Testimonial: Joe Beats GBS

Read about Joe, as he tells his story of how his active lifestyle help him beat Guillian Barre Syndrome and his 7 steps to a fulfilled life.

Now, two years later, I am still on the road to fuller recovery from Guillian Barre Syndrome. I get around more easily with a cane and can drive myself to shop. I cook, clean and pretty well manage to care for myself. In the words of my friends I am “highly functional.” I still have difficulty with steps, but wonderful VA therapists are working with me on that and I remain optimistic and continue to make progress. I am hoping 2010 will be the year I can resume travel (I mean like beyond 40or 50 miles one way.) There are too many people I want to see again; too many I want to hug, too many I want to thank in person. I remain very, very grateful to so many who have supported me through so much and especially to those who loved me when I was less than fully loveable. I know that I would not have made the progress that I have without the wonderful rehab team at the VA.

So having written after action reports during my military service, I am at a point where I am reflecting on what I have learned from all of this. I hope that I may have some things worth sharing with other vets who have suffered life changing events, who are going through rehabilitation or who may just wonder how other people deal with major health issues. I certainly am not the smartest guy around, but at 64 years of age I have been around long enough to make some observations. Here they are:

First, no one asks to get sick, suffer an accident or have health issues. I don’t even know with certainty what caused my GBS. That is just how it is. Life isn’t fair. Accept the fact that it isn’t fair and get over it. Most vets I have met take that attitude.

Second, be compliant. There were so many times when I lay on the exercise mat trying to move my leg and I just couldn’t do it. It was the same for my right arm. When therapists ask you to try to do something, don’t say you can’t do it. (Even if you are pretty darned sure you can’t.) Just try to do it.

Third, know that there are going to be some days that are not good. Some days you see progress and some days you won’t. Don’t dwell on what you can’t do; dwell on what you can do.

Fourth, be patient. The medical staff, nurses and aides work hard. They can’t always get to you immediately when you need or want something. They really are there for you and they do genuinely want to help. But, you are not always the patient who needs help immediately.

Fifth, retain your sense of humor. One of the greatest qualities about people who have served in the military is that they have an amazing sense of humor. Humor is one of the things that got me through Vietnam. It helped me get through GBS too.

Sixth, talk to and thank people. If you take the extra step, are courteous and maybe even learn people’s names you will be amazed at what happens. Among other things, I received zucchini bread, banana bread, pie, fresh coffee, fresh vegetables and even a boxed dinner or two or three or more. Fortunately, I was able to reciprocate every now and then when one of my sisters or friends would make a run to the West Side Market. Luckier yet that one sister lives near Dayton and has an in with Esther Price Candies. Don’t get me wrong though, you don’t need to spend money. A handwritten thank you note or a couple paragraphs in a short letter of appreciation will work wonders. Even a spoken “Thank you!” is important. And, there is a very positive side effect. If you can shift your attention to others that leaves a lot less time for you to dwell on your own limitations.

Seventh, use your alone time constructively. You are going to be alone at times and you will get sick of TV. You need something to build your inner strength or help you deal with stress. If you are religious, pray. If you are not, you can meditate. Doing both is probably best. If you need help with prayer, there are some great Chaplains around. I’m Catholic, but the Lutheran Chaplain had one of the greatest senses of humor of anybody I met at the VA. If you don’t know any meditation techniques there are plenty of people who can give them to you if you ask. I used visualization a lot. I would picture where I wanted to be or what I wanted to be doing, then I would let my mind take me there.

Eighth (and last!), take ownership of your condition and be part of your treatment. Know what drugs you need to take and why. I took a stool softener much longer than I needed to. I would have taken it even longer if I had not asked if I really needed it. (This was not at the VA.) I also went to a once a day blood thinner sooner than I might have because I asked about changing. Trust me one daily injection in the stomach area is better than three if that is an option. Along these lines remember that medicine is an inexact science. Some things work better than others and each of us responds as an individual. Do your individual part to help find what will work best for you. Be proactive.

In closing, I hope that none of you will ever have to endure GBS. I also hope that some of what I learned may be useful to you or someone else. Will leave with this final thought (wish I could remember the author), “Don’t rust out, wear out.”