tag:blogger.com,1999:blog-6181780691238814823.post6686175957459769410..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): Wheelchairs, Walking sticks, and Wall-walking.Michelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-6181780691238814823.post-88421097126775704862016-11-24T09:49:00.656+11:002016-11-24T09:49:00.656+11:00It is also worth saying for many people mobility a...It is also worth saying for many people mobility aids are about financial class... where I am from there are no ways to get financial help if you are able to move about your house without absolutely needing a wheelchair. Many people go for a long time with canes or walkers because they are cheaper. Wheelchairs are horrible expensive given the need for them, many people who do need them (part time, and in some places even full time) cannot get them. <br /><br />I remember reading a story about someone who was dumped out of their chair by a stranger because someone took it upon themselves to be "disabled police." While I really hope that is not the normal, it is terrible frustrating that people feel they have a right to interfere in your business and comment on your life. Many people who need wheelchairs do not have entirely accessible homes and must use other devices to get around their homes. Many buildings and cities are not accessible, and even ones that are - often lie. I have found they are not nearly accessible. Even doctors offices are not. It is beyond frustrating. <br /><br />For the ignorant: If you don't like that someone needs devices, do everyone a favor and leave them alone. You aren't helping anyone insulting, demeaning, projecting, and stereotyping them. Assume good faith, when it will not hurt you to do so.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-66569712946785443332016-11-24T09:43:43.866+11:002016-11-24T09:43:43.866+11:00I recently went from being functionally ill and di...I recently went from being functionally ill and disabled to severely ill and disabled. I could walk before, and I resisted until I realized for many of us with disabilities... the chair, the walker, the service dog, the cane... they are just tools to enable us to be able to do things we otherwise could not. The energy and effort wasted pushing ourselves through pain, exhaustion, etc. could be spared if we utilized tools when we need them.<br /><br />I had to convince those around me about the chair because they were afraid they would be accused of "enabling a fat person to be unhealthy or lazy." <br /><br />In my case... A chair is not convenient (mine is a standard, nonprescription manual light weight, which means it's about 40 pounds). My caretaker is my mom and she is also disabled. But so long as we can use it and if we can get help we will. It will also be the last thing I let anyone take away from me as long as I am this ill (or, worse if it ever happens, I sincerely hope not). <br /><br />I go out without the chair sometimes, and I pay for it. I am slow, I need long breaks of sitting if I must walk. I pay for it for days, weeks, and sometimes months later. If people have no where for me to sit: I will lay on the floor no matter how dirty or disgusting because the option of falling is not a good one. <br /><br />Even accessible buildings are hardly so. I almost fell out of my chair or got hit by a car using it on sidewalks. People would talk and not move to get out of my way. Some people were also very kind: when a station listed as accessible and turned out not to be, a stranger helped my mom carry the chair up the stairs while I slowly walked up with the rail. Another stranger told us what station was accessible. Some strangers helped my mom carry the chair onto and off the train. Another held a door for me and another stopped the elevator from closing on me. But if I could I would go without the chair, I just can't at this point.<br /><br />The difference in my life is that if I did not use my wheelchair and have someone push me... instead of getting medical care I need, I would simply not be able to go. For the first time in at least half a year I am going to do something fun outside of my house and I need a wheelchair to do it. So like many disabled people: I am not paralyzed, but I do need the chair for my health. The intent of something health related doesn't matter with tools so long as they are helpful.<br /><br />If I had gotten the chair earlier, in my case, I may not need it as much. I might not be this ill. I am a part time wheelchair user.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-86371382484814443392016-08-11T03:29:37.975+10:002016-08-11T03:29:37.975+10:00It be becomes a matter of energy Consumption. In m...It be becomes a matter of energy Consumption. In my previous dysautonomia days. I worked as an occupational therapist who watched my dad deal with multiple sclerosis and then a few years ago my mom had a stroke which left her dealing with right sided paralysis. Long story short both of them used electric mobility devices that I pushed for much to the dismay of some. Quality of life. How much energy do you want to spend propelling a wheelchair when you are already balance and strength Compromised. Nobody wants to give up on mobility, but certain days call for different weapons to soldier on. Cane walker wheelchair electric wheelchair. Keep as strong as you can and if you want to zip around judgmental walking people leave them in the dust. <br /><br />Can't control the universe but I can control the ride. And sometimes it is just good to zip on and let me decided. <br /><br />Yahoo for big dogs that help. My labradoodle used to be my eyes when my vision became overwhelmed by low blood pressure. Use what you got.<br /><br />My autonomic specialist said that crashed happen when the autonomic system becomes saturated from being overtaxed. I always blamed something I did or didn't do. Now I know that crashes just reset back in time. What I have of my autonomic nervous system is doing its best. And sometimes walking around is just too much. Good news to my former overachieving self. The rests are as important as the functioname days. Now I am learning to be at peace during the crashes. Laying is active rehabilitation for me to move on to feeling better and not a time to panic and go to a dark place of what if. What if dark turmoil land is not a good place for an adrenalin compromised girl who just want to enjoy the gratiful moments life has.<br /><br />Have a happy day.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-4361193697036666222016-08-10T13:34:05.533+10:002016-08-10T13:34:05.533+10:00Well said Joseph! Confined to a wheelchair, wheelc...Well said Joseph! Confined to a wheelchair, wheelchair BOUND....it makes me cringe. I have daughters in wheelchairs and they bring FREEDOM! One of them can walk but arthritis and spinal scoliosis means that she picks and chooses when she wishes to expend her energy out of the chair, deciding how much pain she can put up with later in the day. I know she faces judgement and criticism for that but hey, it's her body and only she knows what really happens with it. I've had people with increasing stenosis and accompanying paralysis say in front of me and my daughters, "I REFUSE to end up in a wheelchair!" not realising how hurtful that is but also how much they have to GAIN from having one. Leisahttps://www.blogger.com/profile/14939172770101669296noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-51329744722562368862016-08-09T18:17:24.398+10:002016-08-09T18:17:24.398+10:00I don't know if it's luck, but I rarely ge...I don't know if it's luck, but I rarely get any comments about the fact that I switch from wheelchair to walking stick, or even no mobility aids. Even after an integrated dance performance, where I stood up from my wheelchair, I got really nice compliments afterwards from the audience. They do ask why I need the wheelchair, but it's only out of interest. <br />I wish all of you had more experiences like that. ❤ People shouldn't judge when they don't know you.Jacquelinehttp://www.salamistinkt.nlnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-6664063666961223922016-08-09T09:48:13.186+10:002016-08-09T09:48:13.186+10:00Agreed! I bought a motorised chair on eBay. It is ...Agreed! I bought a motorised chair on eBay. It is wonderful!Josephnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-20098858732112743992016-08-09T09:30:51.278+10:002016-08-09T09:30:51.278+10:00Well said, Michelle, and Barbara! It's also ab...Well said, Michelle, and Barbara! It's also about time that people stopped seeing wheelchairs as a symbol of tragedy. Why try to stay out of one like its some sort of dirty need I should be guilty for? I am not "confined" to a wheelchair" I am mobilised by it! I can get out of the house! I have energy to move around the place where I want to be rather than use it up on the journey. People with energy issues look different to the classic model of permanent, unchanging disability. We can sometimes get up and move around. It's all about conserving energy for appropriate times. Don't pick on us for being careful with our precious resources. We know what we're doing and good on anyone who gets that fundamental principle of seeing something unusual and granting benefit of the doubt and learning from it.Josephnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-70379582143566142942016-08-09T02:25:20.252+10:002016-08-09T02:25:20.252+10:00I aspire to have an electric wheelchair someday so...I aspire to have an electric wheelchair someday so I can go out more often and not worry about accidentally walking too far from my car and getting stranded. It is so expensive to get the kind I need.<br /><br />You'd think that people earn some kind of bounty for "busting" a person who uses a wheelchair when not paralyzed. I don't get it. Thanks for continuing to spread the word that there are many reasons a wheelchair us a useful part of our plan for increased mobility. labyrishttps://www.blogger.com/profile/13843426891451691056noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-55457006751405058462016-08-08T20:37:20.855+10:002016-08-08T20:37:20.855+10:00It's about time people realised that when peop...It's about time people realised that when people (usually reluctantly) submit to using a wheelchair, it doesn't mean that they have to sign up to using it full time. Like you, my son has different challenges on different days - but often a good day where he does alot because he feels better than usual is followed by a rubbish one where he has paid the price for doing too much. People should realise that trying to walk and not use a wheelchair is to be applauded, or at the very least, not to be questioned by strangers.My son has even been told that he cannot use a store wheelchair because he was "just playing about with it" because he could walk into and out of the store. Anyway - rant over - I am so glad that you have written and shared this - to me it's just common sense that you use something when you need it and not when you don't, without having to worry about justifying yourself.Anonymoushttps://www.blogger.com/profile/04113759256724654037noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-13369582310522240512016-08-08T19:21:33.580+10:002016-08-08T19:21:33.580+10:00❤❤Anonymoushttps://www.blogger.com/profile/14339124393279630095noreply@blogger.com