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-   -   How Many Of You Have A Disability? (https://www.bikeforums.net/adaptive-cycling-handcycles-amputee-adaptation-visual-impairment-other-needs/194939-how-many-you-have-disability.html)

abledbr 01-14-17 09:08 AM

I have several disability's including Moebius Syndrome and Poland's Syndrome.
https://en.wikipedia.org/wiki/Poland_syndrome https://rarediseases.org/rare-diseas...bius-syndrome/

Chris0516 01-16-17 12:48 AM


Originally Posted by Onyxaxe (Post 19067688)
I have Psychogenic Non-Epileptic Seizures, I wouldn't say they're controlled but I manage

Road bike on the road only. Purely transportation

So far using earplugs and avoiding night cycling where lights are the brightest has worked okay. I never miss an opportunity to improve though and what to know what others are doing since I'm fairly new to road biking for transportation.

These are what I use if anyone else is curious.

https://www.amazon.com/SureFire-Defe...fire+ear+plugs

Thanks.

What are your seizure 'triggers'?

Onyxaxe 01-16-17 06:11 PM


Originally Posted by Chris0516 (Post 19315663)
What are your seizure 'triggers'?

There are four mental states I have to be cautious of. The first being seizures or convulsions, the second being black outs, the third being prolonged panic attacks (these are the hardest to deal with since I'm not always aware it's happening). The fourth being straight up loss of awareness, as in not being able to remember who's around or where I am. All the triggers I've listed below can issue one of these mental states. I've been dealing with them for over 10 years now and can kinda feel when something is off and get myself home in time.

Triggers:

Flashing lights
Stress
Excessive Alcohol
Secondhand Pot Smoke
Loud Sudden Noises
Sudden Loud Noises like gunshots or car wrecks
Threat to my Safety, as in a fight
Prolonged low mechanical noises
Really loud store announcements
Screaming kids (full belting brats, not just normal kid screams)
Fighting Neighbors (as in violent, not just arguing)

If I can keep my everyday stress levels down my sound sensitivity and photo sensitivity go down with it. I have panic disorder and mild agoraphobia too, it takes a lot of composure and rest work on my part to be able to share the road with drivers. Until I implemented stress relief and such I basically lived my whole life in fight or flight mode.

Photo sensitivity includes flashing bike lights, ambulances, police lights and neon signs that flash.

I have autism as well so some sounds bother me while others don't. Things that "grate" with low resonance that continue for more than a few seconds can cause me to black out or convulse on the spot. As can the newer Ambulance sirens that resonate or "whoo whoo" quickly. Fortunately, the sirens that are the worst for me aren't local and I only have to deal with them when someone is coming into the main Hospital from out of town. A handful of times a year so far. There's a new signal on the buses for the seeing impaired that keeps me from being able to use Public Transportation.

With the earplugs I listed, enough noise is reduced that I can get to a sidewalk and assume "seizure" position if necessary while still hearing cars around me. I wear them all the time now so I can have a little leeway with sounds I'm not familiar with.

Psychogenic seizures are a little odd in that once the trigger is gone I can resume activity with only fatigue being the limiting factor. One day I blacked out near an intersection, the second the ambulance was far enough away I got up and walked home like nothing had happened. I may be tired and a little unaware of my surroundings after a few but I can still manage to limp a few miles home.

Chris0516 01-16-17 08:26 PM


Originally Posted by onyxaxe (Post 19317184)
there are four mental states i have to be cautious of. The first being seizures or convulsions, the second being black outs, the third being prolonged panic attacks (these are the hardest to deal with since i'm not always aware it's happening). The fourth being straight up loss of awareness, as in not being able to remember who's around or where i am. All the triggers i've listed below can issue one of these mental states. I've been dealing with them for over 10 years now and can kinda feel when something is off and get myself home in time.

Triggers:

Flashing lights
stress
excessive alcohol
secondhand pot smoke
loud sudden noises
sudden loud noises like gunshots or car wrecks
threat to my safety, as in a fight
prolonged low mechanical noises
really loud store announcements
screaming kids (full belting brats, not just normal kid screams)
fighting neighbors (as in violent, not just arguing)

if i can keep my everyday stress levels down my sound sensitivity and photo sensitivity go down with it. I have panic disorder and mild agoraphobia too, it takes a lot of composure and rest work on my part to be able to share the road with drivers. Until i implemented stress relief and such i basically lived my whole life in fight or flight mode.

Photo sensitivity includes flashing bike lights, ambulances, police lights and neon signs that flash.

I have autism as well so some sounds bother me while others don't. Things that "grate" with low resonance that continue for more than a few seconds can cause me to black out or convulse on the spot. As can the newer ambulance sirens that resonate or "whoo whoo" quickly. Fortunately, the sirens that are the worst for me aren't local and i only have to deal with them when someone is coming into the main hospital from out of town. A handful of times a year so far. There's a new signal on the buses for the seeing impaired that keeps me from being able to use public transportation.

With the earplugs i listed, enough noise is reduced that i can get to a sidewalk and assume "seizure" position if necessary while still hearing cars around me. I wear them all the time now so i can have a little leeway with sounds i'm not familiar with.

Psychogenic seizures are a little odd in that once the trigger is gone i can resume activity with only fatigue being the limiting factor. One day i blacked out near an intersection, the second the ambulance was far enough away i got up and walked home like nothing had happened. I may be tired and a little unaware of my surroundings after a few but i can still manage to limp a few miles home.

wow

Onyxaxe 01-17-17 10:54 AM


Originally Posted by Chris0516 (Post 19317448)
wow

That's how I felt when I was typing all that crap lol.

Chris0516 01-17-17 12:03 PM


Originally Posted by Onyxaxe (Post 19318398)
That's how I felt when I was typing all that crap lol.

Do you mean alcohol, and pot?

SorrySayAgain 01-17-17 08:36 PM

I'm deaf, have arthritis, SPD, undiagnosed chronic pain condition, minimal feeling in my legs, asthma, and non-epileptic seizures.

I have almost no hearing in the range of human speech, and with hearing aids and an FM I can hear very low and high-pitched sounds extremely well (which set off my sensory processing disorder). So I generally either ride without my HAs or I play music through them to help me focus and to reduce horns and brakes.

Even with my hearing aids, I cannot determine direction of noise. This is because of the type of deafness I have. All noise comes in at the same volume, making it very hard for me to identify where a noise originated.

For my arthritis and chronic pain, cycling is better for me than walking due to it being low impact yet high-intensity.

I have almost no feeling in my legs (a result of surgical complications) and so walking can be dangerous for me.
For me, it's like when your legs are 'asleep'. You can feel things if you do MAJOR damage, but generally you can't, so you've gotta be very aware of where and how you walk so nothing gets broken.

I have to walk with a cane, because I twist my ankles and trip so frequently without it, and if I hit the ground it's an automatic hospital trip for me as the jarring paralyses my legs.
Cycling is great, as I can keep my feet on the pedals and move pretty well. (It's amusing to see people's faces when they see me pull up on a bike and get out my folding cane to walk around with.)

My seizures are triggered by allergies, over-exertion, extreme stress/anxiety, and I've never yet had one while riding.

My asthma is more than manageable, except when there's excessive air pollution. I don't ride those days.

Onyxaxe 01-18-17 10:43 AM


Originally Posted by SorrySayAgain (Post 19319602)
I'm deaf, have arthritis, SPD, undiagnosed chronic pain condition, minimal feeling in my legs, asthma, and non-epileptic seizures.

I have almost no hearing in the range of human speech, and with hearing aids and an FM I can hear very low and high-pitched sounds extremely well (which set off my sensory processing disorder). So I generally either ride without my HAs or I play music through them to help me focus and to reduce horns and brakes.

Even with my hearing aids, I cannot determine direction of noise. This is because of the type of deafness I have. All noise comes in at the same volume, making it very hard for me to identify where a noise originated.

For my arthritis and chronic pain, cycling is better for me than walking due to it being low impact yet high-intensity.

I have almost no feeling in my legs (a result of surgical complications) and so walking can be dangerous for me.
For me, it's like when your legs are 'asleep'. You can feel things if you do MAJOR damage, but generally you can't, so you've gotta be very aware of where and how you walk so nothing gets broken.

I have to walk with a cane, because I twist my ankles and trip so frequently without it, and if I hit the ground it's an automatic hospital trip for me as the jarring paralyses my legs.
Cycling is great, as I can keep my feet on the pedals and move pretty well. (It's amusing to see people's faces when they see me pull up on a bike and get out my folding cane to walk around with.)

My seizures are triggered by allergies, over-exertion, extreme stress/anxiety, and I've never yet had one while riding.

My asthma is more than manageable, except when there's excessive air pollution. I don't ride those days.


I can relate to most of that. Maybe this thread is helpful :). That loss of feeling in my legs cuts off and on for me. When I mentioned the collapsing, the legs basically give out under me. I'm fully conscious most of the time this happens and I'm left to figure out how to get around without my legs working properly. I can't count how many times I've had to crawl through the house. Like you though, it's not as much of an issue while biking. It seems I can kinda grit through the desire for them to quit working.

Onyxaxe 01-18-17 10:43 AM


Originally Posted by Chris0516 (Post 19318535)
Do you mean alcohol, and pot?

No lol. Meaning it was hella long. I don't have to explain all of it at once very often. Believe it or not. I tried to keep my post short.

Chris0516 01-18-17 11:47 AM


Originally Posted by Onyxaxe (Post 19320560)
No lol. Meaning it was hella long. I don't have to explain all of it at once very often. Believe it or not. I tried to keep my post short.

Okeydokey

SorrySayAgain 01-19-17 05:22 PM


Originally Posted by Onyxaxe (Post 19320559)
I can relate to most of that. Maybe this thread is helpful :). That loss of feeling in my legs cuts off and on for me. When I mentioned the collapsing, the legs basically give out under me. I'm fully conscious most of the time this happens and I'm left to figure out how to get around without my legs working properly. I can't count how many times I've had to crawl through the house. Like you though, it's not as much of an issue while biking. It seems I can kinda grit through the desire for them to quit working.

Yeah, I've fallen at home often enough that my response to it is just annoyance, not fear or pain.
But I hate falling down the street, mostly from the social anxiety. That makes me stress, extra stress can bring on a seizure, more people stare, rinse and repeat =/

It's very rare I lose consciousness during a seizure, because mine aren't from the brain misfiring like epileptic people's are; mine are from the muscles and nerves going into some weird feedback loop caused by the hormone produced by stress (can't remember the name right now).

It's really hard to explain, but you're right. While biking, it's easier to move past the point where my legs are going to give out.

abledbr 01-27-17 03:39 PM

As i mention i have Poland's Syndrome and Moebius Syndrome. On the Poland's Syndrome side. It affects my right peck which is missing, curved spine, lower back pain due to right side of body being lopsided and thinner than the left. Small right arm and small right hand and deformed. And other associated disability's. Moebius side. Inability to smile on the right side due to nerve and muscles. Right eye goes up and cant move my eyes left to right or up and down. I am hearing impaired in both ears.
Both disability's are very rare and some people with Poland's don't even know they have it.

Despite the pain that my disability have brought me i have tried to live my life and i had worked for awhile but had to stop due to the disability.


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