I finished the Queen Lilioukalani Outrigger Canoe Race!

    • Anonymous
      September 12, 2011 at 7:37 pm

      Aloha everybody!
      We just got back from Kona, Hawaii. Last weekend we participated in the 40th Annual Queen Lilioukalani Outrigger Canoe Race. It is the largest long distance canoe race in the world. There were 140 canoes racing in the main event. The women race from Kona harbor down to Hoonaunau Bay or 18 miles. The men meet them down there, get into their canoes and race back to Kona harbor. Wendy was in a Master (45+) crew and I was in a Senior Master (55+) crew. I’m 57 now. This was my 7th “Queen’s”, but it was my first race since I went down with GBS in 2008.
      The race is long and hot. Everybody wears camelbacks for proper hydration. I went through 70 oz. of water! I sat in seat 4 which is a power seat. Power? Me? But our steersman (seat 6 in the rear) and I have known each other for a long time and knew that’s where I had to go in the crew. It was so exciting to be in the canoe and racing again.
      18 miles in an outrigger canoe in open ocean is an endurance race to be sure. The main hull must way at least 400 pounds. Add six crew members and you have at least 1200 pounds crashing through the waves!
      I had been working up to it here in the Bay Area for about a year now and thought I was ready, but I bonked at mile 15. You can see Kona harbor by then, but it seems like it just doesn’t get any closer. I came really close to asking the steersman to swap out with me. Steering is more demanding mentally, but not nearly as physically taxing. I was thinking I’m a liability to my crew right now and I should steer. Before I said anything though I started thinking of you guys. Everyone of you. Swapping out to steer suddenly felt like giving up, and not giving up is the one thing I have been pushing since I’ve been on this forum since 2008.
      So I got mad and spun back up. We actually passed a canoe after that! And I finished the whole race. How did we do? Sucked. Something like 73 or 74 out of 140 and 12th in our age group. It was a great experience though and one I’ll never forget. When we went across the finish line I felt each and every one of you sitting right by my side. Good thing you weren’t though, we would have sunk for sure!
      Johnny Mac

    • Anonymous
      September 12, 2011 at 11:12 pm

      That’s awesome, Johnny Mac! Glad you were able to see it through!
      I would love to go canoeing again someday, at a careful pace.

    • Anonymous
      September 18, 2011 at 6:24 pm

      Johnny Mac,

      Congratulations!! It’s wonderful to hear when one of us accomplishes a dream.

      For years my friends have tried to get me to kyak. 30 years post GBS I thought it would never happen, balance off and all. Then I tried and it was really simple. I got the right kyak, wide for balance. Kyaking in the canals in Cape Coral FL helps. I go in and out with the tide. Wouldn’t ever want to stop kyaking.

    • Anonymous
      September 19, 2011 at 6:07 pm

      Congradulations Jonny Mac
      It is always a great feeling when you are able to return to something that you thought that GBS had taken away forever. Your hard work is an inspiration to all of us.

    • September 19, 2011 at 9:24 pm

      Amazing…your out there doing the things you love and that is what people need to hear. makes me me want to call in sick tommorrow. 🙂

    • Anonymous
      September 22, 2011 at 3:50 pm

      How does your body feel after doing such vigorous activity? Only at the 18 month stage and still feel absolutely knackered just walking short-distances – does fatigue still affect you?

    • Anonymous
      September 22, 2011 at 4:02 pm

      [COLOR=”Blue”][SIZE=”7″]WOW! Congrats -[/SIZE] glad you could hear us all cheering and whistling 😀 What an inspiration ;)[/COLOR]

    • Anonymous
      September 26, 2011 at 3:22 pm

      Thanks everybody! I don’t get nearly as fatigued as I used to. When I first got kicked out of rehab I had to sit on a stool in the shower because I couldn’t stand that long. Quit doing that after about a month because I realized I was becoming lazy. Still couldn’t stand for prolonged periods before the backs of my knees got really sore. That gradually went away and I felt I was pretty much back to normal except for energy level.
      I had and still have an enourmous capacity for sleep. I can get up for work or play with only 6 or so hours of sleep maybe three days in a row, but after that I have to sleep for 10+ hours. My normal habit is to go to bed around 11 and get up around 8-8:30. After the Queen’s race I had to sleep 10+ hours for three to four days before I felt back to “normal”.
      The Queen’s race is pretty much the end of the season for paddling except for two long, but fun races. One is from Newport Beach to Catalina (26 miles) and the other is from Molokai to Waikiki (41 miles). Both races are 9-man crews where three people are resting and watering whiile the other six are paddling. Really fun and exciting. See pic. Wayyyyyy beyond me right now, but I’ll start working again in the spring. Who knows, maybe I’ll be able to do the Molokai again in ’12.
      Johnny Mac

    • Anonymous
      September 27, 2011 at 9:22 pm

      Johnny, thanks for the detailed reply on how your body feels and the best of luck with your continued recovery.

      I find it a very fine line to distinguish between tiredness, fatigue, over-doing things, laziness, depression and the side-effects of drugs. The envelope of symptoms for each of these aspects of GBS seems to overlap and I’m not always sure which I am suffering from. Personal experience seems to say that rest is best, but I’m also aware of the laziness aspect and try to push too hard sometimes. You’re definitely an inspiration towards getting better after such a long time.

      Kind regards,


    • Anonymous
      September 28, 2011 at 8:21 pm


      One thing I forgot. I was in the rehab phase and climbing stairs. My house is two story and I neeeeded to be able to climb stairs. So I’m in the hospital maybe a week after I started walking again and I’ve climbed two sets of stairs. All of a sudden both my hands started getting pins and needly again and I thought, “Whoa! Gotta back off.” I sat and rested until the tingles went away. I took it easy for the rest of the day. Haven’t really felt that sensation ever since. Thankfully!
      Johnny Mac

    • Anonymous
      September 28, 2011 at 8:25 pm

      And way to go Kassandra! Sounds like you are a water baby too. Have you ever tried fishing from your kayak? We used to have fishing tournaments from ocean kayaks when I lived in Hawaii. Really fun!
      Johnny Mac

    • September 28, 2011 at 8:44 pm

      While nobody begrudges your fabulous recovery, there are some sensitivities you may want to consider. Not everybody has your experience and many suffer from deficits they may not have overcome or may never. The overwhelming details of your success may depress others. Did you think of that? They all want to be like you, but they may never be. Think of that.

    • September 30, 2011 at 10:16 pm

      Hedley I understand your point at the same time it’s important we offer both sides to the GBS story. I am 12 months into this and have questions as too how far I will progress. Still i am in a different world than i was 8 months ago and try to be very optimistic about what the next 12 months will hold. It’s imortant for the members to hear the positives. This is a great story that should inspire people to try and do more..WHATEVER more may be. New people to this site need to see hope and the realization that in many cases things do get better. Yes we may still have issues even when we have “recovered”. But to share those wins is important for those on this site as well.

      Keep paddlin

    • October 2, 2011 at 10:33 am

      Kevin…inspiration goes so far for me. I am glad if it helps you. There is a subject post here called WHAT’S GOING WELL which has been read by 7,298 people as of today. There are 156 responses about what is going well – a mere one percent. Maybe that’s the place to post progress notes. I never read it because it depresses me. I am 32 months into this illness with severe deficits of two dropped feet, braces, and using a walker or cane to go out. In the beginning, I read these notes thinking wow – that’s going to be me – only to be let down. I found out that you can’t get better by reading anyone else’s success story or any other inspiration. Full recovery lies elsewhere.

    • Anonymous
      October 3, 2011 at 10:26 pm

      It would also be a great story on these 2 threads:
      1. [B]”Success Stories”[/B]

      2. Or on the “On the Lighter Side” thread,
      Under [B]”Our Olympics”, Post Your Progress[/B]

      But I think it’s also important to have it here. Way to Go, Johnny Mac!
      Remember those days in onset when the GBS was so bad we thought we might not wake up the next day. Or when we first started trying to walk again, and wondered if we’d ever be able to do any of the things we could do before all of this. The point is that on this forum we accept each other as we are; we are all different, but we are all in this together.
      “Rejoice with them that rejoice, and weep with them that weep.”

      Having said that, there are threads I don’t post on, because I’m not sure if I might be considered negative, and thereby get criticized and disapproved. Even some of the really positive threads seem to imply that those of us who don’t improve to someone else’s standard or rate of progress aren’t trying hard enough, and don’t have the right attitude. I try to be positive, but sometimes things are really very bad, and I find myself not posting at all during these times for fear of offending the general spirit. Actually, that’s why I started the thread ‘The Complaint Department’; I just wanted somewhere where I could let my troubles out without fear of rejection, and if people wanted to read it or respond to it, it was up to them or not, but I just wanted to be real, and not have to go it alone.

      But how do we know what will depress or offend anyone else? Our struggles overlap in symptoms, but vary in severity and duration. And there are so many other factors that influence each one of our lives that at times it seems that each of us is alone, although we are still connected with others.