Today I Jogged

    • Anonymous
      October 12, 2009 at 4:49 pm

      Hi Everyone…….After a painful six week introduction at home, I was admitted to a local hospital and diagnosed with GBS on March 28, 2009. I became paralyzed from the neck down, undergoing both plasmapheresis and IVIG treatments, over the course of 5 1/2 weeks. I spent the next 11 1/2 weeks in a rehab facility. On July 24, 2009, I came home in a wheelchair. I have since transitioned to a walker, to a cane and finally independent walking. How great it felt to walk again!

      Those of you who know firsthand about GBS, know how devastating this snydrome can be. Each of us has a deeply personal story to share with others in the hope that together it helps make things easier for us. Many days, as GBS sufferers, our victories are small and almost unmeasureable. It’s very realistic to doubt our progress at times. But it is my reassurance that with a positive attitude along with others factors such as faith, family, friends and therapists, our lives will improve. Please know that there are others who empathize with you, understand your ordeals, and that things will get better.

    • Anonymous
      October 12, 2009 at 6:43 pm

      Hello Tom and welcome. 10/13/07 was my start and this summer I ran 1 mile. My endurance is up but the bottom of my feet arent . I pick up my new orthoticvs tommorow and hoping that will help the feeling of walking on rocks.
      How far did you jog?
      Ron

    • Anonymous
      October 12, 2009 at 7:16 pm

      Hi Ron….well you can hardly call it jogging….it was off and on again between telephone poles…maybe a 1/2 mile total…..laughable to anyone who would see, but still a huge step in the right direction. Were you a long distance runner before GBS? I still have a lot of tingling in my feet. Have you a similar experience with GBS?
      Tom

    • Anonymous
      October 12, 2009 at 9:03 pm

      My experience is alot like yours in that it got up to my neck and then to the top of my head on the right side. Was at U of M for 5 weeks then rehab for a couple months. I only had ivig and was tested daily for lung test. All is well but my feet that are Getting Better Slowley. Its been 2 years tommorow. I am 55 years old. I ran a marrathon in 1982.I ran that after I broke my leg. Its almost dejavu now to run again.
      Ron

    • Anonymous
      October 13, 2009 at 8:29 am

      Hi Ron……..I always liked running the 1/2 marathon, but have never tried a full marathon…..In my mind I thought GBS was like running a marathon, constantly reminding myself that I was in the recovery phase for a long time, not to go out too fast…….I’m 58, and had started to run about 25 miles a week in Janaury, in the hopes of upping it through spring….best laid plans. I have some numbness in my feet and the dorsi/plantar flexion is not there yet. I had used orthotics years ago to correct biomechanical problems, but have been able to work out of them the last few years. Perhaps you will only need them temporarily. Good luck!

    • Anonymous
      October 13, 2009 at 8:15 pm

      Hi there, I used to be a runner in my prior life…jogging, nothing serious. I felt like I had some peripheral neuropathy problems in my feet prior to getting gbs. I’m 55. I have been told to switch to biking and swimming, to keep the nerve problems in my feet to a minimum. I still have vibrating in my feet and calves 2 years later…not really painful but very uncomfortable. So I have been sticking to walking, hoping that eventually all odd sensations will disappear (the ole complete recovery dream). Are you pain free, or do you just run through it? What have you been advised to do for exercise, and are your docs concerned that the “pounding” of the run will cause additional damage? I’d love to hear some other opinions…….Andrea

    • Anonymous
      October 13, 2009 at 9:17 pm

      Hi Andrea. My feet are only painfull on my left side(rocks in my socks). They both are a weird kinda of numb at the balls of my feet.I just picked up my orthonics today. The doc said try them out, they should give me better support and after a month he will reavaluate them and possibly put a gel silicone under the balls of my left foot built into the orthotiics. He said to only wear them an hour the first day then add an hour everyday after that. They seem to distribute my weight differentley, and feel pretty good on my right foot and alittle better on the left foot.I started running and got up to a mile when the left foot started to go down hill so I have stopped for now.I am hopping that these inserts will help my feet distribute my weight more evanley and possibly settle my left foot down.
      Ron Ps I dont go to my docs anymore from my GBS No nuro or pt guy. I sarted running because I can.I soon found out that I will pay a price in pain so I will start back up when I “can”. I may do like you said and just run with it dont know yet.

    • Anonymous
      October 14, 2009 at 3:15 pm

      Hi Andrea, nice to meet you. My neurologist doesn’t want to see me for another 5 months and didn’t give me any specific instructions for my exercise program. He did tell me that I might not be able to run again. I ended physical therapy 2 weeks ago and have been supplementing at a local fitness center. I have taken a conservative approach to running again. I believe, like you that over time I will have a full recovery. I think that you have to just test the waters. My recovery phase has been slow but steady. I was always cautioned about overdoing physically, but I can honestly say that I haven’t hit a wall that set me back. Rest is a very important ingredient to any program. As far as the running goes I am no way near the stride I once was, but over time I think it will return. We’re all running recovery marathons, not sprints. Keep a good outlook and don’t beat yourself up if it doesn’t happen as fast as you would like. Right now I feel so blessed to be walking. Have a great day………….Tom

    • Anonymous
      October 14, 2009 at 4:54 pm

      Hello Tom it sounds like you are doing very good. After just seven months you are running. There used to be a guy who was here on the forum named Gene. He would say GBS stands for G etting B etter S Lowley. He also was older than us but got healing in his feet evan after the two year mark . The nuro told me that after 2 years you might be stuck with what you got. I dont want to believe that either. Take care
      Ron

    • Anonymous
      October 14, 2009 at 5:13 pm

      That is such a great accomplishment!! Congrats!!!!!!!!!

    • Anonymous
      October 14, 2009 at 7:51 pm

      Hi….I remember in about the 4th week of my GBS a young woman of about 28 came to see me at my neurologist’s request. She had suffered with GBS, went from healthy to respirator in five days. When I met her she was walking and feeling pretty good, after 7 months. Although she had residual effects, she helped inspire me.

      When I wasn’t getting better with plasma pheresis, my neurologist was reluctant to try IVIG until he spoke with a specialist in Pittsburgh. Thankfully, he prescribed IVIG. I’m convinced that treatment made all the difference. Doctors seem to posture themselves as though not to give false hope…….I guess its the nature of the animal. But we need to remind ourselves that each day we are given the chance to get a little better than we were the day before. No matter what the statistics say, we are unique wonders trying to do our best to improve. I’m glad we are able to share our stories with each other. Take care, Tom

    • Anonymous
      October 15, 2009 at 12:11 pm

      So far with my experience and others like me in the last 2 years it seems that those who have had both PE and IVIG recover more completely. Just my observation.
      Ron

    • Anonymous
      October 16, 2009 at 10:05 am

      Tom,
      Keep running my friend, I find it to be the best therapy. I had a hard time with my knees at first and then started to build up the joints. I have had acupuncture on my lower legs to help with my dorsoflexion.

      Jaymes

    • Anonymous
      October 16, 2009 at 5:14 pm

      Hi Jaymes….thanks for the encouragement. I jogged a 1/2 mile yesterday in a blistering 10 minutes! I’m not complaining….only a couple of months ago I was wheelchair bound. Acupuncture is an alternative I may keep in mind down the road. How long have you been running? Tom

    • Anonymous
      October 16, 2009 at 5:35 pm

      Tom

      I just started running about a month ago. I started with a half mile, then pushed through the pain to 2 miles. A buddy of mine and I ran 4 miles a couple of times around 50 minutes. Now I can do about a 12 mile pace for 6 miles pretty consistent.

      Please keep pushing through, and I think a running buddy helps a lot.

      Jaymes

    • Anonymous
      October 16, 2009 at 6:00 pm

      Tom, and others. My name is Dave and I am a father or 3 (twin boys 5 and a daughter 3yrs old). I had gbs just over three years ago. I still have the intermittent fatigue and neuropathic pain in my feet among other things. I remember being so weak I couldn’t stand to take a shower when I got home from the hospital. I now am swimming 3-4 miles a week, a mile at a time. I remember thinking I could not get past 3/4 of a mile and I did and haven’t looked back! I still have weird pains in my abdomen (almost like cramping) but am thankful. Stay positive. I know I struggle at times and it is therapeutic to hear others and their stories. You will get there!

    • Anonymous
      October 16, 2009 at 8:57 pm

      Hi Ron, Jaymes, and Dave

      Too bad we don’t live near each other, we could start our own running/swimming GBS club. Thanks for sharing all your stories…a little encouragement goes a long way. Have a great weekend………Tom

    • Anonymous
      October 17, 2009 at 9:43 am

      Yes, I agree that a GBS run club would be great. No one knows our pain and other issues like a GBS survivor. ๐Ÿ˜€

      Jaymes

    • Anonymous
      October 23, 2009 at 1:31 pm

      Hi Ron, James, Dave and joggers. I confess, I’m a weenie. Fearful of pain and relapse. I think I am further out from gbs than all of you. You motivated me with your tales, so… yesterday, I jogged a quarter of a mile. My legs didn’t fall off…quite amazing. Actually, it wasn’t nearly as bad as I anticipated, although my legs felt very wooden. So that was the good news. The bad is when I was trying to sleep, my left leg went crazy with spasms, vibrations so I didn’t get a wink. At this point my recovery seems pretty good everywhere except my left leg, one shoulder and some spots on my face. But sleepless nights make me crazy, which is why I haven’t pushed the exercise so far. This is a typical reaction for me when I overdo it. Any suggestions? Do you experience this bedtime reaction, too? Andrea

    • Anonymous
      October 23, 2009 at 3:36 pm

      Hi Andrea,

      Having read some of your other messages, I love your attitude about staying positive and not willing to accept finalities with GBS. I have jogged a 1/2 mile 3 times in this week with my dog Cody. I shouldn’t wear a watch when I run but old habits die hard. Yesterday I ran a GBS PR in a blistering 8:56…..you have to know that as a fellow GBS survivor, I’m not complaining. Residual effects are minimal, maybe a little more foot tingling, but nothing of what you are experiencing. Maybe I’m naive but I’m not worried about having a relapse. Just have to know when I overdo, I need to provide ample recovery time. Sometimes exercise time of day makes subtle differences with how I sleep at night. (Probably a correlation with how active I have been that day too). Since I’ve been home, I’ve used an over the counter sleep aid like Advil Pm to help. Are you on any current meds? What other exercise regimens have you tried? We all know how patient we need to be……..but you have taken a big step in wanting to get back to normalcy, and I appauld you for that. Take heart in knowing how far you’ve come. What is that adage?…” A journey of a thousand miles begins with but a single step”. Keep us updated on how you’re doing….you are not a weenie!!! Tom

    • Anonymous
      October 26, 2009 at 12:03 am

      Tom, I think it is important that you mentioned the former gbs patient visited you early in your experience with gbs. One of my recovery team also located and arranged for a former patient to visit me. It helped immensely. There I was having doubts about ever standing again and was able to talk with someone who was getting around normally.

      I am two years after the onset. I’m too old to do much running but after about a year of gradual recovery I now walk at a 20 minute per mile clip over 2 miles each day. I have no ill effects from the expercise and have no concern about relapse. My feet and lower legs numbness are the ill effects I still suffer but I try to mentally isolate the discomfort while walking and it seems to work for me. I had some wonderful help along the way and I decided that I was not going to let this thing keep me down.

    • Anonymous
      October 26, 2009 at 11:22 am

      Hi Hutsky….glad to hear that you are doing so well…..I think it is so important to draw encouragement from any source to combat this syndrome. It’s great that you are remaining positive by walking 2 miles a day. My goal is to walk 3 miles at the Turkey Trot race that our local runners club sponsors every Thanksgiving. (I know it would be icing on the cake to complete that distance). Keep up the good work!………….Tom

    • Anonymous
      October 26, 2009 at 1:12 pm

      Hi Everyone…I hope your week is going well…….I thought I would give a little perspective to those of you who may be having a rough day. About 6 years ago my daughter and I started volunteering for a non-profit organization called TREC. In a nutshell…it is an organization that uses trained horses to provide safe equine therapy to individuals with special abilities. There is a whole range of participants, from autistic kids to adults in group homes. Some are wheelchair bound.
      Needless to say, when I contacted GBS, I was unable to volunteer……until over the last month, when I was able to sidewalk and lead a horse again. What a minor miracle that was for me. But the even greater miracle is the one I experience when these individuals are atop a horse. The transformation that these riders undergo is remarkable…..frowns turn quickly to smiles and quietness is often replaced with happy chatter. After a session is completed I am a better person for having been a part of this process. It helps me to realize that my problems are small compared to the ones they are experiencing.
      As big as our problems are there is often someone else who is suffering more. I hope that each of you has something to be thankful about. Be positive and find something good in this day! Tom

    • Anonymous
      October 26, 2009 at 3:03 pm

      Tom,
      I used to do volunteer work for Amy Community Services and met with many sad situations.
      Volunteering is rewarding in many ways knowing that we have helped those less fortunate and in worse shape than ourselves.
      Knowing there is always someone in worse shape than myself helped me work toward recovery since getting GBS.
      Those that have made improvement and post their stories as you have done helps inspire me to know more improvement is possible.
      Happy for you with the improvements you have made and being able to do your volunteering again.
      Shirley

    • Anonymous
      October 28, 2009 at 1:38 pm

      Hi Shirley………thank you for your kind words……..as we do our best to recover, it is important to remember the gift of each day and how far we may have already come. And the promise that tomorrow may hold even better things for us. Tom

    • Anonymous
      November 4, 2009 at 8:06 pm

      Hi………… Wanted to share some good news. In late September after working very hard I was given permission to go back to my previous job, only to be laid off. Although it was disappointing, I quickly rationalized that losing my job was nothing compared to what I went through with GBS. I continued to remain upbeat and today I received a call to come back to work. I feel so fortunate and am happy to share this moment with others. Even if it is only a temporary situation, I know that I will have connected another dot in my quest for recovery. My hope is that we all continue to strive to get better and that good things will continue to happen. Thanks…….tom

    • Anonymous
      November 5, 2009 at 4:14 pm

      Tom,

      I am glad to hear you are back to work! Are you still running? I just ran 8 miles Monday of this week in 1:43:16. That is a long time but great for me as I try to pound myself back into shape.

      How are you doing?

      Jaymes

    • Anonymous
      November 5, 2009 at 5:26 pm

      Hi Jaymes……..8 miles is great!!! I can only dream about running that far…..actually I am “jogging” (how I dislike that word) 1/2 mile 3 times a week. I feel pretty good about that……..it is nice to see how well you are progressing. I wish you continued success. As far as work is concerned….management has reduced the workforce to the point that I’ll have to work 6 days…..I’m not complaining, but it will be an adjustment to stand all day. I still have numbness in my feet which I don’t like, but I realize that I have made big strides and it will take more time…I continue to be blessed………….happy running!!! Keep me posted on your progress…..Tom

    • Anonymous
      November 7, 2009 at 9:49 am

      Hello all,
      I am thrilled to hear of your running/jogging adventures. I gave up running years ago due to family arthritis history and problems with my knees, but I replaced running with walking. When I can walk from one end of my house to the other, while leaving my cane behind, I feel like I have accomplished so much. We each have our threshholds that make what we do so successful for us. If you jog even an 1/4 of a mile you are trucking in my book. Keep up the good work. To address one issue that has been floating around, I find that if I do my exercise daily, leg lifts, kick-outs with weights, wall slides, etc. I have much less restlessness in my legs at night. I was able to go back to work in August and I have been recently traveling again to NYC. It is really hard, but I push myself to get to the next level. Similarly, I make sure I rest appropriately and take precautions by scheduling flights at reasonable times, arriving the day before so I get a good nights sleep, etc. I didn’t think I would get back to work, let alone travel again some day. Now I hope for the strength to make it to my son’s graduation in May across the US. Nice to “meet” you all.
      Diane

    • Anonymous
      November 7, 2009 at 6:57 pm

      Hi Diane……..your words have a lot of meaning to all of us…….when you talked about having a good day… when you could walk unassisted from one end of the house to the other, it reminded me of one of my earliest therapies. I had so many doubts like many of you…..none greater than knowing if I would be able to walk again…..and so, here I was in therapy wanting to walk so badly, using a standing moving frame, and being unable to do much on my own. But this day was different because with the help of 4 therapists I was able to pick up my legs and move forward……never mind that it was just a few squares on the floor….it made a difference! It was a new beginning…..a threshold that you spoke about. I don’t know when my thresholds will stop, but it won’t be for lack of trying. I congratulate you on your attitude and how well you are doing. By the sounds of it Diane, you’ll be attending your son’s graduation in May……..Best of luck…………Tom

    • Anonymous
      November 11, 2009 at 12:53 pm

      Hi All, after my inaugural jog three weeks ago, I experienced 10 minutes of exhilaration, 6 hours of re-found “feeling normal” and three weeks of aches and pains………ha……how GBS! I have been happily buried in normal parenting activities, including long weekend drives to my kids’ colleges. That would have been impossible for me a year ago. However, I’ve decided to put my jogging career on hold for awhile. I have not had much luck with over the counter pain meds. I see my doc next week and may ask about a cortisone shot in my, hum, backside. Have any of you tried this? My residuals are pretty patchy at this point and I’m thinking a well placed steroid shot might just do the trick (you can tell I have no medical background, right?!). I would like to step up my physical activity, but I’m just not willing to give up a decent night’s sleep. Also, my doc is wondering if my left leg is really GBS or pinched nerve from arthritis in my lower spine…I don’t know if that makes a difference or not in terms of pain control. Tom……..congratulations on your job. Hired in the recession…fantastic news! Diane, sounds like your recovery is going well. Good luck on your plans for the May graduation. I stayed in bed for three days to make sure I was in good enough shape to go to my son’s graduation…….and it was only a 20 minute car ride from our house! But 2 years later it is still one of those moments of my life that I am most grateful for. I don’t know if I could have coped gracefully with missing that special event. Keep moving, All….I love all the motivational stories………Andrea ๐Ÿ˜€

    • Anonymous
      November 11, 2009 at 1:28 pm

      Andrea,

      Keep pressing in the jogging! No matter the distance or time, keep doing it to bring back muscle memory. GBS will not win the battle in your life!

      Jaymes

    • Anonymous
      November 11, 2009 at 5:12 pm

      Andrea,
      I know steroids are not for those of us with GBS but don’t know how one shot will affect it. Others may be able to answer that for you.
      Good luck
      Shirley

    • Anonymous
      November 11, 2009 at 8:47 pm

      Eeeks…..yeh, I remember now that we are supposed to avoid steroids. I guess I won’t be asking the doc for that one! Thanks for reminding me. I’ve also considered acupuncture, but was worried about the needles piercing my skin. Amazing how much I seem to over analyze the options! Andrea:)

    • Anonymous
      November 11, 2009 at 11:05 pm

      Not that anyone wants to take steroids, but why in particular are we suppose to avoid them? Sorry, haven’t heard that before…

    • Anonymous
      November 13, 2009 at 5:08 pm

      Hi everyone………how has your week gone? The weather has been beautiful in northwest PA this week……Since I don’t know about steroids and GBS, I’m going to comment on exercise in general. I think almost any regular exercise program is worth doing. There are a bunch of us who would love to return to our old running regimen….but we each need to take our own situation under scrutiny to see what works best for us today. Some of us have the ability to almost will ourselves back to our former activity, while others have to become more creative. Andrea, maybe you should try something less “punishing” than running, like elliptical or stationary bike training. It may help you to gradually re-orient your body to the rigors of aerobic exercise. I think it’s important to keep our options open and not beat ourselves up mentally (and physically). Perhaps we will find new things that we will like as much as the old. Also, about exercise and sleep habits…..I have always slept better when exercise was done at least 3-4 hours before bedtime. Wish everyone the best in your exercise program……stay positive….and don’t be afraid to reward yourself once in a while because you’re doing so well! Tom

    • Anonymous
      November 13, 2009 at 7:07 pm

      Julie,
      Steroids are counterproductive with GBS. Instead of helping with GBS they can produce problems.
      Hope this helps.
      Shirley

    • Anonymous
      November 23, 2009 at 5:14 pm

      Hi everyone…..I’ll surely be giving thanks this year…..wishing everyone a happy Thanksgiving…..Tom

    • Anonymous
      December 4, 2009 at 7:10 pm

      Hi…how is life treating everyone today? Well, first the bad news…..Got laid off at work due to insufficient workload………was back a little over a month and it was good to know that I could still do the job, as it is a fairly physical position. So while nobody can get excited about losing their job, I am happy that I have progressed so well.

      Now the good news…..I took the plunge yesterday and ran a mile with our dog Cody. A glorious 12:44 mile….yea……..connect another dot in my road to recovery map. How is everyone else doing in their exercise programs? I wish you success……..have a great weekend………tom

    • Anonymous
      December 7, 2009 at 11:35 pm

      Hi Tom:So sorry to hear about your job. There is very little compassion in the world out there these days. With your attitude though I think you will find something better soon and I hope this turns out to be the best thing that could happen leading you to a better job or happier life.
      I cannot exercise much due to pain and now also to a second autoimmune disease that just struck me for the third time in 9 months, twices in the last two months. At least I didn’t have to go to the hospital this time and that is an improvement, though I must say I could do with a pain vacation. I count my good days as those in which I feel the joy of life and can do my job, be with my wife and cat, and feel my inner truth. If I can get some swimming in that week it would be over the top, but that doesn’t happen all that much. Maybe next week. Good luck in all you do. Jeff

    • Anonymous
      December 8, 2009 at 11:21 am

      Hi Jeff………thank you for your kind words…..I am confident that the job market will improve, whether I return to my former job, or seek other employment opportunities, I feel good that it will work out. (And yes, it seems at least the corporate world has changed and in many ways has no conscience).

      I’m sorry to hear about your struggles with pain. I had severe back pain about 6 weeks before I was diagnosed with GBS, but I have been extremely fortunate that it relented after being on medication in the hospital. Most pain that I had subsequent to that was from coping with the emotional/psychological pain that comes with dealing with such a devastating illness.

      I know that each of us who suffer from this illness has a unique story to tell. My hope is that you will be able to persevere through your current challenges and be able to do more of the things you like. Take heart that there are many who care what is happening and wish you continued progress to improve your quality of life. Sometimes it is the simpliest things in life that are the most rewarding…..stay positive and good things will happen…..Tom

    • Anonymous
      December 11, 2009 at 5:15 pm

      Hi guys, wow, the runners carry on! It was fun to catch up on everyone’s news. I have not run again, decided I needed my sleep. Happily, the neuropathy continues it’s departure. In the last month, my horrible left gluteus is almost back to normal! I can not tell you what a relief this has been. I can almost bounce up and down stairs. My feet are awful, and my left leg is calf is still sore and tired, but this change has been wonderful. My husband and I are still unemployed, but have decided to give up worrying and just keep withdrawing our savings. Something will work out, right? Went to see a new doctor after screening many (mine retired). Just got some tests back, which were irrelevant and not what I requested. Apparently, WE were not communicating. On my insurance plan I only get one doctor’s appointment a year before I pay for everything. I was not pleased, and this doctor has decided I didn’t have GBS afterall. Well, guess what…it’s too late for a lumbar puncture now! I was more discouraged than I should have been. I feel like I must be speaking Portugese when I talk to these doctors. Now this one wants me to see someone who specializes in RA. And also thinks I should wait until my next “attack” and get all the tests rerun, so my true diagnosis is known. The thing is, I’m not really planning on another “flare”. Eeeeks, I love having mystery disease of the month. I can not understand how some doctors can discount everything one says to them. Does Ohio have the worst doctors in the country? Aside from my Raynaud’s (one thing everyone agrees with, but me), I am still improving, but I’m about to stop giving medical histories to my docs. I feel for anyone who struggles with autoimmune…such a strange condition. Jeff, hope you feel better. Sorry for my complaining, guys, it was a bit off topic. I’ll be doing yoga this weekend (that was my attempt to get back ON topic) — ๐Ÿ˜€ Andrea

    • Anonymous
      December 11, 2009 at 9:19 pm

      Yoga Andrea? I pictured you as more of a Pilates type of person! (Just kidding….a poor attempt at humor). You should have received better treatment from your new doctor. It is unfortunate for you that he was not listening to your concerns. It must be doubly frustrating especially with your insurance restrictions. Uggh!! I empathize with both of you about the unemployment too……

      And yes, despite what many may consider setbacks, I believe that things will work out for you……..for the best. It is things like hope and faith that give us the courage to go another day without knowing what it brings. I think you’re up to the task, no matter what confronts you.

      After all you’re the one who is almost bounding up the steps…….when people ask me how I’m doing I tell them that I feel pretty good……….except that I’m not leaping over the tall buildings like I used to be able to do. Now can anybody help me find my cape??? take care………tom

    • Anonymous
      January 12, 2010 at 10:49 am

      ๐Ÿ™‚ Hi……….long time no hear…….how is everyone doing? Many of you no doubt are trying to keep up with the snowshoveling……..I don’t particularly like to drive in snow, but it sure is beautiful as I look at it out the window. I have not been called back to work yet but on the plus side, the extra time has given me opportunity to do things with our daughter who is on break from college.

      GBS still manifests itself with numbness and tingling in my feet, but I have learned to deal with it. I have continued with a regular exercise program and have recently begun to run for 30 minutes. I’m the fastest 12 minute miler on the block! (Okay, so I’m the only runner on the block). I feel so fortunate to have recovered so well, so fast, considering how terrible this virus can be.

      I am sincerely hoping that all of you have continued to improve and are remaining strong in your comittment to becoming better. I think of each of your stories from time to time and wish you continued improvement as we begin 2010. May good things continue to happen in your lives. Take care….tom

    • Anonymous
      January 13, 2010 at 4:39 pm

      Hi Tom –
      Glad to read something regarding exercise with GBS. I was diagnosed Sept. 15, 2009. Plasmapharesis 5 times over 7 days I believe stopped the progression. 10 days in ICU and 10 days in rehab, I’m doing much better. I have more good days than bad;-) I am anxious to start back on my treadmill, but was told by a neurologist that over doing it would cause permanent nerve damage. Scary!!!

      Any additional ideas or feedback on the topic would be greatly appreciated.

      Thanks in advance,
      mj909

    • Anonymous
      January 13, 2010 at 7:05 pm

      Hi MJ909!

      Thanks for asking about exercise….I’ll try to give my perspective on exercise and then you can draw your own conclusions. I had both plasmapheresis and IVIG treatments. I was paralyzed from the neck down. After 5 1/2 weeks in the hospital, I spent 11 1/2 weeks at a re-hab facility. During my extended re-hab phase I had two, one and a half hour sessions of physical/occupational therapy five days a week. I was cautioned at each level not to overdue. In the case of GBS it is better to err on the side of less is more. Having said that, I will tell you that I worked very hard to get better. It was a definite help that I was had been a long distance runner before I contacted GBS. It gave me the patience I needed for the long haul. It took 5 months for me to walk independently, 6 1/2 months before I jogged between telephone poles for the first time. As you read I can now run for over 30 minutes, and I feel blessed.:) After I came home in late July, I continued with outpatient therapy, and in August opted to join a local fitness center. I at first used the center for more upper body strength and core exercises but have added some of the cardio machines. I have done most of my running outside as I find the treadmills a little harder to use…..I guess I don’t completely trust my balance on a moving surface and my pride doesn’t allow me the luxury on hanging on to handrails. But I encourage you wholeheartly to begin your way back to normalcy. A more conservative approach would begin with walking. I have also found that using a stepper or elliptical trainer type machine is much easier on the body as it is non weightbearing. Also, when I first came home I purchased an exercise ball at Wal-Mart and some arm/leg weights. I especially liked using the ball for strengthening my pelvic muscles. You’ll have to experiment and discover what works for you. Always allow yourself the opportunity for rest and don’t beat yourself up if you’re having a bad hair day!

      My hope is that you will be able to soon do the things that you could before GBS. I found it a lot easier to judge my progress over a week or two period rather than day to day. Try to find a positive in each day and build on it. I wish you much success. Please keep me posted on your results. Take care Tom

    • Anonymous
      January 13, 2010 at 7:41 pm

      [QUOTE=Tom Fetterman]Hi Everyone…….After a painful six week introduction at home, I was admitted to a local hospital and diagnosed with GBS on March 28, 2009. I became paralyzed from the neck down, undergoing both plasmapheresis and IVIG treatments, over the course of 5 1/2 weeks. I spent the next 11 1/2 weeks in a rehab facility. On July 24, 2009, I came home in a wheelchair. I have since transitioned to a walker, to a cane and finally independent walking. How great it felt to walk again!

      Those of you who know firsthand about GBS, know how devastating this snydrome can be. Each of us has a deeply personal story to share with others in the hope that together it helps make things easier for us. Many days, as GBS sufferers, our victories are small and almost unmeasureable. It’s very realistic to doubt our progress at times. But it is my reassurance that with a positive attitude along with others factors such as faith, family, friends and therapists, our lives will improve. Please know that there are others who empathize with you, understand your ordeals, and that things will get better.[/QUOTE]

      How exciting, Congratulations!!! ๐Ÿ™‚ I bet you will never forget the joy of that moment. Keep your chin up!

    • Anonymous
      January 14, 2010 at 1:25 pm

      Thanks J. Dennison,

      You’re right, I won’t forget the joy of being able to run again……it ranks up with some of my other “firsts”. Being able to wiggle my toes, roll from side to side in the bed by myself, bending my knees, writing my name again, going to the bathroom unassisted, opening a pop can, and walking independently. All “little” things in life that I will never take for granted again. I am indeed very blessed.

      I wish I had a magic wand to make everyone’s pain disappear. But in lieu of that I offer empathy, encouragement, and honest sincerity that each of you can realize the gift of this day and show improvement. And J.D., I hope this day finds you well. Take care……..tom

    • Anonymous
      March 12, 2010 at 9:00 pm

      Hi GBS folks…we only have 3 foot snow piles. Most of the white stuff is gone. I have not jogged again. The back was just too painful. I did shovel late Jan. and ended up, again, with horrible back pain and vibrations, etc. Meanwhile, my dad passed away second week in Jan. Really set me back, although he was 85 and had great, long life. Saw doc yesterday. We agreed that GBS residuals have receded to fingers and toes. Still suffering with left glute. However, doc thinks that is pinched nerve after I had a bad fall 6 months before GBS. (I was micro adjusting a wind chime…too anal) Doc thinks I have celiac which contributed to GBS. After a year wheat-free, you should see my muscles…hey, I might make it to 60! No more jogging for me yet, but I am stepping up the yoga! Lower back still gets me from time to time. Any suggestions? It’s spring…let’s get moving! ๐Ÿ˜€ ๐Ÿ˜‰ ๐Ÿ˜€ Best to all…A.

    • Anonymous
      March 20, 2010 at 2:44 pm

      Hi…….How is everyone doing today? I’m almost 1 year into my GBS……why not celebrate that with some good news. Saw my neuro on Monday and he expects that in the next 6-12 months I will be fully recovered. If I had to guess, I’d say that physically I’m about 85-90% of my pre-GBS fitness level. Still have that annoying tingling and numbness in my feet, but it is a small price to pay considering how much I’ve progressed.

      On a secondary note…..I’m back to work for a second time (2 months now), but each time I go back, I give up the running. I don’t want to push my luck, as my job requires a lot of standing and is fairly arduous. I think I can wait the 6-12 months, to complete the healing process. I continue to go regularly to a fitness center, lifting and doing the ellipitical trainer machine. It’s all good.

      I hope that all of you are improving and keeping a positive attitude about your recovery. Thanks for letting me share my thoughts with you. Have a great day!

    • Anonymous
      March 20, 2010 at 3:35 pm

      Tom,

      That is good news.
      Your doing great. Keep it up.

      Thanks for the update.
      Good luck
      Shirley

    • Anonymous
      March 22, 2010 at 1:23 pm

      “Being able to wiggle my toes, roll from side to side in the bed by myself, bending my knees, writing my name again, going to the bathroom unassisted, opening a pop can, and walking independently. All “little” things in life that I will never take for granted again. I am indeed very blessed.”

      Your story – your posts – your thoughts are such an inspiration. Good luck on returning to work. My school district has approved a LOA until the end of this school year, so I am expected to be back in my classroom when we start back in Aug. I hope to be able to walk unassisted by then. I celebrated graduation from wheelchair to walker last week, but only around the house. Outside it is still the chair. Baby steps, baby steps.

      I find your advice “Measure your success by weeks, not days” to be so valid. Thank you for your insight.

    • Anonymous
      March 22, 2010 at 7:18 pm

      Hi Cathie………….glad to hear that you were granted a leave of absence from teaching…..there are enough pressures on you right now with GBS recovery, let alone job worries. It’s also nice to learn of your progress using the walker. Keep up the good work!!! The thing I realized about GBS and from reading other people’s stories is that each recovery is unique. It would be great if it were like having a cast on our arm and knowing that in about 4-6 weeks the cast would come off and with a little time we’d be good as new. The scary part about GBS for me was not knowing when I would start to get better. It does come in baby steps for most, it did for me. This virus has taught me patience that I didn’t think I had……I guess it humbled me in many ways…..but I know in the end I will be a better person. Treasure and remember each small victory that you realize through this recovery process. Don’t be too hard on yourself, remain upbeat……there are intrinsic rewards that you can bring to yourself every day if you set realistic goals. Smile…………….for the gift of this day!

    • Anonymous
      March 25, 2010 at 10:17 am

      CONGRATULATIONS!!!!! It is such a great feeling. I was scared to death when my Physical Therapist told me I was going to run! Keep up the great work and have fun! Life is a journey and if you can’t have fun what point is there?

    • Anonymous
      March 25, 2010 at 10:25 am

      CONGRATULATIONS!!!!! It is such a great feeling. I was scared to death when my Physical Therapist told me I was going to run! Keep up the great work and have fun! Life is a journey and if you can’t have fun what point is there?

    • Anonymous
      May 26, 2010 at 5:23 pm

      It’s not easy having your life turned upside down. Not knowing how things will turn out can be a frightening thing. Each part of this GBS journey has presented some tough challenges. Some days were filled with little hope.

      A phone call yesterday reminded me that even during the worst of my days, small interventions kept me going to the hope of a better day. When I first was receiving therapy in the hospital, the PT’s found out that I was a runner….its seems that there was a PT there that said he could “will” a 7 minute mile….mind you, although he was in good shape, wasn’t even running. During this ongoing stage of physical therapy, I was getting worse and feeling pretty low. Needless to say this whole running thing took on a life of its own and provided me with some amusement to help with the bad times I was personally having. Well, push came to shove and a date was set that the PT would run his mile. It happened to be the day before I was to be discharged to the rehab facility. I arranged for my daughter to bring in an old running medal I had at home and gave it to my PTA, who would pin it on the PT after the mile run was over. The day I was to be discharged, the PTs all came up to my room and played a video of the entire event……it was so nice of them. (And no, he didn’t get his 7 minute mile, but did surprisingly well….youth has its advantages). The phone call last night was to invite me to run a mile tomorrow…..a sort of second annual “will the mile” run. There will be several running this year……the winner (we’re all winners) will receive the “Tom Fetterman” award……how cool is that???? Last week I laced up my shoes and started running again, so I will be participating, albeit in the slow group.

      In the scheme of life, these words may not carry much meaning to the average person. But to me, as I look back on the last year, I begin to realize how fortunate I have been. I am wishing to others that are recovering from GBS that you find encouragement and the willingness to remain positive in your recovery. Have a beautiful day……

      As for me…..tomorrow I run…..think I can “will” a 10 minute mile?

    • Anonymous
      May 27, 2010 at 1:04 am

      Go, Tom – – – go! I am so pleased that you are going to do this. I can’t even imagine walking 1/4 mile, but that day will come, with God’s grace.

      You are an inspiration, and I hope that others in our forum family get as much from your postings as I do. When you lace up your shoes to tackle that mile you will have us all with you. Knowing that one of us can even have courage to try gives me courage to keep moving one foot in front of the other. Bumpy though it may be – one foot in front of the other, and gratefullness that I can do that.

      Run and smile!:)

    • Anonymous
      July 16, 2010 at 10:35 pm

      Hi everyone…….may good things be happening in your lives! I joked to someone recently that this is my year of “living dangerously”. They corrected me to say…”no, this is your year of living”. They knew that last July I was in a wheelchair and didn’t know if I would walk again. Thankfully I have recovered to about 95%, with the exception of tingly/numb feelings in my feet. (A small price to pay).

      Two weeks ago I did something a bit out of character for me….I bought a Harley Davidson motorcycle………today I rode the Harley, along with several hundred other bikers around the Presque Isle peninsula in Erie, PA., as a part of Erie’s Roar on the Shore biking event. Talk about surreal experiences…….I couldn’t help but compare the despair of a year ago to the beauty and success of this day.

      I believe it’s very important to not give up hope of becoming better. During difficult times our human nature often wants us to give up. Each of you has your own deeply personal struggle as you recover from GBS. Do your best to remain optimistic and focus on the long haul, not so much the short term. It is my continued wish that in time good things will happen……..who knows…..maybe you’ll be riding a Harley soon????? Take care……….

    • Anonymous
      July 19, 2010 at 2:19 pm

      Tom,
      So glad to hear of your improvement. It’s fun to feel like a kid again, but it’s a tough way to get there. Keep up the great work.

      Pat G

    • Anonymous
      July 19, 2010 at 2:22 pm

      Cathy, glad to hear you are seeing some improvement. Sorry about the post to Tom. I misread the post. Hope the improvements continue and you are getting better. God Bless.\
      Pat G

    • July 19, 2010 at 2:35 pm

      kEEP ROCKING!

    • Anonymous
      July 19, 2010 at 3:57 pm

      ๐Ÿ˜€ NGG….Thanks for the encouragement….Tom Petty is a pretty good guitarist….I really like the chords in “You Got Lucky”…here’s to hoping that you’ll soon be playing again….it does take time, but when you do recover, you won’t be the same guitarist you were….you’ll be better!

    • July 19, 2010 at 8:13 pm

      thank you, Tom……i love those positive comments

    • Anonymous
      September 17, 2010 at 9:14 pm

      Tom, you are always a voice of encouragement for the rest of us. Noticed you haven’t posted for 2 months. Hope all is bright for you. What’s up??

    • Anonymous
      September 3, 2011 at 10:41 am

      Today I could hear and feel the sounds of nature all around me……the noise of my running shoes as they alternately pounded the pavement, the chirp of birds as they flitted from tree to tree, the wind blowing through the cornfield as I run by. All things I took for granted before GBS……..

      It’s been over 2 years in the making….I can’t say for sure how many tries…4-5 maybe………when the GBS rubberband pulled me back to square one. But this time has been different. I’m going to make it this time! I remember the dark days when I couldn’t move, wondering what would happen. I did my bargaining and thought if only I could walk again…….

      I don’t have the wisdom to know why some have better recoveries than others..I don’t deserve recovery any more than you..but I think that’s it’s about being the best we can be this day. Be positive and don’t give up hope that good things will continue to happen to you.:D

    • Anonymous
      September 3, 2011 at 11:38 am

      Thanks for your post, Tom.
      I’m still running vicariously through other forum members. :p
      Although I’m not experiencing the pounding of the pavement, I can still enjoy everything else connected to a nice walk. Lately, I’ve decided to retrain myself to walk without a walker outdoors for short distances. This is because my shoulders and arms are getting very weak and sore from the lack of swinging and natural movement, due to using my walker for the past few years. However, I weave and wobble at times, and I get stared at.
      So, I’ll just set my walker on the lawn in front of my place, and walk up and down my block, so everybody knows I’m exercising, not inebriated.
      As a police officer with GBS, you now must have a whole new understanding of the disabled walker who looks like a drunken sailor. ๐Ÿ˜‰

      Got hand-cramps last night, so spent some time just stretching my hands and fingers to open them up well again (my latest challenge is several months of rigor in most of my fingers). And I’m actually seeing some improvement because of the range of motion stretches I’ve been using for the past 2 weeks. Not only is my hand & finger stretch widening and straightening, my overall hand mobility & strength is slowly improving, and the pain is less. I actually felt quite comfortable after those stretches got the pain under control. I now know what to do with a lot of this pain, and I thank God. I remember a while ago crying out to God about the pain, and feeling so helpless and overwhelmed by it.
      The answer I got was: “Stretch out your hand”. Etc.
      The rest is up to me.

    • Anonymous
      September 4, 2011 at 6:51 pm

      Hi D.U.

      I appreciate your humor and your resolve. It’s easy to want to blame someone or something and give up on ourselves. (None of us deserved to suffer pain, discomfort, anguish, and at times resentment that GBS has brought into our lives). It is important to not give in to those voices, and to strive to live as productive a life as we can. Your story helps to give us hope of continuing improvement.

      My goal is a complete recovery…….that wasn’t the goal that I started with 2 1/2 years ago though. Shoot, I couldn’t even roll over in bed, much less walk. (I realized early on that this would be no sprint but rather a marathon…..something I had never run before). Anyone who has been in this GBS recovery race for a while knows the patience and sacrifice that it takes. And yes, sometimes you do go backwards. It’s okay to take a break, but don’t give up! Wishing you all the best.

    • Anonymous
      September 8, 2011 at 7:02 pm

      Hi GH-CIDP,

      To be honest, I don’t recall having wobbly knees…..I definitely had balance issues associated with the loss of core muscles due to GBS. When I was first learning to walk again, I would load up a wheelbarrow of wood (we heat by wood) and cart it from the driveway to the woodpile to stack. It helped a lot to strengthen my core muscles……but I have to tell you I probably looked like a drunken sailor at first. Balance, so that you didn’t worry about falling, did not happen overnight. My main issues in regards to running again are the numbness and tingling in my feet. I had considerable pain in my one foot, a feeling like you get when you hit your crazy bone accidentally, only this was on each toe-off. Until this last time, I had tried 4-5 times to restart my running program, only to have to stop again for fear on doing permanent damage. Use caution in any thing that you do…..when I couldn’t run, I did other things like the elliptical trainer and lifting weights….it’s important to always allow for rest. I think with a realistic outlook and good attitude you will still show continued improvement. Let me know how it goes.:)

    • Anonymous
      September 10, 2011 at 8:23 am

      Hello,
      I am into year 2 1/2 with my GBS recovery. I am still having issues with my feet. Just like you described the pain in the toes. I have found that is what I get when I have tried to run but I also get it when I am on my feet to long or just doing house work. I take pain medicine to help but wondering if there is other things out there to help. I am also dealing with a lot of restless leg syndrom at night to the point I can’t sleep. Any help would be greatly appreciated.

    • Anonymous
      September 10, 2011 at 12:17 pm

      Hi Lgooseman…..how are things in Auburn?

      It seems that we have had a similar pathway and timeframe with GBS…..I went back and read some of your previous posts and both of us had severe back pain before diagnosis. And today you have mentioned that you experience the toe pain/discomfort that I still fight with (but that is getting better).

      Each of us is unique, so what I might suggest may or may not work for you. I have taken the Thomas Edison approach to finding relief to my problems…..try different approachs until you find something that helps, think of them as trials not failures, if they don’t work. And by all means do not beat yourself up!

      About medicines….I have been fortunate that I haven’t been on any prescribed medicines. As regards RLS…..for my leg tingliness/numbness I take an occasional Aleve before bed time. I used to get leg cramps but that has subsided with time. When I first roll out of bed, I feel a little bit like a Mary Shelley creation, as the numbness does affect how I walk a bit. Once I have shoes on it’s much better.

      As regards running specifically, I made one change which has allowed me to run for 2 solid months….today I started my 9th consecutive week of running, a post GBS record. The difference was changing into a new pair of less flexible running shoes. I went to a local running store and tried on 7-8 pairs of shoes until I found a pair that fit well. I think, for me, having a less flexible shoe has put less strain on my toes and made running much easier. I might suggest that if your have the money, visit a podiatrist who can fit you into a pair of full length orthotics. I used orthotics years ago for pronation problems and they helped a lot…….I gradually worked out of them b/c the quality of shoes has improved so much. In additon, it was two toes on my one foot that bothered me the most….and I started to tape them together before each run and that has helped. I am running in a Nike Structure Triax shoe. As a women, your needs may vary from shoe model to model……the Nikes might work for you…….Saucony has always been touted as a good women’s shoe…..maybe the ProGrid series would help….you’ll just have to experiment. There are plenty of shoe reviews on the net.

      Whatever you decide, be conservative……maybe walking first or running every other day…….be a good listener, if the body protests, give it a rest….but don’t give up! Think how far you’ve already come! I get excited about the running thing, can you tell? I hope that you will soon be able to run again on a consistant basis. Have a great weekend.:)