Today I Jogged

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

🙂 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

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

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

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!

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!

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?

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……….

😀 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!

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

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.

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.:)

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.:)