Thanks for the overwhelming support on this dicussion and also to the moderator who brought it to everyone’s attention via email. The ideas and insight given have given me a lot of help to prepare for future diagnostics and visits with new neuro docs. As usual, this site, and its community of survivors have provided awesome friendship and kindness. Wishing everyone well on their journeys.
I appreciate everyone’s time.
Sincerely,
Dick
Thanks for this support and advice. I appreciate the info on the oils. I’ll have to look into that. I hope that your son are doing well.
Thanks so much. Good to know. Hope your recovery is coming along well too.
This is all great advice and the Rematee could be relevant, as my hemiparesis keeps me uncomfortable some nights when trying to get to sleep. Your detailed advice and sharing has been really helpful and I appreciate it!
Dick,
Are you fmiliar with a therapy called "Constraint Induced Movement Therapy"(CIMT) for overcoming paralysis? CIMT was developed by Dr. Edward Taub at the University of Alabama and has been very successful. Therapists in other states do take training to use thie technique. This link is to the UAB site. They may be able to direct you to someone who uses this therapy in your area if you are interested.
UAB - CI Therapy - Home
https://www.uab.edu/citherapy/
University of Alabama at Birmingham
What is CI Therapy? Constraint-Induced Movement therapy or CI therapy is a new therapeutic approach to rehabilitation of movement after stroke, multiple ...
https://www.uab.edu/citherapy/
CIMT was not around when my left side was paralyzed from a stroke during my AVM surgery. I did some things simiar to the CIMT and recovered. Hope you will too!
It has helped! Thanks!
Thank you for these links on CIMT. I’ve seen folks using this on social media and some are strong proponents of it. My inpatient therapists weren’t trained in this but did mention it. I appreciate the help.
Thanks so much. Stress is hard as I’m working. I recently cut back to 1/2 days, but it’s just as hard. You’re right, the fear is a challenge, more so lately. My GP, neurosurgeon and neurologist are working closely together now, so I do feel as if I’m in good hands as they prepare a new strategy for treatment of headaches and seizures. Thanks for your time and support.
Thank you so much for these suggestions. I’m highly skeptical of the effects of anti-convulsants and agree with your suggestion of research on them. My doctors seem to be cautious about them all and their contraindications with the medications I am already on. It’s hard hearing the suggestion that everything needs to be reworked, but it seems more healthy long term. I wish you the best in your recovery as well! Thanks for this feedback. It’s funny how there is a total second phase for some AVM survivors, dealing with meds. 
did you end up doing this??
did you do this??
Hey Duncan! I’m sorry to have not gotten back to you sooner. My seizures persist, and a neurologist is recommending a VNS implant for my medication resistant, (intractable) epilepsy. As far as the CIMT, I did not ever use this therapy. I am on my second round of OT with another, non-profit group. While my movement got better with therapy, I regressed when not working my home program hard enough. I just refuse to give up, as I have plateaus again when practicing at home and after EStim is applied in and out of therapy. I’m not saying this is the right route for everyone. All brains an injuries are different. From what I heard about CIMT from OTs it sounds like it is often done in the acute phase, right after injury. I think this is what you’re asking that I had done. I was also driving a high performance stick shift to work daily. I gave that up, just switched to automatic though. 
I wish you the best with your recovery. I had and continue to have great mobility with all of the Saebo products. They have ones suited for each stage of your range of motion. I should probably be a paid spokesperson for them, but I won’t do it here. Let me know if you need anything else!
Thank you for taking the time to get back to me!! It may be worth your time to look it up. The book “the brain that changes” got my attention. All ancedotal but it supposedly people have seen improvements even 5 years post stroke. Thank you again for your time!
No problem at all. I’m two years out, but need all I can get back. Starting to get more plateaus as I continue with OT. I wish you and your brother the best. Never give up! It’s worked for me at least. The EStim is a great tool if approved, especially Bioness in acute stages. Check this out and I will do the same about CIMT. Have a great one.