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sparshall (@sparshall)

Peripheral nerve stimulators

Neuropathy | Last Active: Sep 15 11:22pm | Replies (240)

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Hi Rachel, please forgive the length of what follows. I don't know why I didn't just do one encompassing response to you and Lori together, should have. But anyway, yeah, the driving thing. I admire that you are not giving up, that is really good. Keep doing it as you are. I think Linda is at the point where she just can't do it. Her reaction time seems to be not great now. And that makes her hyper nervous to be a driver. She last drove the car on a short local drive last year, possibly August or Sept. Since she rarely leaves our condo now and since I am always around anyway there is no need for her to drive really. But this deterioration of her overall condition this past year has our attention. I also hear you about exercising. Whatever you can do to get yourself to do. It ain't easy that is for sure. I do wish she would push a little more to do some. Easy for me to say, most days she just doesn't have the extra energy for doing any. I got her this vibration machine about a year ago that she stands (or sits) on and it moves around forcing her muscles to compensate for the different positions it puts you in. Even that is hard sometimes. She also tries to do these videos by Marie Esmonde-White. She does these half hour shows of basically body movements and stretches, lots of stretching. Very good actually. I can't do them myself because Marie tends to talk a lot (mostly about nothing) and I get annoyed after a while. Even with the sound off I see her mouth moving constantly and it is distracting. Rachel, you amaze me with what you deal with, shoulders head and neck issues; and then the legs! The legs seem like the worst. We have a wheelchair from Linda's Aunt who passed in 2010 but I hope we can do without that for a long time. So far Linda can walk thank god.

Oh, one thing Lori @lorirenee1 asked is when Linda last saw a neurologist. That would be never. She got the neuropathy 2 days after her last chemo infusion in 2014 and because it wasn't horrible at first we just kind of relied on learning about it online. Anyway at that time we had bigger fish to fry, i.e. we were trying to figure out a way for her to lick cancer without chemo or radiation. We figured that one out in August of 2015 (after her last cancer outbreak that year) with the discovery of something called Haelan 951 (Google it if interested) and cancer is no longer an issue. And we haven't thought about a neurologist because Linda thought "What is a neurologist going to fo? It's obvious I have neuropathy" so she's been coping with it best she can and I retired in 2016 to be her caregiver to whatever extent she needs.. So there you go. Neither of us put a lot of trust in doctors. And Linda does not do well with drugs anyway and we both believe in just living a healthy lifestyle as much as possible. And of course there is Faith. That underpins everything. Ugh! I know what you mean about going on too long. Sorry. Thanks for your post Rachel, you're the best. Hank

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Replies to "Hi Rachel, please forgive the length of what follows. I don't know why I didn't just..."

@jesfactsmon Good morning. Thank you for your reply. You 2 sure have been through the wringer. There is so much to each person's story, once you dig in, and I'm very impressed by Linda's courage and tenacity to keep going. She has been through alot and I can feel, she is a survivor. And you, riding shot gun, takes tenacity, love and dedication. I commend you both. I'm happy to hear Linda does the best she can with movement. That is a big part of the Mayo program….to find each persons speed. I hear you on the Neurologist bit, what can they do typically but prescribe pills and provide procedures. Linda's dealings with so many Drs overtime surely warrants her dismay to see another. I'm glad you've found Connect and can learn from others to give you some insight. Here's hoping for another beautiful day for you and Linda (don't forget the flowers!). I had a surprisingly good day yesterday and staying positive for another. Be well.