Wheelchair Users

@PeppermintSnowflake I know this thread is a little old, but I. Just finding it. I'm a part time wheelchair user. Ehlers Danlos Syndrome and chronic pain make it hard for me to walk more than 1/2 block.

@cirlces8 that must be very frustrating for you. :-( If you ever want to chat feel free to look me up on here.

Donald K

T-10 Spina Bifida here.

spinal muscular atrophy type 3

I have been in a chair 31yrs this year. It is a hard lifestyle but for me it is a LIFEstyle. I don't see my chair as a punishment but as a tool. For those who are full ,part time, manual or electric chair users... the chair does not define you although it is a huge part of your lifestyle..it's you who ultimately defines you. I'm in a chair..but I am so much more that JUST that.

i have been ina power chair for only 4 months, but its me for the rest of my life.

If only i could wrap my brain around that i would be a much calmer individual.

@Lovedone its very new and it takes time to adjust to such a big life change. It perfectly ok to not be "calm" yet..give your body and brain the time it needs to settle. Its a difficult but doable process. Love.hope n prayers

@Justhere2listn

I'm scared.

My spine is compressing, which means that I have fractures in it, which means it will most likely kill me one day down the

line, & I am so damn scared.

~S~

@Lovedone I am truly sorry you are going through such a frightening issue in your life. I do understand why you are afraid and to be completely honest I get scared too. We all have issues but face our mortality in such a absolute and undeniable way is terrifying. I have been facing mine for many years but since 09 mine has also become an inevitable process that I simply cannot do anything about.

That being said.

I try very hard remember one key thing. Its something I can do absolutely Nothing about. But...I can choose how I live until then. I get scared. I cry like a baby sometimes cus its fucking hard. Sorry to whoever censors this but there is no sugar coating it.

I am currently in a very long very hard battle to get surgry that will give me a bit of time to keep up my life with dignity if I can ever get it done. Until then I am in a nursing home n I am Not the dependant type. Not in this sence anyway.

My only saving grace is..it will get done I trust that cus I won't stop fighting to get it done.

@Lovedone its not over until its over or you give up. Don't give up. Its ok to be afraid. Its ok to be anything in terms of how you feel about ur situation but LIVE IN THE WAY YOU WANY NOW as much as you can. You have nothing to lose but the chances to experience all you can while you can. Do.

I have told alot of people this throughout my life. Most look at me like she's totally nuts. Yes I am. I am totally nuts enough to Live. Before I die. I have too. I wpuld not change one thing. Even the most diffuclt parts are for a reason ..part of the experience. The lessons.

I might be rambling but I do that when this topic comes up. I face it everyday...every minute of everyday...its part of my life.

Prayers..love, positive energy...to you n anyone living with the same issue...

But Live while you can...use the time you have..its all we get.

@PeppermintSnowflake I'm so sorry that I am just now getting to this. It is awesome that you are wanting to help in this way, I really appreciate it. I created the disability community forum because I wanted us to have a voice. It is awesome that you seek independence outside of the house.

I would really appreciate you keeping track of each forum that interest you, it could really help me out. I am glad to be back though :-)!

I use wheelchair p/t, I have problems walking in

I use a manuel wheelchair part-time outside of the house. It's hard for me to use it sometimes because my arms tire easily, I haven't figured out non-automatic doors yet, usually someone helps me or I stand and push the chair through myself. Feel free to PM me too!

@sunnytea. I have a hard time to with manual too. Mostly outside my house, like grocery shopping and places where alot of walking is required, my husband and children are good about pushing when my arms tire, I try to to be independent as possible, but I get depressed because some days I can hardly walk ,without feeling weak ,I have 9 yr old twins, most days are ok

I'm using a manual wheelchair myself since I've left hospital around early May this year. I have to admit that it can be really tiring even though I've been quite sporty and such to use the manual wheelchair all day long but in the end I really enjoy that it's a lot more flexible than an electric one.

But there are quite some things I still need to figure out when it comes to using my whelchair. Like, I still have problems with a lot of doors of public buildings, not to mention stairs. But I'm sure one day I'll figure both of them out.

I have been using a manual chair since 1985 and was 14 wehen I became a paraplegic. In the 30+ years I have lived in 7 states had 2 children naturally..been alot of places and done alot of things that I never dreamed I could in a chair. Its hard but its also a process of finding the best ways for YOU to use the chair as a tool and asking for help with dignity when you need to. Ie w doors and pushing when you get tired. There are also little tricks n tips I have either been taugjt or learnwd on my own over the years. I'm at the point of needing more help grom overuse amd will need to make some difficult decisions regarding what I need to do to minimize the progression. But there are options. If anyone wants to pm me feel free. N good luck prayers n positive energy to all

@Justhere2listn Thank you for your message it was very moving. I'm happy to hear you have a family of your own. I would like a family of my own someday. I will PM you sometime tomorrow because I'm going to bed soon… In fact I should already be asleep… LOL.

Donald K

@Justhere2listn

Wow, sounds like I could learn heaps from you but sadly I cannot PM you as you're only able to listen to adults :c
Your story up until my age sounds quite similar as I'm 17 now and became a T9 paraplegic some time in January this year, when I've still been 16.

Do you have some kinds of recourses or a good description of the best tips and tricks you're offering? I guess I could definitely need some of them if I don't know them already. I'm still quite goofy sometimes, when it comes to handling my wheelchair/disability. For example doors, stairs, rough paths and carrying stuff are just some thing that I'm still trying to figure out. At the end of the day I'm always abl eto do what I wanna do but I know that there must be an easier and less complicated way to do things c:

If you're comfortable answering, what were some of those things you were doing that you couldn't have imagined to be able doing in a chair? I'm searching for activities that I can do to still get the amazeballs feeling to have tried out something new and even better if it doesn't seem like I'd be able to do them :p

@FearTheWild hi as far as questions fire away. A couple tios f I r carrying things.. I have a pouch with 2 large pockets that zip n one small one that also zips that I have attached under my seat so I can put my check book some tools ie alen wrench miltisize wrench n 7in 1 multitool w a screwdriver n knife (to work on my chair), a wallet w credit cards ,id, medical cards n important business cards and under that I have a shelf for cqrrying larger things like bottles of water n books. I would have to look up the info on the pouch n shelf themselves but I got them from a man who makes them specifically for wheelchairs. He did tell me they were not specifically designed to be used tge way I do but..it works and I suprize everyone who notices with tge amount of stuff I can carry. The other thing I use is a good backpack with lots of pockets and always remember to secure the bottom so it doesn't sway when doing wheelies lol. One of my sayings is..where there's a wheel theres a way n if there's a way I wheel find it.

My biggest tip honestley is...use your imagination and do what works for you.

I will try to get to the tags n labels n post the info asap. I don't know what I would do without my bag n shelf.

@Justhere2listn

Please excuse my late reply. My internet connection isn't all that great and I might just go without internet for a couple days. So, I'm sorry for that.

Those puches and shelves and stuff sound great. I might search for somebody doing exactly those things for wheelchairs here, too. I usually carry around my stuff in my school bag which, eh, isn't all that great to deal with. It's bottom is already quite done and soon it won't exist at all anymore, haha. Because of that I've started to just carry it on my lap all the time but that isn't quite handy either. So, I really look forward to finding somebody designing those things for wheelchairs.

Thank you for the info so far c:

Hey guys,

as I said at the bottom I should already be asleep… I have a quick question though. You guys like me and hate it when people don't watch where they are going? :-)

Donald K

@DonaldK

Ugh, I totally hate that! Especially in school it's like a huge game of dodging other people for me because most of the just never watch where they're going. That can be super frustrating sometimes when they're just so ignorant of their surroundings. It's been even more of a struggle when I've even had a hard time just using the wheelchair, let alone pay attention to and dodging them.

@FearTheWild

Hey fear of you have a set schedule in scholl pick a route try to make it something of a routine for you and the people surroumding you. It might take a little while but you would be suprized at how the people aroumd you will adapt to you if the become familiar with it. If ya ha e amy friends or classmates who can go alomg..I used to call them my lead team lol..have them go just ahead of ya n clear ur way. Do it everyday..same way..same time..n yeah its kimda like trainin a dog..they will start leaving ir route open.lol

Another trick...for going around corners without slowimg down. .. as you come to about 3ft from the turn reach out n put ur hand on the wall when you are ready to turn push ur hamd on the wall.. be carefull cus you will whip around the corner. I suggest trying to fimd a place where you can practice..its all in the timing.

To amswer the 1 gueation you directly asked. Thimg I habe done I neber thought I would. That would take quite awhile to list them all but a few are...travel across country in a car for a month...get free rides at carnivals..ride a horse in the mountains..camp and white water raft w my dad in the mountains. ..live in and have 2 children in Las Vegas. there's tons more..but point is. Its a tool you just have to learn to accept n use it to do what you want your way.

@Justhere2listn

The routine stuff sounds like people would already expet me to be there. But we barely ever have the same classes each week. Our classes barely follow any routine, so it'd be impossible for me to make up any routine for me as I need to be in different parts of the school every day. The bulldozer team in front of me sounds great tho. I'll try making my friends clear my way for me and see how that works :3

Yo, that sounds like a lot of friggin fun to race around corners. I should probably train that a few times first though and I dunno if that's quite applicable for school. I don't wanna run over people, lol.

Wow, you#ve done quite a lot and managed to have a family now. Awesome, you really give me hope to still have hella fun despite the wheelchair and my disability. I mean, rafting, driving across the country and camping sure sound rad, gotta try those things some time :D

Thank you so much, you relaly motivate me and show me that it indeed is possible to just live life c:

@DonaldK. Definitely, but I am getting better with just remembering some people are just rude and me getting upset doesn't change them

@DonaldK

Honestly?

I find it funny sometimes..but I am known to yell..Hey EXCUSE ME!! Too. But we unfortunately are usually at a level that is not in tge natural line of vision or even t he parifferl vision. In high school I took the same route everyday and after awhile everyone expected me to be on a particular place at a particular time n knew that I would be going fast n whip around corners n if they were there they better move or jump cus stopping was not an option.

It can be annoying in crowds or stores but make your presence known. If they are aware of you they will be more careful. I have had run in n close calls but I find tgem more comical than anything but I view falling the same way..but I am not normal that WAy...I try to find the hunor or positive in just about everything.

On the subject of having a family.. its hard but its worth it if you are commited and ready for the challenge. PM me anytime or ask me here. Btw I am a woman..its a bit different for men...but doable if you have a willing n able partner.

@PeppermintSnowflake

I really like that people on wheelchairs are community ambulant and i like to see them being in the community although i'm not a wheelchair user! I hope the world can be made a really inclusive place for everyone on wheelchair! :)

Anyone here,im paralyzed from motorcycle accident

Hi, i joined recently. I'm a C6 complete quadriplegic. Would love to see more action on this community regarding issues related to spinal cord injury.

@Skywheeler

Welcome on board! Glad you joined!

Is your need about having discussions about spinal cord injury ? You meant that?

Take care!

@PeppermintSnowflake

Hi, I am an electric wheelchair user. I use electric wheelchair inside and outside the flat. I also have a caregiver who helps me with transferring from bed to wheelchair, dressing, personal hygiene, cooking, cleaning. I wish to connect with you.