Living with Neuropathy - Welcome to the group

I was wondering how you had your Dad’s car equipped. Thanks Jim

@qball2019 Excellent advice and it sounds like we have some similarities in selecting a trusted team. I have a great PM, GYN and PCP. I need Neurologist and Rheumatologist. I live in the DFW area and have gone to almost all if not all the Rheumatoid Arthritis practices. Not much comes from them and they won’t work with my PM doctor. I’m having an issue finding a neurologist also. I have one that treats my migraines but thinks all my other diseases and conditions (like EDS) are figments of my imagination. My EDS was diagnosed by another neurologist that my surgeon sent me to. I have a question as to how your EDS is affecting your body. Since I only recently found out about this (I never thought my unusual flexibility being the cause of some of my problems!) I have realized that I don’t have a basis to judge what’s caused by it. Is some of my arthritis?
Thanks and blessings, Susan

@jakedduck1 and @james4753xerxes The Kempf system was created by a man who was determined to solve his own problem: At the beginning . . . the perseverance of one man

Kempf
Kempf Headquarter in Alsace
In 1954

In 1954 Jean-Pierre KEMPF, who had lost the use of both legs after contracting polio, invented the accelerator ring to be able to drive his car keeping both hands on the steering wheel.
He founded his company in his garage and became the leader in his field in France.

First the accelerator ring was a mechanical device with a rod going through the steering column and pushing on the original accelerator pedal.

When steering wheels started having airbags, the accelerator ring became an electronic device and today it uses digital technology.

At the end of his life in 2002, Jean-Pierre KEMPF had sold over 100 000 accelerator rings. Using an accelerator ring became the standard way of driving for a paraplegic driver in France and many other European countries.

Martine KEMPF, Jean-Pierre's daughter is today CEO of KEMPF Inc. in the US.

Martine Kempf is herself a talented inventor and business woman. I was amazed to find that she gave me her direct phone line and that she responded quickly to my emails. The cost of the device includes picking up your vehicle and transporting it on a truck to their facility (mine went to Florida) and returning your vehicle the same way.

Time for a repeat about the Gabapentin "scam" : https://www.nytimes.com/2019/05/20/well/live/millions-take-gabapentin-for-pain-but-theres-scant-evidence-it-works.html

It works really well for me with no side effects. If I am an hour late for a dose, the pain reminds me to take it. I have been taking it for eight years and nothing else works as well. Lyrica did not work for me.

I watched the video. I like the way you can use both hands on the wheel when turning right or left. I have the right kind of car for this application (Acura MDX).

@darlingtondoll Consider yourself one of the fortunate few for whom Gabapentin works well and with no side effects.

I don’t remember the specifics but it was a rod sticking out of the R side of the steering column. He had severe contractions which made it more difficult. He didn’t feel he could drive it safely and had the controls removed and bought a van to accommodate his wheelchair.
Jake

I do think doctors prescribe gaba and lyrica off label for conditions in which it is useless against pain; my husband tried it for sciatica and back pain prior to surgery and it did not help at all. I do know that myself and 3 other friends of mine depend on it (gabapentin only) for our neuropathy, we all use different dosages and they have been on it for 10-20 yrs. I hope I can still say this 10 yrs. from now if the pharma industry doesn’t develop something better. That is not to say that I don’t experience side effects but they don’t outweigh the benefit.

@darlingtondoll @steeldove

Don't mean to chime in on your conversation. I certainly don't mean any disrespect. I have found that Lyrica works better for me than gabapentin. I have used it for about 13 years. I do have some side affects but nothing terrible like I've heard other people talk about. My issues began with a bad fall I took on my kitchen floor. It primarily works the pain associated with my spine. I have vertebrae in a couple different places slipping over the top of each other and 4 osteophytes (bone spurs) in my cervical area that are touching my spinal cord. It does help a little with my tethered cord and Tarlov cyst pain as well. I can't say that I notice much of a difference with the neuropathy though. I've had multiple doctors over the years tell me that everyone is "wired" differently and what works for one may not work for another. You just need to try different things to see if they help.