Getting the Chair

What is it about using a wheelchair that makes me feel self-conscious and vulnerable? A chair is the smartest way to get from Point A. to Point B. when the distance is just too great to walk.   Or I should say, hobble, bent over my cane and looking as if I am about to collapse. Often, that is the case.

Is self-esteem such a fragile commodity that it caves in to stereotypes?   Recently we were in a corridor outside our room in a Boston hotel. When we heard an entourage coming up behind us, we stepped to the side. Stephen Hawking and his handlers seemed to streak by. Hawking was in his motorized chair, looking like the King of Prussia, alert and semi-smiling, I thought. No self-esteem deficit there, I thought.

I am not sure I could pass seventh grade algebra, but I think enough of myself that I should not feel like a loser on wheels. But I shrink into the chair until I am smaller than life and cannot wait to get to the gate at the airport.   I have yet to run into anybody I know on one of these excursions, but I know it will be humiliating. How crazy is that?

Please do not advise me to seek professional help. There are many better reasons for me to do that. I used a chair at Penn Station not long ago. The redcap took me down an elevator and toward the front of the train. I fetched a coffee and newspaper on the way. By the time the hordes of business travelers boarded, I was sitting quite comfortably reading.

What is wrong with me?

49 Responses to Getting the Chair

  1. Jack May 14, 2017 at 1:07 pm #

    If the way you react to being in a chair means that there is something wrong with you, then I have the same problem.

    I have reached the point that a cane does not provide me with enough stability for safe walking. After several falls — a few that required calls to the police for help getting me off the ground, and one that earned a visit to the hospital and a few stitches — I gave in. A few weeks ago I went to a rehab center for a wheelchair assessment and recommendation.

    I thought they would help me order a manual chair for use when I am feeling especially weak. Instead, the PTs who conducted the assessment were unanimous in their opinion that I really need a power chair. After all, my right arm and leg are essentially useless, so the best I could do in a manual chair is to go in circles. While the PTs took the measurements of my legs, hips and shoulders needed to order the proper size chair, my wife asked if I wanted a tissue. I asked, “For what?” She pointed to her eyes. Until then, I hadn’t realized that I my eyes had welled up with tears.

    Denial of my disability had always been my best strategy. When I am in a wheelchair, there will be no more denial. I feel defeated. I know that it doesn’t make sense, but I am embarrassed that I have given in. I can relate to those athletes who, after an outstanding season in which they have won a division title, sit slumped on the bench crying after a tough loss in the national championship game.

    I’ve had a good season; just not good enough.

    • Richard Cohen May 14, 2017 at 1:24 pm #

      Well said. To quote an ex-Pres., I share your pain. You will get there. So will I. Losing independence is awful. But we do what we must.

      Best,
      R.

    • Jan May 22, 2017 at 6:42 am #

      Jack, I relate to much of what you said, however I am a former athlete, and how we view ourselves matters greatly.

      Yesterday, I picked my husband up at the airport but just prior, twice, including once in the garage, my legs were so weak I kind of melted/crashed if you will onto the floor and could hardly get up and into the car after making dinner early and having been physically busy all day–I could thankfully drive fine.

      I know firsthand what it is like to work hard in a sport and to be successful and not successful, and I assure you that dealing with MS is far harder, both physically and mentally. Any athlete who says otherwise has not been through what we all have been through. Yes, many work very hard and daily to reach the top of their games and only become known if reaching the top of the funnel–but this is far different.

      Your first line really says it all. I myself go in and out of acceptance, denial, anger, disbelief, etc, but in the end I know that I am who I am regardless of the physicality. It doesn’t always feel that way, which is part of the angst I often work to overcome.

      Read below comments from Vikki and Jane. While not always easy, how we choose to respond in life matters.

      • Jan May 22, 2017 at 7:01 am #

        I should also likely mention that I think most know that we are all very similar but different, too.

        I tend to still push myself rather hard, probably more than I should–regarding driving, I know someone else with MS who is like me in that walking can be extremely difficult, but driving is fine. I would not compromise or risk my safety or others’.

        About other people who text and drive, that is an entirely different discussion!!

  2. JoanZ May 14, 2017 at 2:08 pm #

    You make perfect sense to me Richard. There isn’t a moment in the chair that I don’t feel embarrassed. Which really doesn’t make sense. But that’s what I’ve got. I did finally learn to not say it out loud. Also learned to smile and say “thank you” for any fringe benefits that come along with it. Why not?

  3. Kat May 14, 2017 at 2:50 pm #

    I started using a wheelchair at 33. I am now 47. Physically it has given me a better quality of life. Emotionally it can be difficult at times. Everyone will end up in a wheelchair at some point if they live to a certain age. Unfortunately some of us make it there a lot sooner than others. My family knows when snapping photos, I prefer to be shot from the chest up. I also like to wear heels sometimes in my chair. Hey, whatever makes you feel good about yourself. Dry martinis help too.

    • Yvonne May 15, 2017 at 9:34 am #

      I reworked an American Express line for perks: “handicap has it’s privileges ” 🙂

  4. Amy Hunt May 15, 2017 at 7:52 am #

    I do understand. I was a commanding 5’8″, now I am 4’2″ and eye-level with everyone’s arses.

    That said, I decided voluntarily to get a wheelchair. I thought it more dignified than I walker (I was 49 at the time), I could be like Lieutenant Dan, tough guy. I got red spoked wheels so the chair didn’t exclusively communicate tragedy. I was safer, less likely to end up in the hospital with broken bones, using a bedpan. So many rational arguments. But it was still very hard on my ego. It felt like I was giving up.

    Here’s my upside: I am out in the world more now, with more confidence. I say “yes” more. Got wheelchair seating tix to “Hamilton.” Everyone else is waiting until 2019, I waited 2 months. If you pay attention to exactly what you get and how you bling it out, kids think it’s cool and it helps you lighten their parents up.

    If you haven’t seen it, go to YouTube and watch John Hockenberry’s TED talk. It helped me.

    Good luck. We will stand and walk confidently again. ReWalk and Harvard Wyss are working on a soft exosuit for stroke, MS, elderly, and DARPA. Technology will get us walking before medicine. Check that out too. Target availability is two years. My goal: be safe and strong enough to get one. My wheelchair is part of that. Booyah.

  5. Jane May 15, 2017 at 10:02 am #

    I feel the same, and I benefited from reading everyone’s comments. We are all such fragile beings when it comes to things such as this. Thank you, Richard, for expressing what we all feel.

  6. Yvonne May 15, 2017 at 10:11 am #

    As my disease progresses over the years I have this conversation with people around me, the inevitable question: why don’t you just get a…. (fill in the blank, cane, walker, wheelchair, scooter). They don’t understand the mental adjustment we have to make and most pf us aren’t prepared because of our OWN stereotypes of what handicapped means. I hated going to a cane. What will people think when they see me? Will they pity me because they remember how I use to get around. I made good sport of it and moved on. A few years later and several falls because of unstable gait I had to decide on moving on to a walker. Anxiety, slight depression and isolation as I hated trying to keep up with my friends and family while they walked at a “normal” pace and I maneuvered through crowds with a walker. “I’m too young for this” my inner self was screaming so I bought a $600 Strollater convinced it didn’t look as bad and here in the US it’s like a Ferrari when people see it. My vision of myself was 100x worse than anyone around me as I walked down the street. I began to tell people it was like a disability Ferrari. Just as I’m adjusting to that stage of mobility after a few years MS strikes again and I’m dragging my body rather than strolling with the strollater. Oh no, now I have to wrap my head around a motorised mobility aid in the near future 🙁 I’m not ready although I did see a Hummer scooter…..sigh. I hate this damn disease because I get on my nerves.

    • Amy Hunt May 15, 2017 at 11:20 am #

      I identify quite a lot with your desire for Ferrari and Hummer. Look at the KD Smartchair. The goofy logo on the silver bars is just a sticker, you can take it off. Looks cool. I get comments. Kids want to drive it at the park. Seat not comfortable, get a cushion.

      I could not abide a scooter that made me look like a Florida senior citizen…

      • Rita May 15, 2017 at 1:58 pm #

        Exactly Amy! Thanks I’ll check that scooter out as soon as I reconcile with the fact that’s where I’m headed!

  7. Jane May 15, 2017 at 12:11 pm #

    I finally started using a cane. Of course it had to be an artsy cane or a pretty one. My grandchildren love my cane. Then I decided I needed a motorized scooter to get into the stadium to watch baseball. I am continually surprised at how many people comment on my Triaxe Sport scooter. Even able-bodied people look at me with a certain envy after they have trudged into the ball park and are exhausted. Having to give in to a cane and a scooter has been difficult, but it has also been character building. Above all, these tools have given me my independence, which I will cling to forever.

    • Rita May 15, 2017 at 2:14 pm #

      Jane you hit the nail on the head! Independence is key so by any means necessary but still with a little panache 🙂 Thanks for the recommendation.

  8. Sandy Stolaronek May 15, 2017 at 3:34 pm #

    If you think it’s weird that you may be self conscious about needing and using a wheelchair, I’ll do you one better…..I could really use a power chair myself, for all of the reasons listed; such as spasticity, wide gait, dizziness and loss of balance. I have been desiring a power chair for several years now, but having to get the equipment on the back of my car is the only thing stopping me… Haha! I guess I feel like having to get my car fitted for a chair to take with me everywhere, would take even more time for me to get somewhere. In one way, it’s a faster way of getting around, once you get the chair off of your car. The problem with this is, you must wait until the chair lowers down off the ramp and then, you must raise the ramp back up to its original position…. and this all takes time. Once you’re done shopping, you have to do it all over again. I suppose I have to look at it as though getting around the stores will be much faster than getting one of the store motorized carts, especially if it’s not charged well enough… been there, done that! I would definitely have to take all of this into account when going out to shop and whatnot and I think it would definitely be worth any time consuming issues that may be involved, in order to have my own chair. As far as getting around the house, it would certainly save me a lot of energy.

  9. Jane May 15, 2017 at 4:09 pm #

    Exactly, Sandy. Save your precious energy for what matters most to you.

  10. Brian L. May 15, 2017 at 4:15 pm #

    Lots of good information here. But Richard, please notice that everyone here that has made the leap (using the term “leap” very loosely) to a chair, seems to acknowledge that the chair was a good move. I made the change about ten years ago. My feelings then sounded a lot like what I’m hearing from all of you now…what is everyone going to think of me in a chair? Will they think less of me? Are they going to be sorry for me? How will I go on? Blah blah blah. But my experience has been, well, a big ol’ non issue. It turns out, nobody really cares. And I don’t mean in a self-absorbed callous way. More like a “wow, even though you’re in a wheelchair, you still seem to be the same person kind of way. So to anyone who is fretting over the public response to your new mode of travel, I would have to say get over yourself. Your true friends are not going to see you differently. If anything, they’re going to have more respect for you for having taken back some of your life since you’re going to be able to go and do more things. And besides, if anyone does think less of you, who cares what they think?

    • Jan May 26, 2017 at 10:12 pm #

      Brian, much-appreciated input!

  11. Jan May 15, 2017 at 5:29 pm #

    Why, you ask?

    For all of the reasons mentioned above, and I’ll add… pride and the experience of knowing differently, and wanting that again.

    I’m actually reading this now faced down trying to rest before making dinner with ankles and nerve damage absolutely killing me after going to an outlet mall with major construction… even the rollater was tough. Oh how very sweet that subsequent mart cart was at the l grocery afterward. And store sackers typically love to ride them back, as it gives them a fun break.

    On Mother’s Day, my husband took me for a walk around our neighborhood, with me sitting in a wheelchair… not our former mode, but it was nice to be out and with him.

    And yes, a good lesson that regardless, we are still who we are and our friends know and respect that. Plus, as one said, about everyone has something…granted, this is really something but still. And the key with this as with many things is how we choose to respond to it.

    I don’t like it either, and I don’t think anyone really does so we do the best we can. I know a few teens who died from either suicide or car crashes so while this is not easy, it also forces me into perspective.

  12. Jan May 15, 2017 at 5:38 pm #

    Oops, wrong Q; just looked again. What’s wrong with you? I can’t say that goals of independence and resiliency are so wrong…

    A lot of this just stinks, so maybe the focus has to be elsewhere and on what we CAN do, not what we can’t… you know the courage to change the things we can and the wisdom to know the difference? I don’t always act so wisely, so taking my own advice would be a good thing.

    A little anecdote from many years ago… I remember someone in high school at some beer garden thing outside in my former town not drinking at all yet being so very comfortable with herself that it made others around her comfortable too… a good message in there that.

  13. Rita May 15, 2017 at 7:16 pm #

    Richard- this is why we appreciate your blog! This was a candid discussion that we probably all needed to have! You topics always challenge us think about our own perspectives as we journey through our disease. We get to see others battle the same fears and insecurities which is strangely reassuring.

  14. Jan May 15, 2017 at 8:13 pm #

    OK as I thought about this a little more, yes Richard, it is you…it’s also me, and others having to deal with this beast.

    I am reminded of seeing Texas Gov. Greg Abbott, long in a wheelchair after a tree fell on him when he was jogging–so it seems to me that he knows differently also. I don’t think differently of him, but I do think differently of me. Hmm.

    I do think more so lately about a friend, two friends actually, who did that MS walk near LA in my honor–one made a poster with a clip from the MS Society that says it takes people with MS five times as long to do simple tasks that most people take for granted. True, and harder and with pain in my case.

    I just do as I’m able and focus out. Life really does go by so quickly. I am happiest when I can make some type of impact. A book, perhaps…

  15. Pat Harper May 16, 2017 at 8:01 am #

    I have a friend whose perfectly healthy wife fell recently after stepping on a tricycle in her home. Didn’t fall far, just to the carpet. Put her hands out behind her to cushion the fall. Broke both wrists. Breaking one would be really annoying, but both? Consider what can’t be done when both hands are out of commission. Yeah, that’s right.
    Now, let’s weigh the annoyance and humiliation factor of feeling somehow diminished by being in a wheelchair vs. the humiliation factor inherent in having both hands out of commission. Do THAT math.
    As with most such analyses, there isn’t a good alternative. It stinks, but it could stinck worse. We all have many more things to focus on than how someone will think about us in a wheelchair. Screw that. The history unfolding around us is, among other things, fascinating, and the Yankees are ultra-interesting again.
    To quote a one-hit-wonder band from 1970, “Ride Captain, ride”. You didn’t “sink to the level of riding in a wheelchair”, you’ve earned the right to ride in a wheelchair.
    To quote a one-hit-wonder band from 1970, “Ride Captain, Ride”.
    https://www.youtube.com/watch?v=qAnGe40-o9Q
    Be well.

  16. Kat May 16, 2017 at 9:51 am #

    I am too disabled to use it, but the Whill wheelchair is amazing. So comfortable and almost sexy! It is also now FDA approved.

    http://whill.us/about-company/

    • Rita May 16, 2017 at 11:27 pm #

      Now that is a hot rod! Weighs quite a bit so transport probably needs a sturdy lift. I’m with Sandy on the load-unload time. Hopefully I can find an easy load that doesn’t require a chair lift apparatus…when it’s time to go that route :-))

      • Kat May 24, 2017 at 5:27 pm #

        Rita, when the rep. brought the Whill to my house, he used a portable ramp to drive the scooter out of the back of his car and down the ramp to the ground. So it wouldn’t necessarily need a lift.

  17. Jan May 16, 2017 at 5:04 pm #

    Talk about the word, “crazy”–I really wish I could just scream because of the humid air, ankle and head pain, no good solutions, and weakness everywhere and wanting my body back!!!

  18. Jan May 16, 2017 at 5:26 pm #

    What’s wrong with you, volume 2: simply the desire for a normal status quo, perhaps.

  19. Dale May 17, 2017 at 1:36 am #

    Once I finally sucked it up and parked my insecurities I slapped a MUSH sticker on the side of my chair and grew to love getting the absolutely BEST seats at the hockey rinks of my kids colleges. Movie theaters have great spots for wheelchairs and most ballparks too. Going through customs at the airport usually gets special treatment and cut throughs of lines with a security agent.

  20. Christopher May 17, 2017 at 7:20 am #

    “All living souls welcome whatever they are ready to cope with; all else they ignore, or pronounce to be monstrous and wrong, or deny to be possible.”

    – George Santayana

    Loss is hard, and we all have different ways of interpreting it and reckoning with it. But the loss that comes with disability is especially hard because it blows away chunks of how we see ourselves–where do you go when reality beats up your own reality. Those people who: died in a plane crash, fell into a coma for years, lost both legs in an accident, got disfigured in a fire, talk unintelligibly after a massive stroke, or even developed MS aren’t me… they’re someone else. But then I did develop MS, and that fourth wall tumbled with reality seeping in. Some time passes and I learn to cope with it because I walk badly but I can still walk, and I’ll probably never get as bad as…. But then there’s another slip and reality gets a better foothold. And then another, and another, etc. Then that “statistic on a government chart” looms large, and there’s nowhere to hide or denial to be comfortably cloaked in. It’s very disturbing and fear is not without foundation, not least of which is fairly common bigotry and contempt. Beyond that people just treat us differently now, and not a welcome kind of different. For me I don’t want that kind of attention. The chair will definitely help but I hate being noticed. I want to melt into the background, not feel like I’m rumbling through town in a neon Sherman tank. My carefully curated picture of myself has been sprayed with offensive graffiti, and it doesn’t matter that it’s true.

  21. Amy Hunt May 17, 2017 at 8:54 am #

    Yesterday I was at an event at my 5-year-old’s school. Her classmates were fascinated by my wheelchair, treated me like Mick Jagger. (It is, of course, kinda cool.)

    The teachers and I made it clear that the children could ask any questions. What are those buttons for? How fast do you go? Why can’t you walk? Can I have a ride? My little one announced that she wanted to try to answer all questions first, she knows stuff!

    Time with the simple, happy eyes of children is good. And that’s what I have to add to my wheelchair commentary above for today.

  22. Jan May 17, 2017 at 8:05 pm #

    Out of the mouths of babes.

    Perspective.

  23. Dale May 18, 2017 at 12:29 am #

    Wow what a happy uplifting tale. I love the innocence of children.

  24. Amy Hunt May 18, 2017 at 7:54 am #

    You got that right, Jan and Dale. Left to my own thoughts I am a woman who was 5’8″ and is now 4’2″, eye-level with everyone’s arses. But to them, I’m Caroline’s very interesting mom who gives fun rides. I would do well to spend more time thinking like that.

  25. Jan May 19, 2017 at 9:47 am #

    Amy, I am the same height and when I am in the store scooter, I see things that others don’t.

    After 12 years, the whole thing is still rather unbelievable at many times but then again as I said earlier, many go through a variety of things and people who are my friends speak with me as a human, not somebody with some disease, although they try to be kind about it and understand the limitations in a caring way.

    I really think that for everyone, for myself anyway, the emotional part of all of this is far harder than the physical–and even that would be very difficult for many. So yes, the type of self-talk is very important.

  26. Jane May 19, 2017 at 1:53 pm #

    Amen, Jan, Amen.

  27. Vikki May 19, 2017 at 3:42 pm #

    I very much appreciate all of your thoughtful and honest responses. I myself have started to think about purchasing a scooter of some sort. This is still only a conversation in my own mind, because I am frankly terrified of what my emotional reaction will be. I’ve had MS going on 25 years and many people say they cannot tell I have anything wrong. But after the past two rounds of Lemtrada I’ve completed, I feel like I will be letting so many people, including most of all myself, down. But more frequently I do find myself isolating from social occasions because I feel so unsteady on my feet. I start physical therapy on Tuesday, so I think I will start my conversation here. It feels like giving up and giving in.

  28. Christopher May 19, 2017 at 6:09 pm #

    Vikki,

    I completely understand what you’re going through. But I reached the same pooint only after a year or so after being diagnosed (Dx in 2002). I started with being unsteady–people at work thought I was coming to work drunk. The chair is only there to help you reserve energy, and to help keep you from injury. Go to the physical therapy as much as possible consistently. The PT will keep your arms and legs limber and working for a lot longer than without (always remember the ‘use it or lose it’ axiom). You also may be surprised to find you’re emotionally a lot stronger than you think. Right now is the “psych out” phase… like how an injection needle looks ten times as big before the injection, but after the scary moment it isn’t as bad as the mind created beforehand. Think of it this way: your river boat capsized and you made it to this crappy little nothing raft that you’re clutching for dear life, and now you’re headed toward a huge waterfall but can’t get away because the current is too strong. It’s scary as hell, but you keep telling yourself you’re going to do everything you can to survive this and you’re going to make it. It’s out of your hands and nothing you can do now but fight like hell. And just like most things in life, you willmake it…

    but only to be rescued by dozens of rescuer workers and news cameras as you notice that you put your underwear on over your clothes as you were in a hurry to get off a sinking ship.

  29. Vikki May 19, 2017 at 7:10 pm #

    Thank you so much your kind words Christopher, truly. I’ve had MS since I was 23 years old in 1993, so I really feel like I’ve been through the worst of it. I’ve been through years of relapses, every medication out there I could try I did asap. I am so very blessed to have supportive family and friends. I have used the same physical therapist for over fifteen years and I truly credit him with the fact I am still walking. I have done well on Lemtrada thus far, the only approved drug with a shot of not just slowing down progression but stopping it. This MS is a tough road, so many constantly changing symptoms. I guess we are all allowed a bad day here and there, as long as we don’t stay inside our own head for too long. Tommorrow will be better. I have my team to lead at the MS Walk. Thank you for the post, as always you are truly an eloquent writer!

  30. Jan May 20, 2017 at 1:04 am #

    Vikki, recall that quote from FDR, “The only thing we have to fear is fear itself.”

    Well okay, with MS there is more to it than that. But the point remains that how we view something is huge and will likely have a large impact. Although I’m using a rollator in the house lately, I did come out of figure skating retirement in 2010 for a brief 15 minutes–after contemplating it for two months and telling no one until later.

    Why? Because I wanted only positive, “can-do” thoughts in my head. Obvious warnings could have led to missteps, fear, falls…even an ER visit. This was mostly mental determination. Likewise, how I now view and respond currently have impact–for those around me, and, perhaps more impactful, for myself.

    The way of life now may have limitations, but we still have choices. I like for mine to be with some aspect of strength. I am of the mind to break through the ice of fear and opt instead for courage.

    • Vikki May 20, 2017 at 7:37 pm #

      Thank you Jan I am going to watch the ted talk tonight as I rest after a wonderful afternoon. I battled through my bad day and did the MS Walk today. I agree with you that a positive attitude does absolutely help and my neurologist sends newly diagnosed patients to me to gain perspective that MS is not a death sentence. Keep those “can-do” thoughts going!

  31. Jan May 20, 2017 at 10:54 am #

    Oh, wow.

    This just came into my email–well worth my time in viewing the entire TED talk. (It isn’t too long). Struggling with choices? Insight? Perspective? This does not mention where hope comes from, but does offer honest, insightful input to gain perspective:

    https://goo.gl/W8q3Vz

  32. Jane May 20, 2017 at 2:36 pm #

    I love the perspective Richard’s blog presents. Eckhart Tolle tells us the key to happiness and peace is accepting and surrendering to what is. I worried that taking this advice would make me weak, but the opposite is true. I still fight the good fight, but my acceptance of having to use mobility devices makes me stronger in my eyes and in the eyes of my family and friends. My cane and my scooter are my Red Badges of Courage. I ride my scooter with a big smile and the wind blowing my hair. Onward.

    • Jan May 22, 2017 at 6:23 am #

      Jane and Vikki, you are encouraging!

  33. Andrew May 21, 2017 at 5:23 am #

    Ten years ago, my sister was at a “by appointment” moving sale for some select items advertised. She saw a brand new Jazzy power chair. The husband bought it for his wife who refused to have anything to do with it. So they only used it to ride down the long, paved driveway to the mailbox once a day. It was for sale for $275. At the time, my walking was okay with occasional stops for spasm attacks to subside. But a discount price for an expensive item like a power chair was too good to pass up. I knew the likelihood of eventually needing one was possible. I had to spend more for a portable folding ramp. The chair was there if I ever needed it. I took it to several city visits with museums I wanted to tour. I learned that an open front chair feels precarious motoring downhill. So I had to use an old ski technique of zigzagging to not feel like I could topple forward out of it. It also seemed questionable on grass. I kept it charged, though I seldom used it. I also realized that the wife for whom it was purchased was not 6’1″ tall. I later acquired a sleek, all-terrain, rollator after too many falls on uneven outdoor ground. I use it for security only if outdoors. Recently I used it to walk a mile with the local March for Science. I never had anymore outdoor falls when using it. I started Ampyra 18 months ago and have had more strength, stamina, and confidence in my legs. I no longer use a cane indoors. So I decided to find someone who needed a power chair to give it to.
    I have a very dear artist friend, who taught me stone carving many years ago. She developed a hereditary form of adult muscular dystrophy. She cannot use the joy stick on the type of chair I had. So a couple years ago she bought one of the newer folding models with handle bars. It definitely feels safer going downhill. I have given her rides to some medical appointments and her chair is so easy to fold down and put back together. It weighs about 60 lbs., but 25 is the battery, which can be taken off separately so the two can be lifted in and out of a vehicle easily and put together. It also has a carrying case and my friend and her husband have continued their world travels with her portable power chair. So, if I ever decide it is time for another power chair, that will be my choice.

  34. Sue in TX May 23, 2017 at 10:46 pm #

    I fancy an english rolling cane. I’d love to try it out. One regular cane isnt enough to take weight off my weakest side and two walking sticks tires my arms from swinging. I refused a walker. i have the same hope as Amy H, to be strong enough to use exco skelton when it is available. Maybe because I would look more like a superhero than disabled petson. my private hope didnt feel
    so foolish when i saw she’d like one too. Thanks 🙂

  35. Jan May 24, 2017 at 4:04 pm #

    Will mention that the cane will still work for very short bursts but overall can hurt my posture and back. For longer things, I like the Nova Rollator. Have reached the point where my ability to not withstand is far greater than perceived issues with others. (Note that word, “perceived”). Store mart carts, too. And just 7 years ago, I was walking fast, and such that no one knew. Sigh.

    Another huge blessing is a black drafting chair that my husband ordered a few years ago for the kitchen (thanks to knowing about it from another friend with MS). It raises and lowers an has five wheels to spin around.

    Emotional stress has taken its toll on my health. Aim to work on four facets: stress, sleep, nutrition, exercise (the first two being the hardest; the third problematic–as with parenting, no one book to follow; plus, about everyone is in this to make money). Wouldn’t mind that so much if I could see results.

  36. Kat May 24, 2017 at 5:08 pm #

    I think this is a helpful perspective

    http://www.simplyemma.co.uk/walking-vs-wheelchair-accepting-the-need-for-a-wheelchair/

  37. Jan May 24, 2017 at 10:35 pm #

    Freedom and independence v. struggles, exhaustion, and bruises…hmm. So what choices am I making?

    Kat, thanks much for sharing that link. Great perspective.