Pushing the Limits

When my legs gave out at Grand Central Station yesterday and I barely made it up a flight of stairs, I realized I was in trouble. Police officers and railroad workers came over to offer help. New Yorkers are so misunderstood. I was on my way to a meeting in an office building adjacent to Grand Central and hobbling down an endless corridor. Grand Central is no small place. The train platforms are concrete slabs without end, many leading to steep stairs. Though I had options, that morning I had chosen the hard way. I like trains.
I figured the walk would be manageable and good for me. I do try to keep my legs in motion as much as possible. By the time I got up the stairway to heaven, I knew I had made a mistake. When I neared the end of the concourse, I knew I was in big trouble. And when I saw stairs instead of an elevator, I could only hope to make it to them to sit, instead of hitting the ground full force.
I reached the stairs and sat, clutching a railing. A cop told me the entrance to the building I needed was at the top of the stairs. They might as well have been Everest. It is amazing how far grit and determination will carry you. Once I was in the office building, a maze of long hallways awaited. I arrived at the office and fell into a chair. The meeting was moved to a conference room a few yards away.
I was meeting with the physician who had organized the Vatican stem cell conference we attended last year. When I described my trek in to see her, she looked at me as if she could see how loose the screws were. “Why did you do this,” she gently asked. She was in physical therapy after a double mastectomy caused by breast cancer. She understood the hard work of healing the body.
For years, I have pushed and pushed, I said. Use it or lose it. I am trying so hard to stay out of a wheelchair. I will work as hard as I have to. The trouble is, I continued,, I never know when I am pushing too hard and risking injury. That sort of misses the point. Anyone with MS or another chronic illness should know not to go easy on yourself. Knowing our limits is hard.
Sometimes I overdue it. I left the office yesterday in a wheelchair.

57 Responses to Pushing the Limits

  1. carla August 8, 2014 at 11:11 am #

    I am an OT, and also a person with severe myasthenia gravis. When I still had my career, I often told my patients that it is important to find their limits, but in doing so, they would sometimes pass them, or overdo something. It’s all part of living with a challenge.

    I now practice what I preached. I find struggling and pushing to be far preferable than sitting and watching skills quietly disappear.

    You GO!

    • Richard M. Cohen August 8, 2014 at 8:29 pm #

      Agreed. No regrets.

      R.

      • Richard M. Cohen August 8, 2014 at 8:30 pm #

        Agreed. No regrets.

        R.

  2. Hilary August 8, 2014 at 11:15 am #

    It’s hard to predict when our legs will decide they need a break.

    That is why I always use handicap parking. I get dirty looks and sometimes nasty comments. I can’t predict how my legs will feel at the end of the day or after shopping, or whatever activity I may be attending.

    Would people prefer I risk injury and go on disability? My preference is take precaution and survive as long as I can.

    • Richard M. Cohen August 8, 2014 at 8:32 pm #

      Please ignore those who do not care, anyway,

      R.

  3. Grandma August 8, 2014 at 12:05 pm #

    Richard, are you able to use forearm or Canadian crutches or are your arms and upper body weakened also? I use the forearm crutches and they really help me, but my arms are less affected than my legs.

    • Richard M. Cohen August 8, 2014 at 8:34 pm #

      I just use a cane.,
      R.

  4. Geof August 8, 2014 at 12:36 pm #

    My theory is those who never push themselves to the point of failure have probably come nowhere near their full potential. How are we to know our limits if we never push to them and beyond? As I fail, I try to console myself that building muscle requires the tearing of old so the new may be made stronger.

    I ran across a less than enthusiastic right up on stem cells of use to treat MS today. http://multiple-sclerosis-research.blogspot.com/2014/08/stem-cell-therapies-is-it-all-hype.html

    I note the original article is about heart disease, but the author believes it has implications for MS. I don’t know how the trial you are in is using them, but I hope it gives positive results.

    • Richard M. Cohen August 8, 2014 at 8:37 pm #

      Push and push again. Ask any athlete.

      R.

      • Jan August 11, 2014 at 8:56 pm #

        Ah, just noticed the comments section. Should have looked earlier to respond here.

        This post reminded me of a family trip to Yosemite seven or so years ago, of trying to will my way up a small mountain to follow my family and the string of other tourists who were snaking after them (with me a half-block behind, supposedly waiting on a rock).

        It was hot, humid. (Need I say more?) Never made it to the falls, somewhat collapsed. But was it worth trying, to have legs that melted into spaghetti noodles? To me it was. Failure was better than feeling defeated before even trying. Now I understand my boundaries and respect them better. (Except when I choose not to).

        Yes, athletes do often push, work hard, and keep working to meet a goal. As a former professional figure skater, I did push. I had a goal, then met it. And now I’ve pushed through nine years of MS. But I’m learning to push more wisely. I’m basically a worker bee at heart, not so great at resting.

        There’s a difference between, “You can’t do that; you shouldn’t do that” and “I know I shouldn’t do that, but sometimes I may try, and sometimes not.”

        So who really decides what I can handle, anyway?

        I’ve used a wheelchair a handful of times and don’t like it. Except when I can swallow my pride and manage to be grateful for the opportunities of places it allows me to be that I otherwise couldn’t attend (such as at the Arboretum, pushed by my rather athletic husband).

        So, a rolling rescue you had after a personal, yet difficult adventure to which many of us can relate in some way (whether or not it may appear as such at first glance) I think is okay. Glad you were safe. And after some years, many of us know our limits and respect them. Except when we don’t. When we then take some refuge, some joy, in the trying.

        btw, meds-free for all nine years. Now grain-free, dairy-free, and trying to better manage my stress/resting–it’s all helping.

  5. Joan August 8, 2014 at 12:50 pm #

    This was timely…I fell yesterday. I’m no Einstein but feel I possess a fair amount of intellect, yet I can usually trace my falls back to pushing it. There’s a moment when I know I’ve gone too far but I keep pressing. It’s that primal need to just be normal, to be able to do what all the other kids do. My progression has been that when I stop doing “A”, I can’t do “A” ever again. So I keep thinking I need to still try. Is that admirable, or denial…don’t know.

    Richard, you do make me think, and feel that I’m not alone. Thanks for that.

    • Richard M. Cohen August 8, 2014 at 8:38 pm #

      Push and push some more.

      R.

    • Louise August 10, 2014 at 7:29 pm #

      With this disease I feel I should be admired for my denial, You say denial, I say living.

  6. jill August 8, 2014 at 12:56 pm #

    I use my walker if I know I’m going to have to do some long walking. Like you, I will keep walking to keep myself out of the wheelchair. But I am very seldom by myself; also retired, so not needing to be out and about too much….just the occasional Dr. appts. I don’t have the guts to be out by myself anymore, as my fear is a nut seeing my disability will rob me or carjack me, knowing I can’t run after them, much less fight back. I’m female, so that just makes me an even easier target. I live in a suburb of Atlanta and we drive to our destinations so as not using public transpotation. The subway doesn’t come out this way. I have a walking stick in my right hand and a strong male hand on my left when needed and believe me that hand has kept me from taking a few tumbles. I just walk VERY slow.

    • Richard M. Cohen August 8, 2014 at 8:41 pm #

      Speed does not matter.

      R,

  7. MB August 8, 2014 at 1:07 pm #

    I don’t know.

    It seems like the attitude out there of the chronically healthy is that if you use some type of crutch, you haven’t tried hard enough or pushed yourself far enough. (“I would do whatever it took…”)

    That seems to be the thinking I’m seeing here, too.

    When I read these responses, sitting on my wheeled legs, I start to question if I tried hard enough. Regardless of the thoughts and mounting accidents I had that went into the agonizing decision to “give up,” I again question if I could have done more.

    People in wheelchairs or scooters are tortured and judged in every direction; by the healthy, by the more able sick, and internally. I know it’s a personal choice and I get that. But damn. Just damn. I knew I’d hate this post.

    • Richard M. Cohen August 8, 2014 at 8:44 pm #

      The post is about what we shoul do, not what we should have done. Cut yourself slack. All of us do the best we can.

      R.

    • Jan August 11, 2014 at 9:30 pm #

      Please be easy on yourself and remember a thought that I say to both myself and my sister: “We make the best decisions we can at the time.”

      And I think that we do. There are often many branches springing from one tree, a host of decisions to make. As with parenting, we all try the best we can at the time, and there is no one “right way manual.” It’s all complex. Don’t look back. Look at what you CAN do now, not what you can’t. No one ever has the benefit of a crystal ball into the future.

  8. Erin August 8, 2014 at 2:21 pm #

    I too have dreaded the wheelchair, my first question when diagnosed 7 years ago was if I would ever be in one. I finally caved when the opportunity came to go on a vacation I would never be able to go on without it. The day it was delivered, I cried the whole day…i am way too young for this dammit! Many feel if I had only….taken better care of myself, exercised more, stopped stressing so much, learn to appreciate everything, just accept it, or ( insert suggestion here )….that maybe I wouldn’t have progressed so much. Wow…people’s suggestions, and supposed knowledge of MS can really make one feel like crap sometimes. Like would I really have chosen this if given the choice? Do people really think if it were that easy, I would be like this? Don’t be too hard on yourself Richard, we do the best we can with what we were given. Hang in there, hope you are feeling well.

    • Richard M. Cohen August 8, 2014 at 8:50 pm #

      And you should cut yourself slack. I so dislike second guessers. Live your life as best you can. The hjell with the ohers. Is this even legible?:

      R.

    • Jan August 11, 2014 at 9:48 pm #

      You’ve had MS for seven years; I’ve endured for nine. Last year, we rented a wheelchair for a month for a son’s H.S. graduation and a subsequent family vacation. I didn’t like it either. Prior to the graduation, we took it to a local arboretum to see the Dale Chihuly glass exhibit. I cried, too–but mostly just when we got there and I sat in it, before I appreciated the scenery and pushing from my husband.

      And guess what? We all got the Norovirus in Yellowstone, and two kids used the thing en route to the ER. (Rather handy it was then).

      Life is about perspective.

      We rented one again at the start of this summer for another son’s H.S. graduation. (I seriously could have made it through with a cane, but caved in favor of the possibility of not making other family members uncomfortable in potentially watching me struggle… because they asked). But guess what? I didn’t have to even think about struggling. (That was rather nice). That also meant that we had a month of “walks” with my husband around the neighborhood, something I can’t do in the heat (or anytime, really).

      Life is about perspective.

      I’m too young, too. (I also look younger than I am, or so I’ve been told. Maybe by nice people just being, well, nice).

      And that wheeled thing, or MS itself, does not define who I am as a person. While I’d never say, “Bring it on,” since I do have it, my life has been enhanced by it in many ways, mostly in matters of perspective in relating to others.

      We aren’t the only ones with issues. Don’t make MS more disabling emotionally than it can be physically. (Incidentally, I have a blue car placard but am still, after nine years, rather uncomfortable with saying I have a “disability” or “handicap.” Instead, I have a health issue that warrants a blue/handicapped car placard. Denial? Hmm, after nine years, hardly. Semantics, maybe–but it works for me).

      • Chris August 19, 2014 at 2:10 am #

        My mother had MS for 60 years, she experienced the numbness at about age 19 or 20 and finally found a doctor who diagnosed her at 29. Growing up you couldn’t buy a wheelchair, so my parents would borrow a chair from the local mortuary when we would go to Chicago for the day. Back then Chicago had revolving doors – so we went into museums and restaurants and theaters thru the alley entrances and ride the freight elevators. People would stop and stare at mom because very few people in wheelchairs were seen in public! She walked with a cane until I turned 15. Her strength and determination were what kept her going. She had three girls a year apart – and had lost her sight when I was born. doctors told her to take naps, to rest and she told them she had children to raise! She is my inspiration. I only wish she could have had the support of a blog like this to share with others. I found this blog and thank you for this- it helps me understand more of what my mother faced.

  9. Jenny August 8, 2014 at 5:14 pm #

    Pushing the limit for anyone is a very individual act. For some, pushing through the fogginess of their sight trying to read is pushing the limit. For others, getting out of bed, showered and dressed is pushing the limit. No one should feel guilty for any choices they have made to deal with this disease. I choose to use my scooter instead of my walker because it affords me more energy during the day, to be a more productive person. Others may choose to use a cane or a walker to keep moving. Still others may choose to sit because sitting is pushing their limits. We all make our own decisions and must live with them. I, for one, am proud of the way I push my limits.

    • Richard M. Cohen August 8, 2014 at 8:53 pm #

      And you should ne. Do your o wn ting abd do not lo ok ba ck.

      R.

  10. Amy Corcoran-Hunt August 8, 2014 at 6:16 pm #

    Been there. Not an easy thing. And not easy when The Wheelchair is viewed as The Big Give-Up. I brought The Wheelchair on a couple years ago, the docs didn’t tell me, I told them. It’s not nearly as sucky as struggling and wiping out and spending all your energy on that nonsense. My experience, my opinion.

    • Richard M. Cohen August 8, 2014 at 8:54 pm #

      And I respec it.

      Best,
      R.

  11. Yvonne August 8, 2014 at 9:39 pm #

    I too push because I don’t want to go “all in” yet. So,sometimes it’s a cane and sometimes it’s a walker depending on distance AND event. It’s easier to transition when ego isn’t involved but unfortunately I’m not evolved enough to not care about appearance of the level of disability. So I push. The only place I have finally acquiesced is the airport. Appearance be damned. I am not up for the long TSA line, gate changes etc. I wear my cutest shoes and accept wheelchair service because I know I am not up for that challenge anymore! BUT…when asked if I can walk through or do I prefer to sit and be “wand”, I walk through as my one act of independence from the wheelchair 🙂 As long as I can I will walk/hobble and push that boundary but I am always looking for seat on the journey…just in case.

    • Richard M. Cohen August 9, 2014 at 8:52 am #

      I use a chair at the airport, too. Spares me an overnight trip to the gate. The New York Times ran a piece awhile back about healthy people using chairs and jumping out after security. Everyone wnts to be disbled.

      R.

      • Yvonne August 9, 2014 at 3:57 pm #

        Whenever I see that happen it infuriates me. I am hesitate to say something but they get the evil eye with the shaking of the head. I hope there is a special karma whammy coming in their future.

  12. Andrew August 9, 2014 at 12:28 am #

    This is among the many challenging issues we face. I totally empathize with the incredible individual decisions each of us must reach. I, too, wanted to maintain my image of “pushing” to “use it or loose it.” I found myself becoming much slower and cautious with each step to be sure my foot actually lifted and placed solidly on the ground before moving the next foot–this with a cane for support. I love being outdoors and live in a beautiful place with many hiking, biking and walking trails. Going to the gym to use a treadmill (with rails to hold onto) seemed a let down from former years of long, daily walks in the National Forrest with my dog. But I know that walking is an essential exercise for me to maintain.
    My past year has been one of more falls outdoors than in all my entire life prior. I became even more cautious because when my butt gets lower than my knees, my legs seem unable to get any messages I try to send, thus are dead weight. If I can’t find something to roll to that I can use to pull myself up, I’m stuck. All but one fall, I had my cell phone in my pocket and was able to call for help if needed. When I fell in the snow at the end of my driveway, going to the mail box, two strangers driving by stopped and helped me up. My gratitude for the timely help almost exceeded my humiliation at having to explain why I am unable to get myself up.
    But I have a totally happy turn around to this. My wife told me she was going to stage an intervention if I didn’t make a choice to either get a “I’ve fallen and can’t get up” necklace or start using a walker when I went outdoors. The first choice had too many ‘pitiful’ connotations in my mind and the second gave me images of hunched over posture and shuffling gate. I did some research online and found a rollator that was highly rated by people with MS. I watched a video of a woman who used her “Volaris” rollator as she walked across a grassy park, to a woodland trail, and came out on a sandy beach. Further, it claimed it’s design allowed for upright posture rather than leaning forward. It looked sporty and not like any of the walkers I saw in the brigade to the dining room when my mother was in an assisted living complex. The model is made in Sweden and specially designed for “all terrain” and has a simple technique for climbing curbs (but not designed for multiple stairs). It is light-weight and folds with a one handed move so it can be conveniently put in a car to transport. Since I got mine in June, I have not had a single fall or near stumble. I walk upright, briskly and am able to look around and not down at my feet. Wearing a “fitbit” pedometer device, I measured 28 miles total last week. I am so confident walking outdoors and can pause and sit on it if I need to take a break. When my legs get that quaking, electrical buzzing feeling, I can pause or keep going knowing I have this support holding me up. It seemed like a necessary but defeated step to have to start using a cane years ago, but my all-terrain, snappy sports car like rollator has given me a totally new lease on life with challenged mobility.

    • Richard M. Cohen August 9, 2014 at 8:58 am #

      There are devices coming to market all the time. I am biding time before making any transition.

      R.

  13. Mark August 9, 2014 at 6:44 am #

    Thank you for sharing, Richard. Like you and the others, I have similar stories. I enjoy being outdoors and will continue to walk (trip, slide, hobble and fall) in the woods now that autumn is approaching. Bruised shins, knees and ego’s aside, I feel that if I don’t use what’s left, I’ll lose what’s left.

    • Richard M. Cohen August 9, 2014 at 8:59 am #

      I am with you.

      R.

  14. MB August 9, 2014 at 11:50 am #

    Now I’m curious.

    How many blog respondents still work where walking to meetings, between buildings on campuses, etc. is necessary? Is it possible to push your limits, arrive trashed at a meeting, and continue on with a work day?

    I’ve never considered myself to be a quitter either (and I still don’t), but being able to continue my career was a factor in deciding to use assistive wheels. Like I said above. Daaaammmmn.

    • Mark August 9, 2014 at 1:27 pm #

      MB- Yes, I still work and walk to meetings. Fortunately, all the meetings are in the same building. From time to time I have to attend meetings at certain corporate parks where walking from building to building is required. I ask for a ride. I would not be able to complete a full day if I had to walk around campuses and still perform. How do you do it? Are the wheels helpful?

    • Linda Lazarus August 9, 2014 at 7:16 pm #

      MB,
      I use a Segway. It is a great vehicle for a campus setting. Gyroscopes make it balance and I have never fallen off of it. It is a sophisticated piece of engineering.

      • Sandy August 10, 2014 at 9:35 pm #

        Not long after Segway came out the same company made a wheelchair that climbed stairs. They took it to DC and had it climb the steps of the Capital. It was so cool. The ride is facing away from the steps and it has pairs of small wheels on the back that rotate on a bracket and actually climb the stairs. It is freaky cool.
        I just bought my first (used) scooter so I could go to art shows, antique shows etc. Its a big step for me but I have missed going to shows and I know I cannot walk the whole way and get back to my car at the end of the day.
        I also noticed that when I just use my cane my lower back tenses up and I have back pain. If I use my walker I can walk with my back relaxed and I last longer.
        Figuring out MS is a huge challenge. Knowing where your boundaries are is a full time job. Then trying to figure out which assistive device is best is another challenge.
        So now i have a bevy of canes to match every outfit. a walker and a scooter. I am thinking of a hovercraft or jet pack next.

        I push my boundaries and cross lines I should not cross every chance I get. But I never know exactly where the line is until I cross it.

        Sandy

    • Richard M. Cohen August 9, 2014 at 8:23 pm #

      I still do not have it right.

      R.

    • Amy Corcoran-Hunt August 9, 2014 at 8:34 pm #

      MB: Wheels help me work. No question. Also, I work in a young, image business: advertising and tech. And I am not young. I look a hell of a lot more vital tooling around in a wheelchair than falling down and needing two fellas to get me up. It’s a hard decision to make. I try to see the upside. Wheels help me be independent and more focused on my actual job.

  15. Jeff August 9, 2014 at 1:40 pm #

    I think you have to know when to push. If you are going to be going to a meeting where you will be dog tired and useless, don’t push. But if you are going somewhere where you can rest upon arriving, push a bit. I try to push myself as much as I can, I believe in “use it or lose it” for us MSers. It’s tough though, my instinct is not to push. It’s safer on the couch, I don’t like the feeling of struggling to walk. I find myself continually having to remind myself that I will be more satisfied in the end if I learn how to embrace the struggle, think of it as working towards improving.

    I agree with Richard’s advice on not reflecting on the past too much. What we did yesterday is what it is, as is the situation we are in now. I once got the chance to meet the great John Wooden (UCLA coach) and I asked him about how he motivted his players. His answer was to focus on what you are doing right now, not yesterday and not tomorrow. What are you doing right this second to work towards your goal. Wise man.

    • Mark August 9, 2014 at 4:44 pm #

      That was a good catch, Jeff. You’re right. One should know when to push and when to go easy. After dealing with MS for a while we should know how much fuel is in our tank, so to speak. I think I do that subconsciously but neglected to mention it to MB (Sorry MB–it wasn’t intentional).

    • Richard M. Cohen August 9, 2014 at 8:25 pm #

      Agreed.

      R./

  16. JoanBee August 9, 2014 at 4:40 pm #

    I’m seriously considering getting over what I’d look like, and buying an electric adult tricycle. The beauty of them is that you can pedal as much or as little as you want, but either way, you can cover a lot more ground than you would without the little motor. They even have recumbent ones that sort of look cool, but I can’t figure out how I’d get back up from one of those.

    I figure that pedaling a little is better than not at all. If any of you miss cycling like I do, you should take a look at them!

    • Linda Lazarus August 9, 2014 at 7:17 pm #

      Check out Palmer electric vehicle…the company is in NY. I have a wonderful vehicle to travel about with.

    • Richard M. Cohen August 9, 2014 at 8:26 pm #

      I will.

      R.

  17. JoanBee August 10, 2014 at 9:22 am #

    Also worksmancycles.com and elecricricrecumbenttrikes.com.

    As far as I know, they are street legal most anywhere. And the motors are so small and quiet that most people won’t even know. That means you could probably get away with trail and park riding.

    I dream of going out on a picnic ride with family and friends again. That would be wonderful.

    • Richard August 10, 2014 at 7:36 pm #

      Will look in to.

      Best,
      R.

  18. Yvonne August 10, 2014 at 11:33 am #

    I had to come back one more experience with pushing the limits. Laundry. I had company this weekend which means I had an additional bed to make and towels to arrange. EXHAUSTING but I pushed through so everything would look nice for their visit. Today I have to strip beds and wash linens. I will not be able to do anything else because I will be EXHAUSTED. I enjoy the visit from friends but I really do push myself to the limits to be accommodating. I usually do not use a walker during these visits. Trying to be the college girls from 1980 for one weekend more, I pushed. Writing this propped up on a pillow dreading laundry knowing I will be wiped out.

    • Richard August 10, 2014 at 7:39 pm #

      Can’t you get he lp

      Can;t you h get help?

      R,

      • Yvonne August 10, 2014 at 9:18 pm #

        I do have someone come in once a month to do the heavy cleaning. I do laundry usually in small loads to curtail the level of fatigue. Unfortunately my visitors came after my cleaning lady had come for the month. Budget only allows for once a month. My company isn’t messy so no problem with quick “Swifter”(love that product) cleaning afterwards. It’s the laundry, making and unmaking of guest bed and towels is EXHAUSTING. That’s where the pushing comes in. I hate to ask guest to make their own bed and then put the sheets and towels in the laundry on their way out. It’s so counter to guest protocol that I know. so I Smile, wave goodbye and exhaust myself. Another way we push ourselves to keep some semblance of what use to be a “norm”. I almost don’t look forward to the visit because of the after work but MS will not rob me of these visits with friends.

  19. MB August 10, 2014 at 11:59 pm #

    Thanks for your responses to my question, everyone. What really screwed me up was losing the use of my dominant hand/arm after developing foot drop. It was hard to balance and use a cane when one half of the body was not functioning. Probably should try at home again, though (I fell way too many times at work to try it there again.) A therapist told me I could try velcro-ing my dead hand to a walker handle to help me with my balance.

    Just once it would be nice if every single stinking thing wasn’t a struggle. I think I’m just getting tired.

    • Yvonne August 11, 2014 at 7:53 pm #

      MB-I find eating ice cream isn’t a struggle even though my dominate side has also been weakened and foot drop on that side makes doing most things a struggle. That goodness I don’t eat with my foot and ice cream eating can be done with either hand 🙂 Don’t get tired MB. Get determined. And have some ice cream. As long as you’re not lactose intolerant or diabetic. Then you ‘d really be screwed. Keep swinging MB.

  20. Darren August 13, 2014 at 1:29 am #

    I’m one of the Hartford group that you met in New York City. You were the topic of discussion at my infusion therapy today. Last week I had a flare up that required a five day course of steroids. I felt fine on Friday and then the steroid crash came. There is quite a distance from where you park at the center to where you get your infusion done. Needless to say I barely made it with my walker to the infusion suite. Upon entering another from the group Mike said to me why didn’t you take a wheelchair. And I said I thought in my head it wouldn’t be this hard which led to a discussion about this very blog post that you put up. I probably knew when I arrived that I should’ve use a wheelchair however logic did not prevail. There are probably many reasons why I should have however at that time there was one course of action that made sense…..my way.

    • Isa Fores August 19, 2014 at 5:24 pm #

      yes , I feel that way a lot, I use crtuches when I need to. but should use more…
      …. at what point do I purchase a wheel chair…. It stops me from going or doing a lot… I keep hoping my legs will just get better, so I won’t buy it yet! but it’ been years.. so maybe it’s time… hmmm … does innsurance pay for that??

  21. Wendygilmo August 15, 2014 at 1:12 am #

    Wow! This post was very powerful. I remember walking …….and the agonizing stress I felt walking from the parking lot to the destination. Now i use the scooter all the time. I found myself not wanting to do anything or go anywhere because it was way too difficult. The scooter affords me an immense amount of freedom. I’m very happy to have a scooter… But I can’t get rid of the guilt. I do feel very guilty for not pushing harder. Next month I’m going to try out the Exoskeleton walking suit at a rehab center. My dream is that my body will feel the sensation of walking again and that soon, I will be able to do it on my own. I hope it’s not just a dream!

  22. Isa Fores August 19, 2014 at 5:18 pm #

    I have something chronic just like MS and Fibromyalgia, (Fluorquinolone toxicity syndrome) and my legs only have so many steps at a time as well…. some days zero steps, some days 50. …. I wish there was a law that required all stores to have a bench or chair inside for the disabled.. this is my one wish!!! I find it prevents me from being able to go anywhere, unless I decide to do the “wheelchair thing” but I like to try and push my legs as far as I can, just need to sit and rest. I too get the looks with my handicapped parking card, cuz I’m, 46.. and don;t “look” sick. One lady even took my picture as I had just returned to the car to sit and rest. They have no idea the constant pain I suffer and hours of bed and couch time because I just can’ t move. I finally get out for small ride in car once a week, with my husband to get a coffee and they think I’m faking ??? Like I like this?? I was the person pre- sick, who would park the farthest to get the extra workout walk ! Oh well, I guess we need to educate them. But let’s get chairs out for us somehow!!!! thanks for the blog!!

  23. Esther Vasa September 2, 2014 at 9:47 am #

    I fully know what you’re talking about Richard. I push hard, hide symptoms (read basic life functions challenges) and suddenly it becomes almost impossible to hide. This is something I see every now and the . When that “every now and then” becomes often, I wonder…

    Praying that the second stem cell infusion would do you something good.