What new things can I do?

staircase photo from loghome.com, NOT my staircase, but isn't it a beautiful entry?!

Every once in awhile I ask myself what new things I can do since Guillain-Barre. Let's make my list from the past few months:

• Owen says I am conscious more of the time! So true.
  
• I can do dishes (stand at the sink, putter around the kitchen).
  
• I can go up and down the stairs multiple times a day--it's like getting in a workout, not killing my energy for the day.
  
• I can drive just fine. I still like using cruise control since my gas pedal leg is the weaker one, but I can totally do it.
  
• I can jog. Legs still stiff-ish and leaden from the knees down, but if I'm well rested and keep my head, I can run a little bit a couple of times a week, albeit slowly!
• I can go to work. Really...I can do all I need to as an Emergency Room RN. IV's, no problem (well, no more than the usual difficulties!), walking all shift--even the occasional 12-hour one-okay. I still only work maybe part-time hours, but this is just fine for me and my family.
  

So what do you think of that? For me, this is progress, and I like that. I hope other patients experience similar improvement over time.

Speaking of other patients...I have found another blog I like at guillain-barresyndrome.blogspot.com. It is informative, and the gal who authors it has had a great recovery. Admittedly I found her link on the facebook GBS group. I just can't get into facebook on a regular basis, but it does have an amazing ability to connect people.

Also from the facebook GBS group, I found this quote, GBS also stands for "Getting Better Slowly." For sure! And for some more than others. To everyone, GBS patients or not...let's keep a goin'!

Guest Blogger, Jon Childs

This is his story, in his words (clarifications added by Amy D.)

Diagnosis
"I contracted Guillain-Barre about 12 years ago while brand new to the mission field in Australia. I ate some chicken that was a little too old and got food poisoning, which then developed into Guillian-Barre. Six days after the food poisoning hit is when I noticed things weren't right. I remember I woke up on our p-day (preparation day for missionary work), and I could barely get to my feet. I tried to jump and nothing. I couldn't even stand on my tippy toes. I went to the doctor and he didn't know what to make of it and sent me home until he could figure it out. By that afternoon I could barely walk and steps were out of the question. Luckily the doctor called me back and sent me to the emergency room. They did a bunch of tests and then sent me 2 hours away to one of Melbourne's main hospitals. I got there and received a great blessing (priesthood blessing by members of the church), then they did a bunch of breathing tests then a spinal tap.

Treatment
Luckily Australia has only 20 million people there and the medical care is top notch. I had the white blood cell treatments (likely IVIG) for 5 days then a slow recovery after that.

Recovery
I was moved to a rehabilitation center (right on the beach - very nice) and spent 3 or so months there learning to walk and other movements again. I was able to recover enough to get to go back in the field (serving as a missionary). After 3 months I asked to be taken out of the car so I could walk and bike and get my body back again. It took awhile and I had pain here and there, but walking and riding everywhere played a huge part in my recovery. I pushed myself very hard and after a year of first contracting it, I was almost back to normal and 3 months later I was in better shape then I was when I first arrived. When I came home I was down almost 30 lbs.

Life Now
I look back and think how crazy it all was. The biggest problem I have now, which I hear is a common side effect, is about 2 days a week I will have no energy and just fall asleep. I have fallen asleep almost everywhere."

That is his experience. Thanks so much, Jon for another perspective and example of GBS. Neither Jon nor I had any respiratory depression. I'm sure this would make the course of this illness much different. If you chance upon this blog and have any words of encouragement or information to share, please comment!

Moving on!

As much as I loved the latest post about my one-year milestones, it's time to move on! It has been a busy several months for me and my family. My husband, who is Active Duty Air Force just went to Korea for a year long assignment. Yeah, a little scary to be the lone parent, but I am stronger and I have lots of help with 4 strong and healthy kids at home (well, one is recovering from mono, but since he can still play hard, we figure he can work, too!).

I still have a lot to say about GBS, life, and progress, so I will try to keep this blog alive in a positive way. The same way it started...

One year

A year ago this week, I was experiencing difficulty walking, pain in my hips and legs, double vision and weakness. I was eventually diagnosed with GBS, Miller Fisher variant, treated with IVIG, physical and occupational therapy, and sent home to slowly recover.

It has been a long year. Quieter, calmer, and more reflective than years past.

Today:

• I can walk well
• Lower legs feel heavy, but are usable
• Still no deep tendon reflexes
• Feet still tingly and numb
• Fingertips tingly (tip of tongue, too)
• Endurance much better
• Balance better, still a little more wobbly than my 41 years
• Working some-less than before, but getting back
• Exercising is great (30+ min. w/heart rate up!) at YMCA doing elliptical, bike or treadmill, some swimming, even walking with a bit of jogging outside!
• Soft things are my favorite: blanket, scarf, socks and the stuffed animals the kids share with me

I still take time to rest every day to save energy for the necessary stuff or things I really want to do. Wade does more dishes and can fix dinner at the last minute on days I run out of steam (fewer and fewer, though!). The kids have learned the real meaning of nerves on edge, and other nerve related sayings. I have my moments of overload, but everyone is forgiving and patient.

I love my family and can't say enough about how their love and support is the greatest thing. Mom and Dad, siblings, dear friends, extended family and especially Wade, Jim, Trevor, Mae, and Owen--thanks!

Neurontin

Early on in the course my GBS, the doctors tried neurontin for the pain in my hips and legs. Fortunately it turned out to be very effective with no noticeable side effects, and I'm still taking it three times a day.

A couple of weeks ago I started to feel drowsy occasionally about 30-60 minutes after the doses I took during the daytime, so I wondered if it would help to decrease the dosage a little bit (per my neurologist). I also misplaced one of the bottles of my prescription and figured it would be a good time to see if I still needed the dose I was taking. Long story, short; after a week of trying to lower the dose from 900mg to 600mg every 8 hours, I felt more irritable, tingly and just like not moving, a lot more of the time.

So now I am back to taking 900mg at least for 2 doses a day. If I feel ok at the end of the day, I just take 600mg before going to sleep, then take the normal dose when I wake up. We'll see how it goes, but for now I'll be grateful for how much this medication helps my nerve symptoms, and keep taking it for as long as needed. My neurologist said it could be for at least a couple of years. Speaking of time...(see next post!).

image from patientpowernow.org

Tips and Tricks

A few things I have learned since becoming weak:

• when a door opens inward, just lean into it (throw your weight into it!) to open it
• use a backpack (with both straps)-- hands tire quickly when holding onto a purse or bag
• relax shoulders whenever you think of it... when driving, walking, sitting, eating-- this will release tension
• use cruise! control, that is. Both our cars engage at 25 mph, so it can be used even in neighborhoods. This saves your foot/ankle/leg from applying constant pressure.

Some of these things seem silly, but all conserve energy to be used for specific strengthening exercises or cooking dinner or whatever you really need to get accomplished today, or any day. Think about that! It's worth it to me.

Image found at wordpressblog.com

Time to see the doctor

I have a really nice family doctor. He saw me for a check-up, then a month later saw me in a follow up visit to my first hospital stay, sending me straight to the neurologist who eventually diagnosed GBS.

It was time for a check-up again this month and again, I was impressed that I have such a caring doctor. He asked many questions to make sure that during my relatively slow recovery that I am keeping my spirits up. He is a civilian doctor at the Air Force Base Hospital where I live. I'm glad he chose to work there.

We rely so much on competent doctors to help with our health concerns. As far as Health Care Reform goes, I just hope that it is clear that we need good, smart doctors and we need to compensate them fairly. What smart, caring person would decide to go to medical school if they know they will be poorly paid and have little decision making power in their practice when they graduate? Just something to think about.

image from digital-scrapbook-kits.com

Two great examples

Did you know Rowdy Gaines had GBS? I didn't until I was looking for an online version of a recent recoveree. I remember his name from the 1984 Olympics--he was a swimmer. And he won gold medals (wow!). Anyway, in the 1990's he had GBS and was investigating the LDS church. Story here.

Then here is the article I was looking for in the first place. I asked my young son to read the paragraph describing the onset of symptoms and he recognized those as GBS. The article is about a high school athlete recovered from from GBS in time to play his last year of football. Part of his recovery was shooting baskets and playing basketball. How fun is that?!

Being forced to slow down

Have you noticed that you can learn a lot from things that you don't want to have happen (i.e. trials)? I read The Last Song by Nicholas Sparks this week and was impressed by a quote from page 264.

Strange, what being forced to slow down could do to a person.

Applies to GBS, for sure! In the book, a girl and her brother go from NYC to live with their dad on the beach in North Carolina for the summer and as the pace of life slows down, they learn to be less selfish, more aware, and to love. It's quite beautiful, actually. Didn't know till I was searching for a book image that it is soon to be out as a movie. Hope my favorite quote is in it.