What is the biggest unmet need you feel those living with RA deal with?
Unmet needs: something that still needs improvement, changes that have to be made, or anything that society has sort of turned a blind eye too. There really is no wrong answer here. Please share your thoughts, as this also helps us community health leaders... try to assist all of you better in any way we can!
I think housing that is compatible to disabled people. RA included. Like, no stairs, bath saftey rails. There are probably others butbit is my dinner time, sorry.
Blessings and Prayers
Casmere
Hi
. I think you know that, given her wheelchair, accessibility in all aspects of life is a major issue for my wife, Kelly Mack. She wrote this article on what would inclusion look like: https://rheumatoidarthritis.net/living/physical-disability-inclusion. She is a big fan of universal design for housing. Here is a very good site on the topic: https://universaldesign.ie/about-universal-design. Kat wrote here about her efforts to build an RA friendly house: https://rheumatoidarthritis.net/living/build-arthritis-friendly-house. There is so much to be done in this area. Have you ever watched HGTV? How often are the focusing on accessibility? How often are people with clear mobility issues guided towards places with lots of steps, difficult entries, etc... (Kelly and I are big HGTV fans, but this drives her nuts). Have you been able to add accessibility to your home? Thanks for bringing up this topic. Best, Richard (Team Member) Thank you for your thoughts. A lot of housing can use improvements, as well as, public places and establishments. Each state various and as do countries. Some places are harder to dive into these changes it seems due to the landscape and cost. But things still need improvement for sure. The article my team member provided is a great resource. Hope you had a lovely dinner! -Effie, team member
thank you for your reply. Yes my daughters house has adapted for my disabilities. As there are 14 steps, curved staircase to the upper bedroom level, we, I was the one to apply to March of dines for a chair lift. I got it approved the only thing is if I want a warranty it cost me lots. The first year there was lots of issues inder warranty. They ended up replacing the mother 3 times i think then replace the whole chassis, not the chair above. So because of this I had another years warrantly added on. After the warranty was up I required service again so had to purchase a 1 year plan for $450.00. This year I had an issue the unit had no power even though the power supply was still on, so when called the Order service man said was the units own batteries, and as you have no warranty the batteries each cost 7.50 plus the setvice call. I ended up having to purchase a warranty plan fit $1450.00 for 1 year. They came, replaced the batteries, but had to call for issues every 2 weeks. After a number of calls I was passed tge the manager/owner I believe told himbthe problem. He said a service man will call to let you know whenbtgey would be herr. When he came, he replaced the whole chair unit completely. My warranty started May 1st and have had no issyes since the unit was replaced. I don't have that kind of money so had to use my linr of credit. Sorry got focused on chair lift issues. It has been 7 years September 2018 since I have had it.
Now, also have bath rails, covered, bath chair, and a bath bench I purchased when I had my hip replacement. I also have sock aid, reacher and 2 canes, plus my first rollator/walker from August 2017 covered except a small amout. Since 2017 I was able to qualify for a new rollator/walker which I got in 2023.I purchased other items myself like a suction toiletries holder, I have also purchased tensor open finger gloves 2 pair, wrist supports, knee support. There are probably a couple more items but can't remember right now.
Now, when I finally find, or housing comes through, I have to look at the issue of stairs, to be able to fit a bath chair in the shower/tub, and have car parking, plus within my budget.Not easy at all in this economy. My best bet is Ontario Housing. They have are accessible units and either ground floor or an elevator.
Sorry this is so long, abd will look at the item you attacged.
Blessings to both you and Kelly
CasmereHi
. Sounds like the original chair unit on the lift was faulty. Sometimes replacing a whole unit can be more effective that piece-meal trying to fix it (the problem is it is so difficult to know when that is the case). Kelly's parents had one installed years ago for her and, luckily, have had success with it. The cost of the warranties you mentioned is close to being prohibitive on its own. Kelly has most of the accessibility items/tools you mentioned. Also, we got a first floor condo when we moved seven years ago. Wishing you continued success in achieving accessibility. Best, Richard (Team Member)
thank you Richard, si it runs het, the only thing is the crazy loud, shrill beep that happens when you stop on a wrong spot and as there is a lift at the bottom, as the lift goes up or down. It is very annoying. The f one I had before I was able to get them to turn the beep down quite abit. I did ask the installer to please turn it down, his reply "we are not aloud to do that anymore." I am thinking ishould call them and ask about having the beep turned down. I am aware it is a saftey feature.
Blessings, CasmereHi
. Certainly understandable that you would want to be able to control/lower the volume. I know that how to lower it can depend on the model. One workaround I've seen, until you can get help or proper instructions, is to put tape over the buzzer/speaker. In some cases this can require taking the cover off to access it. Hope this might help. Best, Richard (Team Member)
More flexibility and willingness to engage in dialogues with employees (like many of us) living and suffering with disabilities. I’m a journalist and I love love LOVE what I do but this is my 2nd leave of absence and it’s just getting really hard to “do the job like everyone else.” I constantly feel like I’m left to choose between my career (which I’ve battled and studied and worked hard to keep) and my health (which matters most) … it feels like and either or conversation in the work force rather and an open dialogue. It’s really frustrating. Especially since RA in many cases shows up as an invisible battle to the eye…
Can anyone else relate?!Hi
. It is great to hear that your employers have been supportive. I didn't realize you were part of the on-air crew. This does open up some avenues for connection that your employers may find advantageous (although I don't mean to make it seem like they would only be interested in ways they could benefit). I'm glad that you have found this connection with viewers helpful and clearly you have touched some of them. The grieving process is a real thing and ... what's that saying ... "a burden shared is a burden halved." Best, Richard (Team Member) Hi Lizabella, thank you for taking the time to share your thoughts and experiences under my thread. Really appreciate it. The invisible illness aspect can be very hard to explain to people in our lives, let alone co workers, who may only be used to seeing us on the job and performing at a pace that sometimes RA and our bodies do not like. I studied journalism too, and currently doing more freelance work from home type of gigs. I give big props to you though for sticking with this all while managing your RA. There are a lot of things suggested by other moderators and community members here that you can consider. Does your work offer any sort of other accommodations in addition being able to take leave of absence? -Effie, team member
