SSDI, GBS and motorcycle riding

    • Anonymous
      February 17, 2012 at 2:18 am

      I was hit hard with GBS on 05/10. Came very close to kicking the bucket and 2 months unconscious.Spent over 9 months in hospitals and rehab facilities. My carrot at the end of the stick was getting back on my bike, a 2004 BMW. Not a day has gone by since July ’10 that I haven’t thought of riding again. At one point in the last 6 months of my hospital stay I was given the use of a powerchair since I wasn’t strong enough to push a manual chair. The OT and PT dept put blue and white BMW logo’s on the chair to encourage me. I applied for SSDI in July ’10 and it was approved by November of that year. It came none too soon. Ok, it’s now 13 months later and I’m getting stronger each day and still dreaming of riding. I guess I’ve been not wanting to think of any other possibility but I am now starting to realize I may be putting my income in jeopardy by trying to ride. I am 56 and was in the tower construction industry and there’s very little chance I could ever go back to what I’m trained to do. The work is simply to physically demanding and I don’t have to tell any of you what the residuals of GBS are. It takes very little work to do me in for a day. I know of the inherent dangers of riding. But will the SS administration basically “can” my benefits for riding? I have paid into this system for 40 yrs. I am grateful it’s there and I’m not ashamed to be using it.

    • Anonymous
      February 17, 2012 at 1:21 pm


      It seems that if you continue to improve, you may have a decision to make. Continue on SSDI or choose the freedom of the open road. I am almost 3 years into recovery but my story is a bit different than yours. At 15 months into recovery, I did something out of character for me and bought a bike……and despite the apparent dangers associated with bikes, I’m loving it. (I was 59 when I bought the bike). Your immediate challenge is to become healthy enough so that you can ride your bike again. You need to realize that not every GBS sufferer is lucky enough to have the options that you may soon have. Good luck with your decision.

    • Anonymous
      February 17, 2012 at 3:38 pm

      I don’t understand. You aren’t allowed to do certain activities if you are on SSD?

    • Anonymous
      February 19, 2012 at 10:16 pm

      As I understand it (from Social Security’s point of view) if a person is healthy enough to ride a motorcycle then he’s healthy enough to work. I understand that to a point. My bike has been my “carrot at the end of the stick” for me. The thought of riding again has been a strong motivation for me. But I can’t take the risk of losing my disability status just for a weekly 30 minute ride. I’d love to return to work but the demands of my profession won’t permit it. (for now)

    • February 21, 2012 at 9:37 pm

      a two wheel motorcycle might be questionable (which I both can and can’t understand because it sounds like one of those loopholes that only the govt can put into place) but what about a three wheel (yes I understand it is not the same…see below)? Still get to enjoy the open road but have other issues of safety and such taken care of. I don’t know if this is an option for you but trust me I do understand your plight. This stuff has taken away so much from us that the one thing we find freedom and enjoyment in might also be taken away if we don’t play by the rules. Just because you could enjoy a ride does not mean it wouldn’t put you in bed for a few days, so how that can be turned around saying if you can ride for a couple of hours then you can work too. Not sure how you are doing but I know that after almost 6 years post gbs I still don’t have a clue what my limitations are because they vary so much…sometimes even an hours time can cause a flare up or melt down. I really hope that you get to ride again, it sounds like you enjoy and miss it very much, and I hope that it doesn’t interfere with other things. Sometimes we have to have SOMETHING to look forward to, to keep us sane, to give us hope. Please look into this and ask around for clear answers. I want to hear of your adventures and fun!
      I have a hot rod that is parked and needs work to get her back on the road. She is a manual and I realized not too long ago that there is a huge chance I do not have the strength to drive her or work the clutch anymore. She has been the only car I dreamed of owning since I was 14. Got her in my early 20’s and she has been sitting waiting for money and time for a couple of years prior to me getting sick. I dream of being behind the wheel again, SO said we could convert her to an automatic—we won’t discuss my reaction or feelings about that—-but the reality of my own situation is I may never drive that car again and it really hurts to think gbs has more than likely taken one more hope away from me.

    • Anonymous
      February 22, 2012 at 8:45 pm

      I tried and tried for years to hold down a full-time job and finally gave in and applied for SSDI. It took a year (with a lawyer) to get it and at 54 I’m accepting that this is the best it will get physically. My depression is a little less without the stress of working and I won’t do anything to upset the SS people. Be careful about posts on facebook as I have heard that it is watched by our government. This site may be also…but if they did poke their noses in here they would award SSDI much more quickly when they see what we go through.

      Close your eyes and visualize that ride!!!

    • Anonymous
      February 22, 2012 at 11:03 pm

      Well I don’t use facebook so no worries there. I don’t have any secrets, I’ve made no secret that I want to ride but I won’t jeopardize my immediate future by doing something dumb. I wish I could go back and do what I used to but I can’t see that happening at my age–will be 57 in a month. I’m thankful that I got SSDI first time applying but even then I went 7 months without income. Had it not been for answered prayers we would have lost our home. The bike’s not eating any hay so I’ll let it sit a while and see what happens. Fiddling and twiddling with it helps my hands anyway.

    • Anonymous
      February 26, 2012 at 5:09 am

      I spoke with my DRS counselor (Dept of Rehab Services) yesterday and he told me he had not heard of motorcycling being a valid reason for jeopardizing SSDI. (at least in this context) His point to me was that there is so much to be considered with an illness like GBS that it would be difficult to make a case for disavowing benefits based on occassionally taking a ride. BUT–that being said — I intend to proceed with caution, and I’m not putting my bike up for sale just yet!

    • Anonymous
      February 27, 2012 at 7:26 pm

      We have a RV at a ATV park. I ride with my younger kids. Nothing extreme but never the less things can happen. I am 52. Got GBS Oct ’11. Still using walker. Obviously I am not ready to ride but was hoping to be able to be able to one day. I have applied for disability. Just because you can do something occassionally for several hours doesn’t mean you can do it for 40 hrs/week, 52 weeks per year. I don’t want to just sit in my lazy boy chair the rest of my life.

    • Anonymous
      March 2, 2012 at 1:43 am

      Ok an update—I met today with a fella from a Va non-profit organization who specializes in Social Security issues. Both he and my DRS counselor have assured me that riding a m/c does not jeopardize my status with SS. I want to ride again of course but I’m in no real hurry. I need to be stronger and sharper before I will allow myself to get back on it. But at least now I feel a bit better about it.

    • Anonymous
      March 5, 2012 at 2:34 pm

      That’s good to know WBowyer

    • GH
      March 5, 2012 at 5:27 pm

      I’ve thought about getting a motorcycle — probably a 750 — but I haven’t ridden in many years, and then on a smaller one. What are your criteria for deciding that you are ready, more specifically?

    • Anonymous
      March 5, 2012 at 7:55 pm

      Hi GH,

      Don’t know if this will help…..but here goes! I rode my brother’s cycles as a teenager and into my early 20’s. A year after I contacted GBS I started looking at bikes when I was 59. When I first started looking I was unsure of my physical abilities. I could barely swing my leg over to sit on the bike………it was probably 3 months before I bought a bike. The things I think that are important are 1. how’s your balance? 2. when you sit on the bike can you touch the ground easily? 3. why do you want to buy a bike now? In my area there are safety bike courses that you can sign up for and they supply the bike (around a 500)…..that might be a better way to find out if you really want to ride again. And at the same time you can use it as a guage to see if you can actually ride one. I bought a 1200 bike and have had no problems… about 150lbs and 5’8″. Let me know how it goes…..I’m really enjoying my bike and can’t wait for warmer weather to get on it……good luck

    • Anonymous
      March 6, 2012 at 2:56 am

      I need to be stronger in that I need to have more stamina than I do now. Riding is (or was) very relaxing for me. But at that time I was strong and had no stamina issues at all. I could ride 500 miles in a day, I was tired but I was ok. 3 hours in the saddle feels like 6 or 8 in a car. It tires you much faster–mostly due to vibration, noise and the inability to shift around like you can do in a car or truck. You are basically immobile until you stop. Relaxation will be more difficult for me at least till I have less issues with stamina and leg and foot pain. I have adequate strength, in that I can easily get it off the side or center stand and even lean it over pretty hard and get it up right again. I could not however pick it up if it were to fall over completely. You have to be able to pick it up in an emergency. My bike is near 600 lbs. Hand dexterity is important to be able to safely handle the handlebar switchgear i.e. throttle, front brake, clutch, lights and horn. You ABSOLUTELY have to be able to quickly and safely work all those controls and do it oft times simultaneously (all of ’em!) My hands aren’t there yet nor my feet. And your head has to be all there, all the time. Mine isn’t yet. Still having to take Gabapentin and that stuff puts a fog in my head. I’ve been down twice–have a 15″ titanium rod in my left leg from the last one. I really want to ride again and one day I will but I need to be 100% first. Or close enough to smell it!

    • GH
      March 6, 2012 at 4:30 am

      I remember the stamina issue from my experience long ago. What works around a small town is not so practical on even a modest road trip. The bike I want now is about 400lbs. I expect I could right a bike of that weight. The effective weighr should be about half the actual weight, is that correct? I would hope to be able to ride it up the Oregon coast from the SF Bay Area, a pretty long trip on a bike.

      I’m pretty near normal now above the knees. Just a small tremor in my hands now and then, but no dexterity issues. My leg strength is pretty good, but my knees are wobbly. It doesn’t interfere with driving a car, and I wouldn’t think it would matter on a bike. With my feet, the main issues are pain and weak dorsiflexion. The pain is there pretty much all the time; it only gets worse when I have weight on my feet for a long time, so I don’t think that would be a hinderance. It doesn’t stop me from getting around now. Dorsiflexion is used to shift gears on a bike, but I’ve been told there are heel-and-toe operated levers to work around this. There’s nothing wrong with my head at all, unless you count wanting to get on a motorcycle in the first place!

      Tom, I feel like my balance is pretty near normal. Recently, for the first time, I discovered I could jump of the floor (not very far) and come down still standing. This is a year and a half into my recovery. A year ago I was barely walking with a cane, and my balance was challenged all the time. Balancing a bike would require a refresher course, and there is one of those offered near me. I have never tried the bike I’m thinking of (MG Nevada Classic), but if I couldn’t manage to stand over it and control it, I wouldn’t consider riding it, of course. I am 6′ and 200 lbs, by the way, trying to get back below 190. Question 3: Now because I am retired and have the time, and at (almost) 65 not much more time. A life-threatening illness that forces one into early retirement can change one’s view of what things are important, as I suppose many here know.

      It is not all certain I will do this. It’s just something I’m thinking about. We’ll see. Thanks, both of you, for the tips.