I am Sam . I'm 37, living in the UK with an incurable rare disease called Charcot-Marie-Tooth disease. As a result I use a powered wheelchair almost full-time.

Fire all the questions you always wanted to ask a disabled person but never felt like you could! No question is out of bounds.

PROOF: Genetic Testing letter confirming diagnosis...

https://www.facebook.com/1191105731029111/posts/1512368835569464/

Comments: 456 • Responses: 56  • Date: 

Behindmyspotlight750 karma

I work in theatre management and design, in educational spaces (high school theatres/auditoriums). When you're in any venue (auditoriums, stadiums, gymnasiums, churches, museums, etc.) what are the things that we as venue managers, and as venue designers can do to make the space better for you?

Also related, what do the arts mean for you? Do you like to participate, spectate, both, neither?

CMTerSam476 karma

Thankyou for your question.

I have certainly had mixed experiences in public venues such as theatres, auditoriums and conference spaces. I'll bullet point some of the feedback I frequently experience:

  • In seated layouts; please ensure that seating/platforms allocated for wheelchair users are positioned so that their view isn't obstructed when all the patrons in front stand to have a boogie or otherwise express themselves (I'm thinking concerts here).

  • On a similar thread, please ensure that there is adequate space for each chair user AND that their is seating in the same area for a carer or accompanying companion or 2. It really sucks to be sat along with your entire family sat in the row in front of you.

  • Toilets; please realise that are many adult disabled folks who are unable to use a conventional disabled toilet and instead require hoist facilities and a full sized changing table. (See www.changing-places.org )

I think these are my most obvious ones that come to mind.

P.S: I have a casual interest in the performing arts, musicals and similar, but my love of arts lies with painting, sculptures and the like. I dabble with both myself.

angry_pidgeon460 karma

Not op but my partner uses a chair, most cinemas put the disabled seats right at the very front of the room making it very hard to look up with a headrest attached.

I have been to one cinema where the entrance came in halfway up the seats so the disabled area was in a slight platform allowing them easy viewing without tilting their heads up.

The other thing is dropped curbs, even though I've been pushing my partner in her chair for years when I'm not with her I don't think about their locations. Far too often I have to push her into the road because they aren't in the right place.

Thanks for taking the time to ask the question

CMTerSam178 karma

Thankyou for adding your thoughts. Well commented.

Cynyr36271 karma

How annoying are shitty curb cuts? What most annoys about your chair that you wish you could change? What features would you add?

CMTerSam264 karma

Commented like a fellow wheelie! (I presume! ).... oh yes curb cuts, or dropped curbs as we call them here. Shitty ones, or even totally absent ones are the worst!

CMTerSam242 karma

P.s... apologies for missing the questions about my chair!

Most annoying thing.... probably the time it takes to tilt and recline (and especially to return to an upright position once I want to move locations! )

Feature wistlist.... elevating leg rests plus iLevel (the whole seat rising to put you at eye level with those around you )

Cynyr36103 karma

Nope (fortunetly), just a mechanical engineer that somedays wishes I had the biomedical background to get into things like wheelchairs and prosthetics. It's not really side hustle sort of work.

I've had some experiences with shitty dropped curbs on my push bike, but at least I can get off and walk or just bunny hop up. I can't imagine how frustrating it would be otherwise. There was an episode on 99% invisible about the start of curb cuts in California in the 60's(?).

At least in most of the UK, you don't get snow like we do here in the mid West, USA. 60+ inches a year here.

CMTerSam25 karma

true indeed (snow)

Tiziel243 karma

What is something it's okay to spontaneously invite a wheelchair user to, which most people don't realise they can spontaneously invite one to?

CMTerSam450 karma

ANYTHING! The worst that can happen is we say no. It is far worse to NOT be invited in the first place.

mvdiz88 karma

I'm not I'm a wheelchair, but have several chronic illnesses. It's really shitty to not be invited just because I can't go very often. Having health and physical challenges that people don't often understand is isolating enough-it's even harder when you're home alone most of the time.

lolabarks51 karma

Yes, thank you. My fucking family doesn’t even invite me places “because I might cancel.” Seriously screw these people.

CMTerSam19 karma

I'm sorry that happened to you

halcyondazed87181 karma

Is there something you hate being offered help with?
Is there something you wish people WOULD offer you help with?

CMTerSam293 karma

Hate... people thinking they can push my wheelchair and move me without asking. Otherwise there's no bad thing to offer so long as you DO offer first and dont kust take it upon yourself to "help" without permission.

Not sure I'd want people to offer more. It can get a little tiresome saying "no thankyou" all day if you don't need the offered help lol. What is more important is willingess to help if ASKED.

_Alabama_Man88 karma

people thinking they can push my wheelchair and move me without asking.

People really do that often enough for it to be mentioned? I would think that's assault for someone to control/push you without being asked. If someone grabbed me from behind and moved me against my will I would be livid! Maybe someone can design a rear facing water spray to communicate "NO!" to those bullies that would push someone else around without their consent. If it happened often enough I'd rig metal connectors into the handles that run to my battery for a more shocking reminder. I am still trying to wrap my head around the fact people would do that to another person.

CMTerSam117 karma

Short answer... YES it happens.... Too frequently. I also get people using me as a leaning post when we're in a queue.

CMTerSam108 karma

APOLOGIES, I NEED TO SHUT OFF FOR THE EVENING NOW. I'LL CATCH UP WITH ANY UNANSWERED QUESTIONS TOMORROW.

Good evening folks!

YANMDM14 karma

CMT runs in my family! My great grandpa, my grandma, aunt, uncle, and some cousins have it. It skipped my dad (presumably as he is nearly 70 with no symptoms). I talked to a geneticist when I didn’t know if my daughter could be at risk (she can’t be).

Do you have a family of your own? Did you contemplate whether to have a family or not? When did it start manifesting for you? What were your worries when you found out? What is not as big of a deal as you might have thought?

CMTerSam14 karma

I do not have children, no and I do not want children. That decision is not related to my CMT status though, I simply don't want kids lol.

I started feeling lie I was lacking physically in late primary school I think, although at the time just though it was "rubbish".

When I found out I had CMT I wasn't upset or shocked to begin with, my obsessiveness took over and I spent the WHOLE WEEK researching, reading through very limited literature online. Printing and printing and printing lol .... I don't fully remember but I think I took it pretty darn well. It felt like a big realisation, like the last puzzle piece slotting into place to explain so many thing that had happened to me.

Erm, surgeries are probably my answer to your last question. Yes they ARE ALWAYS a big deal but I've got used to them now and am never nervous.

Thankyou for your questions!

walls703107 karma

What is the most challenging part of navigating public places? and...How fast can you get that bad boy going?

CMTerSam164 karma

Thanks for your reply! Last question first... 4mph! Plenty fast enough for pavement use, but not the fastest powerchairs can go. I THINK the fastest is 8mph, but I may be wrong.

The MOST challenging part of navigating public places.... inaccessible shops and services despite UK laws setting out accessibility standards for retailers to follow.

The other challenge is vehicles parking / blocking pavements. This can result in taking lengthy detours jusdt to get from a to b

therealgodfarter40 karma

How does the powered wheelchair deal with changes in pavement level, those slight curbs and dodgy paving? I have had a family member almost fly out multiple times from their manual chair because of shit pavement/tarmac etc.

CMTerSam45 karma

I find that traction tends to be a little better in powerchairs but that is just my experience. There are certainly trouble terains... gravel, wet grass, cobbles and such

Protego_12311 karma

Which shops in particular do you find the worst? I've always thought Poundland/Savers and charity shops to be pretty tight to get round even as a non wheelchair user.

I regularly see people in wheelchairs sat outside shops in my local shopping centre while a relative or carer goes in for the shopping. Always found that very weird.

CMTerSam10 karma

WH Smith's, The Works .... both guilty of cramming extra stock in the isles

Henry-Black78 karma

Oddly specific...

Who is your local wheelchair service provider? What's your experience like with them?

CMTerSam103 karma

Thankyou for your reply. My local wheelchair provider is my local NHS Wheelchair Services Clinic here in Yorkshire, UK. I have found them great and have been lucky to have my needs met at every stage of the the process.

Henry-Black38 karma

I work in WCS, so I have a nerdy interest in it. It's sadly quite the postcode lottery... especially around Yorkshire. Especially around Hudds.

CMTerSam31 karma

Ah!, in what role? (if I may ask) .... I'm under the Airedale Foundation Trust. Not everyone is as lucky as I have been, and that is frustrating.

bobs_aspergers50 karma

On a scale of 1 to 10, how annoying is it when people talk louder or slower at you because you're in a wheelchair?

CMTerSam74 karma

100! lol ... or they talk to my wife instead of me

angel_heart6946 karma

Hi! At risk of sounding insensitive - how do you feel about having CMT1A?

CMTerSam59 karma

Don't worry! I do not mind having CMT for the most part. I've slowly worsened throughout my life so I guess I've had time to adapt?

angel_heart6946 karma

I have CMT2A so I was just curious about your perspective.

CMTerSam53 karma

How do YOU feel about it? x

angel_heart6948 karma

I knew something was wrong but wasn't type diagnosed till last year. At almost 22 I'm learning to read my body and figure things out, with everything that entails. I'm working on covering up my surgical scars with tattoos. The Achilles Tendon lengthening failed lol.

CMTerSam44 karma

I'm sorry to hear about your failed surgery. You sound like you are doing really well coming to terms with your diagnosis.

angel_heart6922 karma

I am actually. Making moments when I can with people that matter. Breaking rules - like not wearing my leg braces lol. Do you have any kind of cushioning on your chair?

CMTerSam6 karma

I have a Jay Comfort backrest and seat cushion

OnlineShoppingWhore46 karma

Hey there!

Is dating and physical intimacy difficult? Do you use online dating apps? How has your experience been?

(I hope I haven't offended you with my questions!)

CMTerSam83 karma

Of course, no offence taken! I am married AND asexual so not the best person to ask though lol.

I met my wife at work, whilst I was still a "walker" although it wasnt too long before the wheelchair arrived on the scene.

Sylaethus44 karma

This looks to be something recent you found out. Was this something you’ve “always known”, what were your symptoms that lead you to find your diagnosis? I live in the USA, and work for the biggest hospital in my state, but curious to know how the medical system works in the UK. Was it a challenge to find your diagnosis? How long did it take to get your answers?

Sorry for all the questions. Ha. Also, hello from a fellow Samantha!

CMTerSam59 karma

Hello and thankyou for your question!

No, not something I've recently found out. I was initially diagnosed aged 5, although I was not told by my parents until I was 16. Initial diagnosis was obtained by the taking of a family and full medical history, in addition to Nerve Conduction Studies (electric shocks alog the affected nerves to measure the speed of the signal). From this they were able to determine that I had CMT type 1. It wasn't until 2011 however when my exact subtype was determined with a blood dna test. This revealed Type 1a.

I was too young at the time of initial diagnosis really to realise much of what was going on.

HippyFoodPeaceRD25 karma

How did your parents break the news to you? Do you know why they waited until you were 16 to tell you?

CMTerSam30 karma

There is no wrong or right answer to this, in my opinion anyway. In my personal experience I had a lot of hardship in my formative years at school as a result of not knowing my CMT status.

  • Inability to keep up with copying down notes from the blackboard (showing my age now lol).
  • Sent for "handwriting classes" in my lunch break because my handwriting was scruffy as fook (because of above)
  • Frequently reprimanded for not getting dressed after sports fast enough (could not do up buttons on my shirt, or put on tights.
  • Always picked last for teams in sports and/or came last in running events.
  • Struggled to maintain handwriting ability in formal exams leaving me with comparatively low results compared to if I had received a scribe, extra time, or a break for example
  • Maybe bullying because of the above would have been less.

Anyway, either way, I feel that I would have benefited from some support and leeway. I'm certainly not saying I should have been let out of sports, or not had to participate in classes. To the contrary, I imagine a childhood where the teachers were fully informed of my physical abilities, where I was encouraged and not reprimanded, where I was supported through struggles.

It's a balance to get right, that's for sure, and I feel that it was not got right for me.

Do I resent my parents? If I'm honest then I do, just a little, but I know they did what they thought was best for me at the time and we still have a good relationship now I'm an adult.

Thankyou for your questions!

Sylaethus7 karma

I see. I understand the wait for maturity for something that big to land in your lap. In honest opinion though, do you feel as though they should have told you sooner? Do you hold any resentment to that? In an unrelated way, and from your personal experience: what age would you feel is appropriate to learn oh heavy medical information?

CMTerSam9 karma

There is no wrong or right answer to this, in my opinion anyway. In my personal experience I had a lot of hardship in my formative years at school as a result of not knowing my CMT status.

  • Inability to keep up with copying down notes from the blackboard (showing my age now lol).
  • Sent for "handwriting classes" in my lunch break because my handwriting was scruffy as fook (because of above)
  • Frequently reprimanded for not getting dressed after sports fast enough (could not do up buttons on my shirt, or put on tights.
  • Always picked last for teams in sports and/or came last in running events.
  • Struggled to maintain handwriting ability in formal exams leaving me with comparatively low results compared to if I had received a scribe, extra time, or a break for example
  • Maybe bullying because of the above would have been less.

Anyway, either way, I feel that I would have benefited from some support and leeway. I'm certainly not saying I should have been let out of sports, or not had to participate in classes. To the contrary, I imagine a childhood where the teachers were fully informed of my physical abilities, where I was encouraged and not reprimanded, where I was supported through struggles.

It's a balance to get right, that's for sure, and I feel that it was not got right for me.

Do I resent my parents? If I'm honest then I do, just a little, but I know they did what they thought was best for me at the time and we still have a good relationship now I'm an adult.

Thankyou for your questions!

aestherisms31 karma

Do you ever get frustrated when you see able-bodied people being lazy or not taking advantages of opportunities to do things you no longer can?
How do you like your eggs?
If you could go back to 16 when your parents told you, what would you tell your younger self about your life? Your future? How things go from 16 on out?
And finally--sorry for so many questions!--what is Charcot-Marie-Tooth disease? I've never heard of it before, and would love if you could tell me from the perspective of someone that has it, versus a web-md article.

CMTerSam9 karma

Mnemia, thankyou for your detailed reply! I'll add breathing and swallowing complications, fatigue and pain to your description.

aestherisms... Yes, sometimes Fried I'd go back further to ensure that I was told earlier to allow me to better cope with my childhood and adolescence (I address this topic more in another comment if you are interested)

I hope you do not mind if I address your last question with a link..... https://www.thecrippledcrafter.co.uk/2015/09/table-of-contents-awareness-month-2015.html

That link takes you to my blog, all written by me in my own words. I want to make sure you get a full answer so this should do that.

Thankyou for your question!

XGnome27 karma

Would you mind talking about your transition from being able to walk to being in a wheelchair? As a fellow CMTer, I'm a fairly avid runner and get around pretty well, but I'm concerned about the degradation of my mobility as I head to 40.

Thanks for taking the time to answer these! As prominent as CMT is, I feel like it's still wildly unknown.

CMTerSam3 karma

Hi there! I'm very glad that you are still able to be so active. The general consensus is to stay as active as your body allows. I understand your concern but it sounds like you have CMT mildly (apologies now if I have assumed wrong). Yes you will notice gradual, slow progression of your symptoms but with careful management you should be able to stay reasonable active.

Orthotics, physio and good selfcare can all help you.

Now to actually answer your question! For me I "walked funny" for many many years, losing the ability to run in my mid/late teens and starting to use a walking stick aged 22 or 3 (I think!). The walking stick progressed to crutches, and I added a wheelchair for occasional use in my mid/late 20s. I got my first powerchair about 6 or 7 years ago (I think!) which I did not really use much indoors to start. I gradually switched to "almost full-time" use 2 years ago.

Thankyou for your question!

Black_n_Neon20 karma

I also have type 1A though my neurologist says it’s a mild case (sometimes it doesn’t feel that way)

At what point did you become wheelchair dependent? What are some things you wish you would’ve done when you were younger?

CMTerSam23 karma

I have used a wheelchair more and more for the last 8 or so years I think. And I had a pretty good childhood with lots of opportunities sooooo..... snorkling maybe??

epictroll518 karma

Do you want to or are you able to rev it like a motorcycle?

CMTerSam15 karma

Nope, and nope! 😂

ruiner3216 karma

What do you got for wheels? I’m a wheelchair provider in the states, an I’m curious about the market overseas

CMTerSam20 karma

I have a Quickie Salsa M2 with Jay Comfort cushion and backrest

ruiner325 karma

Awesome. Quickie is an American company, but I can’t get the Salsa! I really could use some more rear wheel drive options. Thanks man!

DiagnosedFuckTard5 karma

Never have liked rear wheel drive, we rarely sell them unless it’s a.m bariatric chair.

As a tech I’m a huge fan of Permobil, you guys sell many in the states?

-Canadian tech.

hat-of-sky8 karma

My husband (quad since childhood from SMA)finally got rid of his midwheel drive chair and back into a rear wheel drive. It's so much better on bumps that we're realizing he's been extra-disabled by a bad chair design for the past decade, so much that he'd stopped leaving the house. The midwheel one made it almost impossible for him to use his lip-joystick safely outdoors, despite our provider saying they were so much better. And once you've spent so much time and money on getting a chair it's not easy to start over. So you might not like rear-wheel, but I hope you'll still consider it for a person who can't handle bumps.

CMTerSam5 karma

Interesting viewpoint! I myself dislike rear wheel and much prefer midwheel for maneuverability. Turns on a dime. Rear wheel is superior when it comes to rough terrain though

NaNaNaOkay13 karma

What would you say is one of the biggest challenges you face everyday? Is there something you dread doing everyday? If so, what is it? Thank you!

CMTerSam45 karma

Thankyou for your reply. Biggest daily challenge.... fighting fatigue has got to be the winner there. My condition comes with a ton of muscle AND generalised fatigue and this generally means days spent meticulously planning with rest breaks included just to complete minor tasks around the home or with regards to personal care (example... getting out of bed, going to the loo, then getting dressed = mandatory half hour sit doing absolutely nothing to recover.

What do I dread? Bath/shower days. I shower every 3 days. I'm not able to manage more frequently than this so strip washes are on the menu inbetween days. Anyways, showering/bathing are my big dreads simply because it is painful and exhausting .... I do love that clean feeling afterwards though!

NaNaNaOkay13 karma

Thank you for replying, I have one more question if you don't mind. Do you work? If so, what do you do career wise?

CMTerSam23 karma

Hello again and of course I don't mind! No I do not work. I took medical retirement in 2011 from a building society (a type of bank) where I was manager of a team of software testers.

ratsintheattic12 karma

As a fellow Brit, I feel a weather related question is suitable! Do you experience issues when we have bad weather such as heavy rain and snow, and what are these?

Also, do you have any fun personalisations to your chair?

CMTerSam4 karma

Haha, we do like talking about the weather! In terms of my health, the cold and heat both exacerbate my joint pain so a nice middling temp is good lol.

In terms of my chair, rain isn't an issue providing I'm sufficiently wrapped up in waterproofs lol ....

Snow, I don't usually bother going out in as my chair can lose traction easily on ice and snow.

Thankyou for your question!

kyrajane2129 karma

When I’m in a conversation with somebody in a wheelchair - is it more polite to “kneel” down to their eye level or look down to them to speak? Both feel awkward - only because I don’t know which is preferred! Thank you!!

CMTerSam20 karma

Hades9756 has answered perfectly so I hope you don't mind if I take the lazy way out and leave you with their answer 😉

danethegreat249 karma

Hi! Half my family suffers from CMT! Though they have a version that thankfully is slower than the others.

My question (though it may be asked) is part I: did you see this in other members of your family and part II if you found out later, are you/were you going to have kids?

CMTerSam12 karma

Thankyou for your question. I am adopted so the only one in my family with the condition.

I do not want children... But not because of my CMT

danethegreat246 karma

Cool, thank you for the response. I'm going to say this because strange coincidence, but I'm also adopted and from the UK (Scotland) but I was adopted by my aunt on my mother's side.

CMTerSam3 karma

You're welcome, and hi fellow adoptee!

Serial_Buttdialer8 karma

What's your favourite hobby?

Is there any hobby you really want to try, but haven't yet?

CMTerSam6 karma

Crafting! or Star Trek! ..... or Crafting whilst watching Star Trek? haha!

Thankyou for your question!

OutrageousMatter8 karma

How come you get a power wheel chair instead of a normal wheelchair?

CMTerSam15 karma

I do not have the upper body strength to be ableto self propell a manual wheelchair, hence why I have a powerchair instead. Thankyou for your question!

Mnemia8 karma

What do you do for exercise or physical activity? I’m almost your same age and also have CMT, although I don’t think mine sounds nearly as bad as yours (I wear AFOs but do not use a wheelchair). I imagine that it’s more challenging to get adequate cardio exercise in your case. I’m also an unknown type genetically, so probably not exactly the same.

I’ve taken up weight lifting in recent years and honestly I feel like it has done more for managing my symptoms than anything else I’ve tried. I can’t gain muscle bulk or tone much below the knee but I can in my arms, core, and upper legs. Having stronger muscles in the places I can gain strength has done a lot to stabilize my gait issues and reduce overall fatigue, I’ve found. It’s not a “cure” as it can’t reverse the progression but it does make me functionally more able to do things I want to do. There are some things I probably won’t ever be able to do (like squats, due to the balance problems and muscle contracture issues in my heels), but I can do some stuff like leg presses just fine. But everyone is different because CMT can vary so much from case to case.

CMTerSam3 karma

Kudos to you for being able to keep more active. You are right, CMT doesn't half vary! .... I confess to having a bit of a lazy personality so probably don't help myself, but despite this I do not have good core or upper body strength either, due to scoliosis (curvature of the spine)

thankyou for your question!

JustinisaDick5 karma

What is CMT?

CMTerSam3 karma

CMT is short for Charcot-Marie-Tooth Disease. The name cones from Drs Charcot, Marie and Tooth who all described the condition for the first time in the late 1800s

CMT is an inherited neurological disorder affecting the peripheral nervous system , primarily the legs/feet and arms/hands. The condition causes bone deformity in the feet and hands and affects mobility, balance and sensation.

I hope you do not mind if I signpost you to a link for more details and personal insight ..... https://www.thecrippledcrafter.co.uk/2015/09/table-of-contents-awareness-month-2015.html

That link takes you to my blog, all written by me in my own words. I want to make sure you get a full answer so this should do that.

Thankyou for your question!

fyodor_mikhailovich2 karma

Are you Red or Blue?

CMTerSam3 karma

Thankyou for your reply. Blue.... I think?!

fyodor_mikhailovich2 karma

City I hope ;)

CMTerSam2 karma

haha... well in that case neither. I am soooo not a sports person

colossuskidd-7 karma

Isn’t CMT the country music television?

CMTerSam6 karma

lol... it is. However it was the name of my disease (Charcot-Marie-Tooth) way before tv lol

PurpEL-7 karma

Country Music Television?

CMTerSam2 karma

lol... it is. However it was the name of my disease (Charcot-Marie-Tooth) way before tv lol

Zootropic-15 karma

K … aaaaaaand then?

CMTerSam4 karma

zzzzz

KitchenBlockChain-30 karma

Hi sam, how do you take it up the ass?

CMTerSam12 karma

I don't. How about you?

pineapplefantasy-40 karma

No question is out of bounds.

are you one of those deeply immoral disabled people that thinks its your god given right to reproduce while carrying a disease your child can inherit?

what is your opinion on forced sterilization of disabled people whose conditions can be inherited by their children, or result in the children having to care for their parents?

does a child have a right to not be born with CMT or any other similar disease?

CMTerSam20 karma

I am not going to upvote or downvote you for this question as I did indeed invite any questions. That said, your wording leaves much to be desired.

I do not have children nor do I want children, but that is NOT because I have CMT.

I believe that all people, healthy or otherwise, have the right to terminate a pregnancy if they feel their circumstances are not conducive to bringing up a disabled child, or indeed any child. Equally, I feel those same people have the right to have and raise a child, disabled or otherwise, regardless.