this is the better problem to have. But I don't like either one. of them. One of my friends practices Buddhism and says he includes me in his daily chant.Many others have included me in their prayer circles. Such support is really appreciated. It makes me realize that people do care.Hopefully, you'll find a doctor who can help you with this issue.
  22. Thank you everyone for all your comments and advice. I have taken them to heart and am planning, planning new approaches.
  23. My new neurologist has sent me back to PT. I met the therapist I will be working with 1 on 1 yesterday, she is refreshingly pleasant compared to the outpatient therapists I've had in the past and has extensive training and experience with stroke survivors. Her evaluation of my right shoulder pain was completely different from any other I've had. She did a lot of range of motion tests but the passive ones which no one bothered with before told the story. It turns out my right shoulder pain is not physical as several doctors and therapists, ortho and otherwise have pronounced but a part of my central pain syndrome. While most of my right side is involved my right shoulder is the worst because of the spasticity compounding the CPS. So next week we start rehab aimed at teaching my brain that not all signals are pain. I'm not sure how it all works but she discussed mirror therapy, some exercises and how we will work to reprogram my brain so it doesn't perceive all arm movement as painful. She described it as being similar to what I had to learn about sensations as an infant which is how I have often described PT myself, relearning all the stuff I was good at by age 2. I like this new neuro and she also spoke highly of him and how involved with his patients he is and she instilled a new sense of optimism that I've not had in a while.
  24. Oh yes wjy do those of us in that mid range get so little support? I was 45 when I had my stroke and I learned very fast that I had to fight to get "the system" to acknowledge that I needed to access the help provided for senior citizens. And yes those family change rooms are marvelous things, I wish they were more common. Water therapy makes a huge difference it makes so many movements that you can't do on land accessible, It's mostly because the water provides support against gravity. as I learned quickly and still say constantly "gravity sucks". Your idea of a spa sounds brilliant. The thing that I want is the ability to hire a care with the hand controls I need. I've heard that this is available in the US. It certainly isn't here in Australia and it means if I go on a holiday I have to drive there (i.e. bring my car with me) or fly and then rely on buses and taxis. which is never easy in a strange town. It's not like the hand controls are expensive com[pared to the cost of the car and they don't stop the car being usable for other drivers.
  25. Kim it really is common, Have a look here and see if some of this info helps. https://enableme.org.au/Resources/Sex Overall take your time together and you'll find ways to enjoy each other again.
  26. Kim, This is a very common issue following a stroke. It's so common, that our Kelli has lead 2 discussion groups about the topic. It is no one's fault, it just happens to some couples. It can be due to the stress of the situation, as you said. My husband said to me that he couldn't be my caregiver and lover at the same time, which, it seems is also a common response for males. In time, he may be able to deal with the feelings that he's having. But, until then, try to let him know that it's all right, you still love him, and enjoy cuddling until he's able to experience more sexual contact. Becky
  27. Good advice for you so far. I remember when everything was strange to me, even my own hands didn't always seem to be mine. I started out with easy things like vacuuming the kitchen floor. Exhausting at first but it started me getting reintroduced to our house. Then another room. Then I realized I couldn't find things in the cupboards so we had to reorganize them so that sort of forced me to think about things and find my physical limits of what I could reach. Laundry seems easy but most people don't realize how much cognition is involved. So I guess what I'm getting at is as Heather said, pick a task and just start doing what you can. Your caregivers may be concerned that you are over doing it, but that's really the point isn't it. Pushing back the boundaries be they physical or cognitive
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