Staying on my Feet

So many of you write quite comfortably about your transition from the easy life on your legs to mechanically assisted mobility, electric wheelchairs, Segways or whatever. I wonder if these moves are as emotionally seamless as they read or a tough turn in the road. Maybe you had secret nervous breakdowns, though I doubt it. I make no secret of my own hang-ups. I have written about the phantom wheelchair I see parked in a dusty corner of my mind.
My father and his mother completed their MS journeys in chairs. They accepted mechanical assistance and never seemed to fight it. Obviously, I have taken a different tact. The fact that I routinely set out on New York City expeditions on foot that end up causing me pain and suffering has taught me little. I imagine getting into trouble and even putting myself into danger the same way again. Why?
I believe there was a time I saw staying on my feet as a virtue. I was fighting and winning against a foe I know will not be vanquished. I understand the emotional payoff for remaining standing for as long as we can. Passing that point without seeing it is a trap. There are no checkered flags stuck into the soft earth as markers. Each person’s line is in a different place. Some of us are smart enough to see the border and know that change is in the air.
Or should be.
My vision is flawed, and my eyes are closed, anyway. I do not see what I want to avoid confronting. It is not that I need some device that moves to sit on right now. I do recognize my time may be rapidly approaching, however, and I am unprepared. I want to deconstruct this phobia of mine.
Maybe I cannot handle reality. Perhaps I should grow up and stop projecting my fears onto others. Maybe it is time to see that whenever I make a change, the sun will come up the next morning. My family still will be around me. I will continue to write and fight the good fight. And I will be me.
Nah. Too mature.

61 Responses to Staying on my Feet

  1. Sally September 9, 2014 at 1:42 pm #

    Yep, growing up is overrated. Denial kept me going strong for years. When reality hits, oh and it does, it’s a complete shock. So, I just have to start all over again…and I do. Dam the torpedoes……….

    • anne September 9, 2014 at 2:53 pm #

      I’ve been using a cane, walker for a while and I just ordered and am waiting for an superlight electric wheelchair, just to go to a flea market…
      I think u are a brave man to try and negotiate the city streets..
      I live in NJ and used to do family outings to see shows. And now the only time I come into the city is to the Tisch Symposium….
      Maybe I’ll learn to drive it by then… another chapter opens…..

      • Richard M. Cohen September 9, 2014 at 3:04 pm #

        Keep going.

        R.

    • Richard M. Cohen September 9, 2014 at 3:01 pm #

      That has worked for me so far, but I wonder about just down the road.

      R.

    • Richard M. Cohen September 9, 2014 at 3:05 pm #

      Has worked so far. What about the future?

      R.

  2. Anne September 9, 2014 at 3:06 pm #

    I am limited in the amount of time I can stand or walk, it is my spine that simply gives out and I must sit. I broke down and finally bought a transport wheelchair. If I want to go shopping I will throw it in the back of the car. If I am only going to one store, I won’t take it as I think I won’t be too long on my feet and I too am fighting to stand on my own for as long as possible.

    Yesterday my husband and I had to go to the bank and then to the drugstore to pick up a prescription. I didn’t think I would need the wheelchair. Well, I ended up being in the bank way longer than I planned. When we get to the drugstore I said I would wait in the car because I had already been standing for too long. It was a very hot day so I had all the windows open while I was waiting. Then a big gust of wind blows in the car and my handicap parking pass blows out.

    I certainly gave all the onlookers a show. Cane in hand I am chasing the parking permit across the parking lot. Running is just a memory for me. I was able to stop it from blowing by putting my cane on top of it. I must of been quite the sight. As I’m walking back to my car, I am hoping my purse is still in the car and it was. My lesson was to have the wheelchair available in case I need to use it.

    We all need to be strong and not worry about using mobility aids. They will allow us to get out and about more. I say walk as long as you safely can but don’t be afraid of the time when you need to start using a wheelchair. I keep telling myself that its better to participate in life using a chair then staying home and missing out.

    Stay safe Richard.

    • Richard M. Cohen September 9, 2014 at 4:59 pm #

      For me the critical issue is how far is the walk? I am only good for about two city blocks.

      R.

  3. anne September 9, 2014 at 3:17 pm #

    When I was first DX in 2004, they said I would be in wheelchair shortly, I too thought not me. I have continued folk dancing, which all drs count as exercise btw… but have found it difficult to manage the stores…. and flea market is on a hill with gravel, hard to manage the walker…. so i will bite the bullet so I don’t miss out because it’s too difficult for everyone else …..my parents offered to buy the chair for me… so it’s on it’s way….mayb nobody will catch me soon..

    • Richard M. Cohen September 9, 2014 at 5:02 pm #

      Isn’t it a question of timing? When you are ready, you’re ready.

      R.

  4. Joan September 9, 2014 at 4:28 pm #

    I started with a cane first, and I was SO embarrassed. What was that about? Then I needed a walker, so the cane was not so embarrassing. Now I occasionally use a chair. Grudgingly. So I wouldn’t call my transition seamless at all. The goalposts of graceful acceptance seem to keep moving, but damn, don’t we ALWAYS have it to work on?

    Do it your way Richard, whatever that is in any given moment. There are no rules and if there were they’d likely change every time you needed them.

    • Richard M. Cohen September 9, 2014 at 5:04 pm #

      I am with you on this.

      R.

  5. Elizabeth September 9, 2014 at 4:39 pm #

    Oh my goodness Richard, how proud are you of Meredith? Only half way into the second show and I am hooked. I fell in love with her on the Today show but the breadth and depth of her compassion in the show’s content is unmatched. Your family is beautiful. I loved the surprise of bringing your sons to the debut. Meredith is so genuine. You are a lucky man. Next I need to pick your brain about the vision loss. Was it neuritis from the beginning or did you have other issues that transitioned into the loss of vision. I don’t go longer than 4 months without a case of uveitis (iritis) which is putting me down right now. I feel like I’m having a stroke, disorientation, aura, monster headache, and weakness. I have a stash of steroid drops, and now dilation drops, but it’s so frustrating, I don’t know how you have handle sight issues for so long. Boy do we take things like our senses for granted.

    • Richard M. Cohen September 9, 2014 at 5:13 pm #

      Amen.

      I have had bouts of optic neuritis for more than forty years. It is chiseling away at my vision and is unstoppable. It is treatedwith steroids which may make a small difference.

      And yes, I am proud of Meredith. The kids were too, weren’t they?

      Best,
      R.

  6. Brian September 9, 2014 at 5:06 pm #

    I fought the wheelchair fight for several years for the same reason as you. Mostly pride. But then, there was a concert coming to our area that my wife and I really wanted to see. They were playing at Six Flags amusement park, and since there was no way I could walk that adventure, I rented a scooter from the park and we decided to make a day of it. We had a GREAT time! It was the first time I had really gotten out covered any ground for a long time, and it would take too long to describe all the adventures. The concert? Got rained out. And I mean it rained so hard the park flooded and we were stranded for a little while. But to this day, it remains one of our funny stories and a great memory. To think we could have both missed out because of my pride… I know it’s important to keep fighting. I would just say to pick your battles and don’t cheat yourself out of life. Life is for living, not fighting.

    • Richard M. Cohen September 9, 2014 at 5:15 pm #

      I hear you.

      R.

  7. Erin September 9, 2014 at 5:08 pm #

    I never ever thought I would be in a chair, I vowed to never be in a chair. Then I progressed, and progressed, and little by little, I was unable to go some places. My sons are young, and I was starting to miss a lot of things, because of my mobility issues, I finally agreed to take the plunge, and yes, I have been able to go to many places that I wouldn’t have been able to go without it. But I HATE every single minute of being in that chair, and I only use it when absolutely necessary, I refuse to depend on it, and still I would rather miss something than use the chair, but sometimes, I suck up my pride and use it, but only for the children. I have had many breakdowns over the chair, and I will never be comfortable in it, if people only knew how much walking is taken for granted. Keep up the good fight Richard, and looking good on Meredith’s show, what a beautiful family you have.

    • Richard M. Cohen September 9, 2014 at 5:18 pm #

      Thanks.

      This is going to take a while.

      Best,
      R.

    • Sandra Schneider September 9, 2014 at 6:49 pm #

      Erin, my kids are fairly young, as well. Do to severe fatigue and paraplegia from the MS (can’t sugarcoat it) I miss most things. But, my son is a talented percussionist, so I bite the bullet and go to all of his performances with the huge, clumsy, tilt-recline chair. It kills my back, as I have stenosis and 5 herniated discs.

      Richard, with the mobility devices there is no point of no return. Using one doesn’t mean your MS is worse than struggling along with a cane. If you try a walker and the emotional turmoil is too much, just go back to the cane-consider it a trial run.

      • Richard M. Cohen September 10, 2014 at 12:40 pm #

        But these things take on a life of their own. Very wary.

        R.

      • Sherry Randall September 11, 2014 at 9:21 am #

        Sandra, please research Laser Spine Institute. They may be able to relieve/correct some of your back issues. Their surgery techniques are very minimally invasive, and recovery time is much faster than conventional surgery. While I don’t know much about patients with MS, I do know that they solved my husband’s back problems and we would definitely go there again if we needed to.
        Bless all of you dealing with MS.
        Sherry

  8. Colleen September 9, 2014 at 7:34 pm #

    Hi Richard,

    Love reading about your journey. I came to your blog while researching stem cell transplants. While I am only 14 months (and 3rd medication) into my post diagnosis MS life, I was blind to the symptoms (pun intended) and have had MS for some time. Although I stay optimistic to the point that it is sickening, I am starting to lose my inner optimism. The latest medication (betaseron) is so hard for me. Harder then the IVIG and Copaxone before it. In my young 38 years, I have dealt with the unbearable loss of a fiancé (9/11) and the incredible joy of motherhood (by adoption) but this journey, this uncertainty… Is begining to take its toll. I have lost my sight and regained it, lost my words and found them and the hardest yet was loss my ability to walk independently… Thankfully, I have regained it.

    • Richard M. Cohen September 10, 2014 at 12:46 pm #

      The road has been rough for you. I am sorry. But your journey will not be over until it is over. Keep moving forward, even if an inch at a time.

      Best,
      R.

  9. L September 9, 2014 at 9:44 pm #

    When I try to imagine the worst MS can do to me, I always envision having someone else change my diapers. Being in a wheelchair can’t even compare to that, can it? I’ll do a wheelchair. Being cared for like a helpless infant? Not happening. It’s all relative, I guess. We each have to draw our own lines in the sand. Of course, if/when my wheelchair days arrive, I might find my line in the sand is at a much less horrendous level of degradation/dependency than assisted diaper changes.

    HOPEfully those stem cells will kick into gear soon and remove the wheelchair doom and gloom from your horizon. Maybe hope is a somehow innate form of visualization…ya know, the hocus pocus kind that is supposed to make good things happen? Or maybe it’s like a self-administered placebo with true beneficial effects? Whatever it is, we need it. Keep hoping!

    • Richard M. Cohen September 10, 2014 at 12:50 pm #

      Hope. A difficult concept, a n overusede word with many meanings.

      R.

  10. MB September 9, 2014 at 11:18 pm #

    On Twitter you asked if it was pride or the wish to look normal that makes a person refuse to use a wheelchair or another assistive device. For me the answer is both. I have to use a scooter because I can’t walk without falling. I hate every second of it and I admit I’m embarrassed by it, too.

    I don’t know if I’ll ever adjust to not looking normal. I fought every transition I had to make. I went from holding on to someone, to using a briefcase with a pull handle, to a cane, then to a walker and now the scooter. With the exception of work, I’m a recluse instead of the one hosting the parties.

    I’m sure each transition would have been easier if I looked at it as a sign of strength instead of a sign of weakness. I beat myself up because I wonder if I tried hard enough to stay on my feet. I was never “ready” for each change but I had to make them anyway.

    I don’t know if anyone can ever prepare themselves for the progression of disability. Sometimes reality just smacks you in the face in the form of a floor or a sidewalk.

    Did I mention MS sucks?

    • Richard M. Cohen September 10, 2014 at 12:54 pm #

      Good writing. I am with you on everything. Yeah, it sucks. So dies every disese.

      R.

    • Mark September 10, 2014 at 7:45 pm #

      MB,

      I use a computer case with a pull handle and wheels, too! I feel it gives me support without giving away the MS. I guess one could say I am fighting every transition, too. We are who we are. Just do it your way.

  11. Amy Corcoran-Hunt September 10, 2014 at 9:36 am #

    It’s an awful transition. I went from cane to AFOs to walker to wheelchair in 4 years. I fought every one; they seemed like admissions of defeat. But eventually, they also represent good things like safety and freedom.

    • Richard M. Cohen September 10, 2014 at 12:55 pm #

      You are too smart for me.

      Best,
      R.

  12. Jenny September 10, 2014 at 1:25 pm #

    4 years ago my father passed away. He had Parkinson’s disease. He lived in a two story condo. For years, my siblings and I tried to talk him into buying a single level condo so he wouldn’t have to do stairs. We worried about him constantly. We all felt if he would make some adjustments (assistive devises), his quality of life would improve and he would be able to get out more often. He fell one June day coming out of his bathroom. We found him the next day. 🙁 —— Remember the days when we talked with our aging parents about modifying their activities so they would remain safe so we, the children, would not have to worry about them? These are the reasons I accept the fact I need/choose to use assistive devices. My husband and I built an accessible home and moved into it 2 weeks before my father passed away. He was going to come over and see it the day before he fell. He called and cancelled. I wonder if he would have seen our modifications, would it have persuaded him to move to a safer home and start using assistive devices to keep him safe. Please do what you need to do to keep pushing yourself, but please do it safely.

    • Richard M. Cohen September 11, 2014 at 7:50 am #

      Your dad probably wanted to stay in his own home and convnced himself the disease process was not moving the way you knew it was. There is something about that I respect. Having a debulitating disease and aging are horrible. Scares me.

      R.

  13. Pam September 10, 2014 at 5:17 pm #

    I don’t have any problem with a wheelchair or any assistive device that makes life easier. My mom had polio and was in a wheelchair before I was born. That was all I knew. I thought it would be strange to have a mom that walked. We used to go everywhere, although back then, nothing was made easy for a wheelchair. What bothered me the most though, was other people’s attitude toward my mom. They acted like, since she was in a wheelchair, she must not be able to think, or talk. Even when I was young….8 or so, people would come up to me and my mom, and start asking me questions intended for her. That was so weird. I hope people’s knowledge of disabilities has increased since then. I get along fine now with a single crutch, with only occasional falls. When it gets to the point that I feel limited in what I can do without a wheelchair, I will be first in line!

    • Richard M. Cohen September 11, 2014 at 7:54 am #

      And you think people react to chairs differently now? I think not.

      R.

      • Pam September 11, 2014 at 9:32 am #

        Wheelchairs are much more visible now, because of the the efforts to make public areas more accessible. The novelty is gone. I think it comes down to how much public perception means to you. I like Andrew’s idea, pimp your ride! ha

  14. Sandy September 10, 2014 at 8:34 pm #

    I too have fought every inkling to get a cane, walker, etc. But more than a few bumps and bruises…especially hitting my head convinced me it was time to get a cane and USE IT.

    I have more trouble with my hands than I do my legs. So using even a cane is hard. It gets me around for short periods of time but my hands give out before my legs do. A walker gives me more “hand time” and therefore more time overall to be out and about. I tried one before I bought one. I also bought a used scooter for the big art shows, flea markets and antique shows. I figure too that by the time I need a chair full time it will be a power chair. Even now I can’t get enough power and strength out of my hands to propel a chair.

    At first I used a walking stick from Cabelas because it looked more outdoorsy and less disabled I thought. I dont think I was fooling anyone and people starred at the stick even more than they do the cane. Or maybe I am just used to it.

    I know one thing is true. I should have switched to the cane a few years ago-earlier than I did. I also should have bought a walker two years ago. I missed a lot and feel more than I needed to to prove a point to myself. I dont really know anyone who went to the cane too soon…walker either.

    Richard, I think you will know when its time to get some kind of device. You might wanna try one-rent something snazzy and see if you like it. Then you can take it back and try something else later on.

    Take care and go easy on yourself,
    Sandy

    • Richard M. Cohen September 11, 2014 at 7:57 am #

      Easier said han done.

      R.

  15. Andrew September 11, 2014 at 3:34 am #

    I was very stubborn about my image of how walking with a walker in public would appear. I got an ultimatum from my wife after my 8th fall outdoors: walker or necklace that signals “I’ve fallen and can’t get up.” I chose the walker/actually called a rollator when it has four wheels. Found a sporty model made in Sweden, Volaris, which is very stable on varied terrain. It is also structured so one walks upright within it rather than the hunched over push image I so dreaded. It really makes me more stable, confident, and my stride is more like it used to be. I walk a lot more than I did with just a cane. I also found an old fashioned auto bulb horn that makes a two-tone “oooga” sound that I attached to it. While I am seldom in such a hurry that other walkers, joggers, shoppers, et al, are going too slow, it is more for decoration and whimsical humor. It is amazing how many kids love it and ask me to sound it. I always say, “you can do it for me if you want.” It makes them giggle, and me too. As self image goes, I have always preferred “eccentric” to “pitiful.” But I have to admit, since using my rollator, I have not fallen. It’s seat is adjusted to a height that is right for me. Most seats are just a little to low such that getting up involves a most ungraceful maneuver. With my rollator seat, I enjoy restaurants, outdoor cafes etc so much more always having my own chair. It was a long overdue change for me but I am getting so much more exercise now that I have it. I just wish it had more space for bumper stickers–I could really accessorize if it did.

  16. Andrew September 11, 2014 at 3:43 am #

    My ultimate advice to anyone considering a walker, wheel chair, or scooter—-pimp your ride. Make a statement.

    • Richard M. Cohen September 11, 2014 at 8:03 am #

      Here is a statement. You have a great attitude. I will get there. Someday.

      R.

  17. Sandra Schneider September 11, 2014 at 8:07 am #

    Thought about your reply- a lot. The assistance devices never really took on a life of their own. They are a constant kick in the gut while i use them-a reminder that the MS, with it’s strong tentacles, has strangled a life of it’s own-my life. My daughter took her duct tape to my cane about a year ago and turned it into a multi-colored candy cane, but you can’t polish a turd.

    • Richard September 13, 2014 at 3:00 pm #

      True, I guess.

      R.

  18. Bill Garcia September 11, 2014 at 3:31 pm #

    The day I was diagnosed my two sons and my wife were with me. After we left the neurologist office the first phone call I received was from my then 26 yr old son. He wanted to make sure I was ok. I was obviously upset though I had suspected I had MS for a number of years. With tears in my eyes and a quiver in my throat I told him my biggest fear was winding up in a wheelchair.

    Fastforward 31/2 years. I had to go to the grocery store and my legs weren’t doing particularly well but being the macho man I am I said sure no problem just make a list or I will forget something. When I walked in the lobby of the store there they were all neatly lined up, the motorized shopping carts. Knowing the condition of my legs I felt like that was the thing to do. Then I thought those are for the disabled. The I realized YOU ARE DISABLED MORON!! So I reluctantly climbed aboard. I looked around for buttons and switches and figured out how to work the thing. It felt great.

    I can’t say I didn’t get some strange looks but I really didn’t care. I say if you need it use it. Nothing wrong with it. Nothing to be ashamed of. DAMN THE TORPEDO’S!! Ride like Easy Rider and enjoy the hell out of it. Enjoy your life!!! Don’t let MS ROB YOU OF THAT!!

    • Richard September 13, 2014 at 3:04 pm #

      Funny how long it can take to sderre the obnvious. Then, like a bolt of lightning…

      R.

  19. MB September 11, 2014 at 5:13 pm #

    The “pimp my ride” advocates have a much better attitude than mine. I don’t want to bring any more attention to my disability. If I had a disfiguring scar on my face, I wouldn’t be the type of person to apply makeup to it and turn it into a flower, either, just like I wouldn’t expect someone who couldn’t read to wear a dunce cap. Some things don’t merit being highlighted.

    I guess I’m a pretty private curmudgeon.

    • Richard September 13, 2014 at 3:06 pm #

      I am pretty much in your camp, but we are all differtent.

      R.

  20. Amy Corcoran-Hunt September 11, 2014 at 6:10 pm #

    Pimping the ride is for sending a signal to other people that you do not see yourself as someone to pity, they better talk to you and not whoever you’re with, and life is still good. My opinion. It works. Much of how you feel about yourself is based on how others treat you. A fun ride makes a difference.

    • Richard September 13, 2014 at 3:06 pm #

      Agreed.

      R.

  21. Mark September 11, 2014 at 9:33 pm #

    As today comes to an end, I find myself thinking about the events that took place in the United States on this very day in 2001. I went to four services for friends or colleagues that lost their lives thirteen years ago at the World Trade Center. I am not discounting any of the struggles that we all go through trying to manage MS. But I tried to forget about mine today.

    • Richard September 13, 2014 at 3:08 pm #

      A good coping mechanism.

      R.

  22. Jo September 12, 2014 at 3:45 am #

    When I moved, kicking and screaming, into a powerchair 4 years ago I remember, after only a few days, wishing I had got it before. I had been missing out on going places and doing things because I knew my legs wouldn’t hold out. The chair opened up new possibilities.

    • Richard September 13, 2014 at 3:09 pm #

      That is the irony. A lot of us arte missing something.

      R.

  23. Deb September 12, 2014 at 1:39 pm #

    First of all, thank you for the inspiration you give in your blog through your honesty and transparency. I, too, desire not to use a wheelchair unless I am traveling long distances or need to be somewhere in a hurry. A deep breath and sigh usually accompany that undertaking before I actually sit in the chair. My cane is still the shiny kind from the drugstore because I don’t want people to think it is a permanent fixture. All this to say that I do now use a walker. Due to pride, I resisted using a walker for a long time. What a blessing the walker has been. I know that there are numerous times I would have fallen, but the walker has allowed be to catch myself and stay upright. It has given me so much freedom to go places by myself now. I use the basket or tray to transport items so as to not have my hands full and drop things. Then, if I am in a line, waiting, or need to catch my breath, I can sit and rest for a minute or two. Just wanted to offer this experience as a fellow traveler.

    • Richard September 13, 2014 at 3:12 pm #

      Why do so many of us, includine me, give a rat’s ass what others think. We are projecting, anyway.

      R.

  24. Yvonne September 12, 2014 at 4:22 pm #

    Change is tough enough. Having to change when you have no control is worse. Having to make a change to something preconceived as negative or not normal can be absolutely frightening. So many of us cower at the idea of any device that identifies us as “different”. I fight each transition. My family doesn’t understand why I don’t use a cane in the house even when I know I fall at a any quick move or a dreaded rug or just walking from carpet to tile. They don’t get that those few moments of freedom from a device is important to my stupid ego. I’m slowly acquiescing to the inevitable. Emphasis on slowly. Someone mentioned the Volaris walker from Sweden. I also just purchased that model because I prefer it aesthetically. Have I used it in public yet? Nope. Not there with the mental picture of me using a walker any further than getting my mail. Logical? Nope. For me MS rapid progress isn’t logical because I’m not a neurologist. So the people who don’t understand my illogical decisions aren’t me struggling with MS. So I they can’t relate or begin to understand what decisions a disability causes you to make or why. Buying the Volaris was another step towards reality. Eventually I’ll use it more but for now, I’m still getting use to being un public using my first step which I took a couple years ago, my cane. Torpedoes and logic be damned.

    • Richard September 13, 2014 at 3:14 pm #

      Everything in your own time.

      R.

  25. Betty September 12, 2014 at 4:23 pm #

    Black and blue. The backs of my arms from wrists to elbows take it hard breaking the falls. I still walk a little, use trekking poles, a walker, and a transport wheelchair; whatever it takes to get me where I want to go. A Segway may be next. I wall-walk, jerk and jolt, and groan and gasp, but I keep going. I am over the resentment, insecurity, and embarrassment. 80% of it was my problem. What ratio remains is a living, breathing work in progress. As I move along I make eye contact with everyone I pass, and I make my niceties as normal. Sometimes I do too much, and pay the price. Other times I sit it out. I never say never. Not to the day, the dance, or to the device. The decisions of when, and where and how are still mine, and I’m happy for this. Keep pushing. It’s all relative. Whatever you can do today, try to do it twice, or longer, or better tomorrow. Stay in the game. We’re winning.

    • Richard September 13, 2014 at 3:20 pm #

      I think many are afraid to talk to us. We have to iniitiate any contact. Speaks loudly about comfort level with the sick and disabled.

      R

  26. Yvonne September 12, 2014 at 6:11 pm #

    BTW-Family here this week so hid the walker because they would be too curious and concerned about progressions. So I am being extra careful with my precarious cane walking. They have an ambitious agenda of activity and I struggle to keep up but I don’t want them to stop because of me. Why some of us are still doing this against all logic remains our personal mysteries.

    • Richard September 13, 2014 at 3:22 pm #

      Someday, explain it if you can. I don’t get it. With family?

      R.

      • Yvonne September 13, 2014 at 7:25 pm #

        My family are the type who with the best of intentions smother you. I live alone and they would call every day to check on me and give suggestions on what I should be doing. I like my disease anonymity. They live a few states away so they aren’t aware of the progressions until they see me. I prefer they not suggest what devices I should be using based on someone else experiences. As we can see in this blog, we are all unique in how we deal with disease and no one knows better than me. Family love can be overwhelming sometimes.

  27. Linda September 14, 2014 at 4:52 pm #

    Is there no one who rejects pride or vanity? Why not an assisted mobility device? If one lives long enough, everything becomes limited…vision, mobility, appetite, sexuality, money… I feel great empathy for your suffering. Only wish for you to be without pain, and with peace that comes with the grace of acceptance. Life is such a precious gift. You underestimate us. We do not (all) look at you funny. Give your fellow men and women credit for character and compassion.