Peripheral Neuropathy and Ebiking

ebikemom

Administrator
Staff member
According to Wikipedia, "Peripheral neuropathy (PN) is damage to or disease affecting nerves, which may impair sensation, movement, gland or organ function, or other aspects of health, depending on the type of nerve affected." PN also causes pain, imparing functionality and quality of life.

This thread is a place for those with PN or who have family, friends or patients with PN can share stories of ebiking. Welcome!
 

Jerry Schmidt

New Member
Posted to a Peripheral Neuropathy group. "I feel that exercise is important to fighting this PN but I can only walk a short distance with my PN. I have found a way to move with very little pain...... Pedego Electric Bike. This kind of pedal assist electric bike allows you fine tune the resistance to your comfort level. Most of the time I use it to have very little resistance so I move my legs freely and scoot down the road with the wind in my face. It is quite a pleasure and gets your blood moving. I usually spend about two hours and travel about 25 mi. I am telling you it makes me happy, a rare thing with this constant pain. I feel pretty convinced that this is a good thing, too bad Doctors can't prescribe an electric bike, might do more good than lots of their damaging drugs."
 

ebikemom

Administrator
Staff member
The capacity of ebiking to improve our lives is amazing. So awesome that you are spending 2 hours a day freely moving and enjoying the feeling of cycling. I agree that an ebike should be considered as therapeutic medical equipment, covered by insurance. I heard a story here where someone did have their ebike covered by insurance. I'm not sure where they live, but I'll keep my eyes peeled. I think I'll start a thread on that topic to see if we can draw out some stories on this topic.
 

Blork

New Member
I have CIDP, which affects my legs and arms. Fortunately I don't have it as bad as some people, but as someone who always had pretty strong and powerful legs it has really bothered me that cycling was getting harder to do. Before I got my e-bike I could occasionally manage a 25-30km ride, but if there were any significant hills or a headwind it would tire me out really quickly. I was worried that I'd find myself 15km from home and suddenly my legs would be sapped and I wouldn't have the strength for the return trip.

My ebike has fixed that. This is my first summer with it, and it's amazing what a difference it makes. I even ride to work about once a week (14km each way, including some big windy hills as I take the Jacques-Cartier Bridge over the Saint Lawrence river). I'm riding more now than I have in years.

The disease also weakens my right ankle, so I got some extra large pedals to make sure I have a solid foot placement on them. My foot would just roll off those tiny pedals that many bikes come with.

One thing I do have to watch out for is my hand grip on the handlebars. In retrospect I should have gotten a bike with a higher seating position, because sometimes, such as when I'm going downhill fast and braking, there's a lot of weight and pressure on my hands. Given that my grip is somewhat weakened, I need to be careful with this. (This is a tip for anyone with weakened arms or hands who is thinking of getting a bike...)

So for me, my ebike has been like a miracle. My sweetie (who does not have a peripheral neuropathy) also got herself an ebike so we can ride together. Best thing ever!
 

ebikemom

Administrator
Staff member
That is so awesome! Pressure on hands/arms is a problem for people with some medical issues. I like the upright seating position of my bike, so I can just rest my hands on the grips without pressure. Super comfortable. I don't have any hand/arm issues, but it just feels good.

Ebiking is a miracle, sometimes small, sometimes large. It's great to have you here on the forum! Thank you for sharing your story!
 

rocky289

Member
Hello from New Zealand.
Good to see a thread like this.
I am a 64 year old male with PN in my hands & feet, & recently diagnosed with Sjogren's Syndrome.
I have always had mountain bikes which I rode occasionally, but since having to give up work it became my main source of exercise.
As some of you have already mentioned, this can have its difficulties.
Living in Central Otago there are plenty of good cycle trails
So my current ride is a Haibike SDURO Fullnine RC.
I have to use the clip-ons to keep my feet on the pedals & have recently changed the gear shift from trigger to grip shift.
I try to get out every second day for a 20k ride & have clocked up almost 10,000k in 2 years.
 

currypotter

New Member
I have HNPP (Hereditary Neuropathy with Liability to Pressure Palsy ). I'm lucky I do not have its cousin, CMT. My e-bike allows me to cycle without damaging the mylein sheath on my nerves...too much. It is a weird and rare condition (1 in 100,000) that has to be managed with no cure. Although the mylein can grow back, people with HNPP need to understand that it can take weeks/months for the mylein to recover and in some cases, it never fully recovers. Hands and feet are the big ones for cycling. I have a riser extension on my handlebars so I ride like Pee Wee Hermin to reduce pressure on the hands. It does confuse people to see a Pee Wee Hermin bike travelling at 28 mph :) My hands do get a little tingly sometimes but it is manageable. As far as feet go, I cannot use toe clips as pressure on the front of my foot causes almost instant numbness, so I ride with the pedal position to the back of my foot which is not ideal/efficient, but with an e-bike it works.
 

currypotter

New Member
Hello from New Zealand.
Good to see a thread like this.
I am a 64 year old male with PN in my hands & feet, & recently diagnosed with Sjogren's Syndrome.
I have always had mountain bikes which I rode occasionally, but since having to give up work it became my main source of exercise.
As some of you have already mentioned, this can have its difficulties.
Living in Central Otago there are plenty of good cycle trails
So my current ride is a Haibike SDURO Fullnine RC.
I have to use the clip-ons to keep my feet on the pedals & have recently changed the gear shift from trigger to grip shift.
I try to get out every second day for a 20k ride & have clocked up almost 10,000k in 2 years.
Great to hear you are adapting and not letting it get you down.
 

Blork

New Member
@currypotter, regarding pedals, I swapped out my bike's standard pedals for a pair of "Catalyst" pedals. They're large platform pedals that are great for keeping my feet from falling off. I've seen similar (but not quite as big) ones at my local bike shop which were less expensive. Regardless, that *style* of pedal is really good for people with peripheral neuropathies, especially if you have "drop-foot" or whatever.
https://pedalinginnovations.com/buy-your-pedals/

The other day I rode someone else's bike (with regular pedals) for about three minutes and my right foot rolled off the pedal twice!

(BTW, this isn't some kind of marketing thing; I get nothing for endorsing these pedals.)
 

currypotter

New Member
@currypotter, regarding pedals, I swapped out my bike's standard pedals for a pair of "Catalyst" pedals. They're large platform pedals that are great for keeping my feet from falling off. I've seen similar (but not quite as big) ones at my local bike shop which were less expensive. Regardless, that *style* of pedal is really good for people with peripheral neuropathies, especially if you have "drop-foot" or whatever.
https://pedalinginnovations.com/buy-your-pedals/

The other day I rode someone else's bike (with regular pedals) for about three minutes and my right foot rolled off the pedal twice!

(BTW, this isn't some kind of marketing thing; I get nothing for endorsing these pedals.)
Great info, it's what this forum is for - the sharing of information. I don't have a drop foot at this time but I know it will happen sooner or later, it's part of the HNPP.
 
I severely damaged my ulnar nerve a few years ago, leading to neuropathy in my right arm. Riding my standard bike with tubes for handlebars was very painful after a few minutes, I didn't know there were any other options before I saw the ergonomic grips on the juiced ccs. The flat spot there has helped tremendously, as has the option to just sit back and let the bike help me along if I can't put any weight on that arm, on a bad day. It's allowed me to resurrect my favorite method of transportation. I've commuted to work on it every day since receiving it.
 

currypotter

New Member
I severely damaged my ulnar nerve a few years ago, leading to neuropathy in my right arm. Riding my standard bike with tubes for handlebars was very painful after a few minutes, I didn't know there were any other options before I saw the ergonomic grips on the juiced ccs. The flat spot there has helped tremendously, as has the option to just sit back and let the bike help me along if I can't put any weight on that arm, on a bad day. It's allowed me to resurrect my favorite method of transportation. I've commuted to work on it every day since receiving it.
Indeed, when I went to pick up my bike, I got them to change out the grips for Ergon1 grips with the flat spot. These are also locking grips, meaning they do not rotate under force. If you have not done so, take a look at a handle bar which is swept back or a riser which you can bring the bars up and backwards towards you for a more upright position. I got them to install this riser for me when I picked up the bike.

20180830_083343[1].jpg
 
This thread actually got me thinking about some wrist pain I've been having. I'm 6'3, and the seatpost on my CCS is super high, but the ergo grips are defaulted to flat. I rotated them to a high angle, in line with my wrists, and it's so much more comfortable. I never thought about adjusting them before.
 

larry-new

Active Member
Grips, hand numbness, and seat placement are interconnected. Changing one may affect the others.

I was reminded of this as I've been upgrading my seat and grips (Bikeroo and Ergon 3) for less pain on longer rides. Before this, I'd been getting serious numbing on one hand, and gradually straightening up my adjustable stem to give a more upright position (anathema to a road rider) to lessen the hand problem.

So today the seat comes in...the grips are coming from Germany. So on goes the seat, and I'm out doing 20 miles or so, and stopping to adjust. I've got the seat all the way back, which feels good on the bum, but with no difference in my hands. All of a sudden I decide to try the opposite with handlebar and stem...do I put the stem almost flat out at 5 degrees ....and the hand numbness is reduced substantially! Wow.

I'm happier stretched out with a high but downward sloping seat...so now I'm not exactly drop-bar low, but comparatively.

Meanwhile, a couple racers come up behind, and I step on it, and led them for miles...mostly with leg power...not a bad present for my 71st birthday in two days.