Living with Neuropathy - Welcome to the group

@artist01
When I was on an Epilepsy forum in England. one girls sister notified us when anything serious happened to her. She had very severe status seizures. Members also had occassional meetings and got aquanted with the members & some family members and they notified us. One man who died of Status seizures asked his son to call me if anything happened to him. We were very close.
His grandson used to call me and would always say “will you tell me about my grandpa” It tore me up but I did my best to tell him what what I knew.
I have mentioned In the Seizure thread that a 17-year-old girl died from S.U.D.E.P. ( Sudden Unexpected Death in Epilepsy) her Mom contacted me. We always seemed to find out.
Perhaps people could give a trusted friend or family member Colleen’s contact info and ask that they contact her. In the English forum I requested a memorial section and I wrote a memorial tribute to my friend.
You said you lived another 40 years (so far) So if I live another 40 years I’ll be 108 years old and I am expecting you at my birthday party. You’re only going to be 125 then. Granted it won’t be the most lively party you’ve ever been to
Take care all,
Jake

@artist01
@bustrbrwn22
The medical device wouldn’t help me at least not for my Epilepsy. When I have a seizure I have no time to call out. After, when I’m post-ictal I am confused, in fact I don’t know I had a seizure even though my muscles ache and my tongue & cheeks are chewed up. Then I sleep from 8 hrs to 5 days. So by the time I figure out what happened I'm okay.
As far as terrifying is concerned not at all, At least not to me but probably are for people who see me.
Falling off the house, latter's, trees, getting stuck on a fence, that was embarrassing. The fireman rescued me. I'm so grateful for our emergency workers. But they were more terrifying after the fact.
Take care kids,
Jake

Michael was advocating many forms of medications to to overcome , but after much more research and admitted, to his credit be became a great believer of neuroplasticity, as I do . I you look at my previous post on two books on the on th book by Norman Doidge . Michael is one of the pioneers who accepted the brain is not static, but plastic. I recommend you buy his first 'The brain that changes itself" not only read but research thoroughly. It covers the stories of great people who reached the same conclusions as Michael .

Sorry Sunflower, your money will be a down the drain investment. I have done extensive research, and even the hungry and exploited pharmaceutical companies admit to that much to their financial anguish.

@artist01
When I was on an Epilepsy forum in England. one girls sister notified us when anything serious happened to her. She had very severe status seizures. Members also had occassional meetings and got aquanted with the members & some family members and they notified us. One man who died of Status seizures asked his son to call me if anything happened to him. We were very close.
His grandson used to call me and would always say “will you tell me about my grandpa” It tore me up but I did my best to tell him what what I knew.
I have mentioned In the Seizure thread that a 17-year-old girl died from S.U.D.E.P. ( Sudden Unexpected Death in Epilepsy) her Mom contacted me. We always seemed to find out.
Perhaps people could give a trusted friend or family member Colleen’s contact info and ask that they contact her. In the English forum I requested a memorial section and I wrote a memorial tribute to my friend.
You said you lived another 40 years (so far) So if I live another 40 years I’ll be 108 years old and I am expecting you at my birthday party. You’re only going to be 125 then. Granted it won’t be the most lively party you’ve ever been to
Take care all,
Jake

Hi Barry down under @user_che214927 Your belief in neuroplasticity to help you find relief from your neuropathy symptoms has been very encouraging to other Mayo Clinic members. Many times you have referenced and mentioned to purchase “the book”. Can you please share with us what exercises YOU specifically do and HOW OFTEN? It would be greatly appreciated and informative to others with neuropathy to see if they are able to do some of the exercises. To purchase and read the book may be a struggle as it is with me who also suffers from strabismus. I wish you well and continued success in finding answers. Toni

@avmcbellar @user_che214927 I agree it would be helpful if some of the exercises that worked were shared and how often they need to be practiced. Please?

Thanks Sunnyflower. You have put in lot of work for me anI appreciate it. However I am completely happy with my progress via Neuroplasticity and promise for the future. My diet and exercise plans are working well and at age 90,I am nil medication of any description. Good luck and go for it

Hi @bustrbrwn22 as for myself I did eye exercises daily for 4 months before deciding to stop. I used an app to do the exercise I planned for that day 3 times throughout the day. In the app there were 5 eye exercises total which I rotated to meet my daily schedule. Every month I increased the number of times I performed each exercise by one. I started at 3 times daily and slowly worked my way up to 6 times. I did notice an improvement where my bad eye tried to slide to match the other image. It never got there because I still had double vision. The slow reaction time increased my motion sickness. I also felt the imbalance more in my ears. I stopped so my eyes would settle in time for the surgery since my vision was not correcting. The image of the bad eye kept shifting up and down and not settling. A month after stopping the eye exercises, my ears had less pain and the reaction time of the bad eye has decreased significantly. The bad eye image has almost stopped shifting. My motion sickness has gotten better.
I don’t have an exercise program for other improvements but basically the more you practice the better your outcome. In essence you are retraining your brain to use different pathways to get to the same results. The idea is to bypass the nervous system to use healthy nerves. I use my opposite limbs to complete tasks I used to do in hopes those limbs will get stronger and perform better. I never purchased the books Barry has suggested. Instead, I found basic information online to be able to follow neuroplasticity.
I will say the website I once mentioned for VR therapy(VRxTherapy.com) has contacted me. They asked if I have a pair of VR goggles. The answer is yes. I am hoping for the next step to perform exercises(neuroplasticity) the website recommends for improving my neuropathy. Time and patience is needed to be successful with neuroplasticity. You can put your mind to it, lol. Good luck. Toni