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@pek59

After too many bad experiences with doctors over the years (we are 64), I know I have to do my own research and must trust no one as having the final word (get second and third opinions). It's simply a fact of life. My husband's quality of life is too important to leave any stone un-turned. I’ve done countless hours of online searching--since he had a stroke in June 2021--since my husband is not able to do it for himself. EnableMe.org.au is a website in Australia "dedicated to stroke recovery and support." I’ve found it Much more helpful than any of the American stroke websites. I signed up for email notices of current medical research trials to participate in (clinicalconnection.com). Most search words take me to http://www.ncbi.nlm.nih.gov (the National Center for Biotechnology Information at the National Library of Medicine for the National Institute of Health). The scientific articles there provide “information to advance science and health by providing access to biomedical and genomic information.” Even though I don’t understand all the lingo (including “genomic” :), it’s worth the time to read as much as I’m able, just in case there’s a lead to a possible treatment (for post-stroke head pains, dizziness, fatigue, tinnitus, hyperacusis/sound sensitivity). Often I read there that “more research is needed.” With the Baby Boomers at the ages for stroke risk, I wonder why more research hasn't been done in anticipation of this. But Don’t get discouraged. Neuroplasticity is key, and there are books to learn how to leverage it. Just be aware that memory damage might a significant hindrance for making the most of that science (at least it is for us). I thank God for the Internet! I also find it a real blessing to connect with others who are living what I’m living as a support person and to pray together--plus I sometimes gain helpful information. I chose one that’s faith-based (“Nourish”) and one for dizziness (dizzycoach--led by a physical therapist). There are online groups for stroke survivors who are able to participate.

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Replies to "After too many bad experiences with doctors over the years (we are 64), I know I..."

Thanks for the tip on the Australian site. Your husband is lucky to have you!

“post-stroke head pains, dizziness, fatigue, tinnitus, hyperacusis/sound sensitivity” have you found any help for these? I sure hope so and would appreciate any suggestions to learn more.

I hope your husband is feeling better.