I live in Mississauga Ontario Canada. My husband was given the diagnosis of PSP after several years of searching for answers concerning his health issues. I figure he has had it now for 8 years. He has been in a Nursing Home now for 2 years. Last fall he began experiencing pain in his arms and hands which seemed like muscle spasms. With his limited speech ability we tried to put the pieces together as to what was going on--- a burning, throbbing and at times grabbing pain. He spent 3 weeks in hospital where they tested for several things only to find out what it isn’t. One Neurologist had described it as neuropathic pain. He has had 2 rounds of Botox injections to help with spasticity and hopefully pain but as time goes on this pain is becoming harder to control. There seems to be no consistency to when it occurs or how long it will last or the severity of it. As a result it is a guessing game as to what pain medication to use and when to administer it. Right now he is getting hydro morphone 3 times a day and up to 2 extra injections if needed. As soon as they change the schedule of the medication , it works for a day or two and then it doesn’t seem to be effective enough and we’re back to square one. He is a diabetic 2 and has neuropathy in his feet but no one has said that this is neuropathy in his hands. Would love to hear from others if you have heard of similar situations and any suggestions for help. It is awful watching him suffer like this--- you feel so helpless.
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