All about My New Custom Wheelchair
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- Опубліковано 18 тра 2021
- Hi, my name is Olivia!
I was born with a rare genetic condition known as Ehlers Danlos Syndrome (EDS for short). Living a normal life with this condition while receiving proper treatment and support is just about as rare as the condition. EDS causes a multitude of secondary conditions and with each secondary condition comes complications. In return this causes many medical professionals to reject patients that live with EDS out of fear from the unknown. This causes strain on ones mental health.
My goal in life is to help those that struggle with mental health by becoming a motivational speaker as well as raise awareness for EDS. I came to know of my life purpose through a miraculous experience that brought me faith. The struggles of this world are big and try to tear me down but my God is much greater and beyond the dirt of any planet.
What is EDS?- www.ehlers-danlos.com/what-is...
My experience with EDS- • My Rare 🧬Genetic Condi...
My secondary conditions- • P.O.T.S ❤️| THE TRIFEC... , • My Progressive Disease...
Link to Purchase: www.bonfire.com/oli-keeping-t...
Just want to donate? Click on this link-
www.gofundme.com/f/21bw1arho0...
![How I Get Around w/ Ehlers-Danlos Syndrome #ThisIsMyEDS [CC]](http://i.ytimg.com/vi/qxGQ9UMHKBk/mqdefault.jpg)
![How I Get Around w/ Ehlers-Danlos Syndrome #ThisIsMyEDS [CC]](/img/tr.png)
There are many reasons people use wheelchairs. Just because I have the ability to walk does not mean I don't need my wheelchair for safety and freedom.
Are you a wheelchair user? Share why you use a wheelchair and show just how diverse the wheelchair community is.
P.S.- Sorry about the auto focus. I didn't realize there's a giant smudge on my lens🤦♀️
I have a Quickie QRi Ridge lightweight wheelchair
Mines is my favorite color Candy Apple Green
I was looking at those frames before picking mine out. Those come in very cool colors! ☺️
@@OliKeepingTheFaith what type is it?
It’s a Ti Lite ☺️
Shame can’t get a custom wheelchair approved where I am but I’m glad u finally got yours
Aww I’m sorry to hear that. Thank you, I hope you are doing well!
@@OliKeepingTheFaith I’m managing the best I can hope u r doing well too
I just wanted to say that you are very well spoken!
Thank you!
I’m going into my first portion of my process tomorrow! So nervous that the doctors won’t think I need it. So fingers crossed things work out. I know it’s a long process, but your videos are really helpful
Awww! I hope the entire process is smooth. If you ever feel like you’re not being heard then look into a patient advocate. The right doctor will at least listen to their patient and run tests if not already done. I hope all goes well! 🙏🏼💙
Fantastic that you have your new chair, enjoy your renewed independence and confidence in your activities!
Thank you! ☺️
i really recommend looking into the alber motorized wheels! Im getting the M25 but the twion wheels are a lot lighter
Ok, thanks!
@@OliKeepingTheFaith Twions are still really heavy. Chronically Jaquie did a video and explained how the Twions turned her normally 20lb (w/regular manual TiShadow wheels) ZRA into 50lbs, and that was one of the reasons she switched to a different kind of power assist.
A seating clinic can cut off and cap where the push canes are also the brake issue can be fixed by just getting them adjusted forward to loosen them up
Awesome! Thanks so much! I have adjusted the axle on my own and it’s nice for saving my energy but I can’t put anything heavy on the back. I fixed one of the breaks but still have to fix the other. My biggest problem is my caster wheels getting stuck from hair that I’ve shed & wrapping around them with use in my home. My dad suggested getting a very thin box cutter to slide in there and cut the hair out of the wheel. Haven’t tried it yet though. Any suggestions?
@@OliKeepingTheFaith seam ripper! You can get them in the sewing area of most stores works like a charm and if you have a backpack set the axle a bit farther back to compensate so it add a good balence to still do pop ups
Great, I already have one at home. Thanks!!
@@OliKeepingTheFaith Yes, definitely a seam ripper. When I first got my chair, I used a tiny allen wrench, but then I discovered that a seam ripper works far better. Best thing I've ever tried for getting the hair out w/o having to take the caster off.
Love it i become a New one too but have to weit for it 3 Months from now.
Thank you! I’m definitely going with something else for my next one though. A few people have pointed out that my wheelchair is certainly not the most lightweight option available. I hope you enjoy your new wheelchair!! 💙
@@OliKeepingTheFaith thank you have it yesterday today my First drive with it have the duodrive from alber
I have MS and i use a wheelchair
do you have a link for where you got your wheel chair i absolutely love it
Aww thank you so much! Unfortunately; I do not have a link for where I got it because I did not order myself. It was put through my doctor and insurance. My doctor just went through the company that my insurance was likely to cover (Numotion). My wheelchair was fully covered by insurance but my power assist was not. I would definitely talk to your doctor about it. They might know who your insurance covers. Good luck! 💙
Your push handels or not fine, I had a chair to juice and slapt behind, my shoulders weren’t oké and had weeks can’t rol my self.. please watch out, but for the rest very lovely chair 😉🌹
Hello, from Melbourne Florida, I enjoyed listening to your video. I’m a retired, looking for an ultralight wheelchair. Could you send me the brand of your wheelchair & any information about it? Who are you purchased it from and when? How many pounds. Are you going to use a Smart Drive power assist unit on it?
Hello, welcome! I was just in Melbourne, Florida. I have the Tilite Aero Z with a titanium footrest. It was measured, made and delivered by Numotion. My insurance purchased it. I think the total weight is 18lbs but would probably be significantly less with different castor wheels. I have the smoov power assist but rarely ever use it but when it’s needed, I do enjoy it. I love my wheelchair but there are several things I would have changed about it, knowing what I do now.
Hey, great Video👍 you're Chair is Awesome, can so stell mir the Name of the Seat Cushion?
Thank you, have a Great day! Greetings Tom
Hi Tom, welcome!
Thank you. The name of the cushion is called comfort curve. It’s super comfy!
What size backing did you go with? and what name brand? Would you recommend it or not if no why? Currently looking to purchase this
wheelchair and trying to find out which seat and backing works best
Sorry it’s been taking me so long to get back with you. I don’t know the height of the seat back. The width is 16.5in or 17in and it’s a TiLite.
I really love my wheelchair but I hear there’s lighter ones out there and I believe it. So, perhaps not, if you’re looking for the lightest option available. It really depends on your needs and desires.
Purple wheel chair
What is your wheelchair? I would love to get me one. It is beautiful. I am wanting one in red and tourquiose.
Thank you! It is a Ti Lite. I’m not sure what the full name is but it’s the most light weight from Ti Lite. If you get this kind you’ll love it! It’s super light and simple.
@@OliKeepingTheFaith How did you get your insurance to pay for it?
@@lynnham6896 My doctor just ordered it and I had to get evaluated by physical therapy and occupational therapy. The wheelchair got approved immediately after the smart drive was removed but my insurance doesn't pay for power assist. I made this video: ua-cam.com/video/VwjUQkQ_Jv8/v-deo.html to explain the process. It took much longer than what they explained to me but it was totally worth the wait. I will explain more about the power assist process in my next video.
@@OliKeepingTheFaith Looks like the caster arm says "AERO Z", in which case it would be aluminum and the heaviest of the Z series, which also makes it the heaviest adult size rigid chair TiLite makes. I've got one, too, and my next one is definitely going to be a ZRA because of the titanium vs. aluminum weight difference (titanium being a fair bit lighter than aluminum), since even with the wheels off, I can still sometimes barely lift my frame into the car. I believe the TR (the lightest of the T series, which are, apparently, lighter than the Z series, even though they're dual-tube not mono-tube) is technically the lightest of their adult size chairs.
What tilite model did you go with?
I cannot remember the exact model. I’ll have to find the insurance paperwork. It’s like trying to find a needle in a haystack but I’ll see if I can find it for you today ☺️
Why don't they just put pedals on wheelchairs so when your arms get tired you can use your legs to keep going
😅 that would be awesome!! But at that point it may as well be a well balanced trike 🤷🏻♀️
Because some people can’t move their legs
This is true. However, if it was just another way to personalize your wheelchair without adding any bulk or weight then I would’ve chosen that option. The main nerve (branchial plexus) in my right arm has been slowly dying in my right arm since I was a child. It’s starting in my left and my arteries are majorly compromised. In short- I have partial progressive paralysis AKA very severe Thoracic Outlet Syndrome. Pedals would be very nice for me and others who might benefit ☺️ and those who wouldn’t or couldn’t benefit could skip that option