Stroke Survivor - male
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About scottm

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    Senior Mentor
  • Birthday 06/05/1958

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  1. 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.
  2. 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.
  3. I've been dealing with the never ending pain that sometimes comes with a stroke. Even though the new neurologist put me on Lamotrigine 200 mg twice a day, the pain continues to escalate. Sometimes it subdues for a bit but it is my ever present companion who is like having a pet who was abandoned and is now afraid to leave your side, we have a cat like that. I can't blame the neurologist as it was his first attempt to control the pain and this is a purely trial and error process, which makes it very frustrating to think 'maybe this time it will help' then nothing or a bad side effect that causes an abort of the trial. Well, that is where I've been hiding out. Playing the wait and see game while at the same the realizing this isn't doing much if anything while the whole sensory system spins out of my control. I never really understood the word intractable before on a personal level. Well, that is my round of woe is me. Time marches on and eventually we'll find something that works, we all have to adapt if we ever hope to overcome.
  4. Becky, I do the same thing for the same reason, I'm never sure if I will perform the task. Last weekend I got up off the bed to rub my wifes aching feet and just fell face first onto the bed where I knocked a lens out of my glasses. Couldn't walk and ended up having to fix my glasses. Oh, yes my wife did get her foot rub it was just delayed a bit.
  5. Yes, the pharmacy's still carry oxy as do the illegal dealers but its street use is in decline because heroin, fentaynl and carfentanyl (used to sedate large animals like elephants) are readily available and far cheaper. These are all killing people but the worst is carfentanyl because it is 10,000 times more potent than morphine and being illegally imported from China I've read in the papers.
  6. New neuro, back to PT and new meds. Doc actually said he would find it embarrassing if he gave me the meds my last neuro did because of all the side effects, he said he was surprised I hadn't had to go to the ER. PT has been twice a week and they work me hard. Anyone else had the cone obstacle course? That is both a physical and cognitive therapy, figuring out how to get through it then doing so.
  7. Now granted the sensations are very faint but they are there after 2.5 years. I discovered this the other night when the wife was rubbing my calf to try to help with the spasms and ended up rubbing my foot. It took a few seconds to register then I told her I think I feel that. She tried again and yes, I could feel a very slight pressure sort of sensation Hopefully it gets stronger but for now this will do. Should help me walk a little better if I can feel my foot.
  8. I read an article recently that explained that the stem cells they use for joint injections are actually not living cells, the freezing kills them so they actually had no therapeutic value. The clinics that sell that 'service' charge up to $5000 and when it doesn't work they just say that it is experimental and since insurance doesn't cover it they won't get involved as an advocate. I did try to get into a trial last year that injected live stemcells into the brain but didn't meet all the criteria, I'm waiting for the results to be published to see the how it turned out. I remembet someone here had gotten into that trial but don't remember who (shocking I know).
  9. Deigh, Essentially what it means is I won’t interfere or bother myself with trouble in a place I don’t belong to or have no authority — it’s someone else’s job to deal with this
  10. Lin, I use all scent free laundry products because it feel like I'm in a cocoon of smells. Sometimes a dryer sheet get left behind in the dryer and that means rewashing if I didn't notice it there. We don't even want to talk about the annual algae bloom and how it makes the water smell.
  11. Depending where the injury took place you strength per limb or anywhere else body wise can vary. My left arm still has its strength while my right is much weaker, same with the legs. PT is helping to build some of the strength back up but my neurologist told me that the central nervous system and how the signals feedback can greatly affect strength. Neuroplasticity is your friend with this.
  12. I used to be a type A personality, an overachiever with a tendency for anger if provoked. Now I'm very laid back and anger is something that takes me a very long time to get there. When all is said and done, I'm wasn't supposed to survive but got a second chance which I don't plan to squander on others drama. As I've told a few; not my circus, not my monkeys.
  13. 2 1/2 years later and I continue to heal, slower but healing. It is not like nothing happened as there are almost always some residual effects that can last a long time, we call this the new normal. For example I slowly got the use of my right arm back with a lot of PT and practice. I can walk pretty good but still sometime stumble on nothing. So those are my wins. Down sides are vertigo and CPS.But we take the victories where we can and deal with the losses. The 6 month thing is from before they understood so much about strokes and how to rehabilitate from it, not at all true as most here would attest.
  14. Smell is something I work hard to suppress in myself. The shower and any running water smells like a chlorine gas chamber and I can even smell the very minute amounts of hydrogen sulfide gas from the zincs in the hot water tank, a new post stroke attribute. I grew up on a fruit and vegetable farm and the smell of cherries in bloom was wonderful. I still remember fondly the sights and smells of walking through a 20+ acre cherry or apple orchard in full bloom.
  15. I have found that the doctors I specifically ask for notes about our discussion understand why when they understand that I had a stroke. All I need is a couple sentences or 3 hitting the main points of the discussion. If they won't do that you need to get a different doctor because that one doesn't understand what a stroke does to us.