Hello Buoys!

Discussion in 'All Discussions' started by Betty, Jun 26, 2021.

  1. Betty

    Betty Well-Known Member

    Oct 14, 2012
    This article is such an inspiration:
    https://www.abc.net.au/news/2021-05-14/ocean-loving-volunteers-ms-jims-swim/100117816

    Life has thrown me some tremendous curves and the last time I was in the water was 2 years ago. That was the last time I was even able to leave the house. While Ihave MS, it is mild, but a new aggressive much worse autoimmune neuro disease , very rare (400 people in USA) started about 4 years ago and ramped up 2 years ago.

    Recent surgery had my surgeon tell me it will be a “Game Changer” and that I will be able to get back into the ocean. He said,”I don’t know anyone who surfs at your age, I tried it once years ago, and I couldn’t even stand up, so I gave it up”…. To which I said, “You’re lucky,surfing will ruin your life, it will be all you think about, all you want to do “ etc.

    The surgery will gradually increasingly put medicine directly in my spine so that my legs will be able to walk short distances, and my muscles will stop twisting to the side.

    I am thrilled that there is hope. The pump will be in the abdomen, so I am thinking of having a board shaped with a slight indent to accommodate it.



    I good ride or wipeout could conceivable dislodge the device, creating a life endangering situation, so caution will be the word and my crew will help out. I know I would be able to handle flat waves, paddling around with the crew, watching the ocean creatures like manatees swim under the board, breathing in the salt and touching the Face of God. I am pretty sure I will be able to do a 1-2 foot wave, either standing or belly riding. There is always the much sneered at body board!

    My home is filled with surfing photos of me in the past, such a source of delight and bittersweetness. When I meet with a new doc, I always show him/her a pic of me on an overhead wave, so they don’t look at me as a broken down old woman who is a non person. It works.

    The machine wont be fully ramped up until maybe September or so, depending. But I am patient. My crew stands ready and willing and I know the locals will help out.

    Stay tuned….
    Once a surfer, always a surfer…
     
    Last edited: Jun 26, 2021
  2. pdub

    pdub Active Member

    27
    May 31, 2013
     
    World B Free, Manik and Betty like this.

  3. World B Free

    World B Free Well-Known Member

    614
    Feb 7, 2013
    Ms. B,

    You have always been an inspiration. You are a fighter and I will forever be in your corner.

    Please keep us appraised of your status and if there is anything that we can do to help.

    When things get tough the tough guys will remind you...Betty would go!
     
    sisurfdogg, pdub, Manik and 3 others like this.
  4. Betty

    Betty Well-Known Member

    Oct 14, 2012
    Thanks guys :)
    I meant to add I was at the cancer infusion center where people get I V treatments for cancer and other stuff. This guy sits by my seat and he has a black mask with shark teeth on it.

    He also had that “surfer Look”, messed up hair that isn’t blow dried , and Vans Sneakers.

    So I gave him the Shaka sign and we had a fun time talking about surfing. A real bright spot for both of us! Haven’t seen him since: Must be on a different story. But you can bet I will swap stories with him :)

    He is still surfing! What an inspiration.

    I feel like I can recognize a surfer when I see one. They have a certain tell on them. It’s like that Triphid sci fi movie where the aliens recognize each other :)
     
  5. antoine

    antoine Well-Known Member

    Mar 10, 2013
    Super cool to hear from you betty.
    Ill grab a few waves for ya until you can get your own.
     
    World B Free, Betty and Manik like this.
  6. Manik

    Manik Well-Known Member

    709
    Dec 25, 2015
    Wow Betty, you are the true epitome of stoke and aloha spirit. There is nothing wrong with a good belly ride, I really hope you get a chance soon to get back out. Nothing but respect to your crew, if you ever head north I would be honored to be a part of it.

    Betty would go.....
     
  7. antoine

    antoine Well-Known Member

    Mar 10, 2013
    So soon?
     
  8. seldom seen

    seldom seen Well-Known Member

    Aug 21, 2012
    Much love to you Betty so nice to see you on here!
     
    Betty likes this.
  9. Betty

    Betty Well-Known Member

    Oct 14, 2012
    Nice to see you too
    Now that the incision has healed, I can see that the pump is raised above the level of the abdomen like a thick deck of cards. I am trying to figure out how I can wear a Wetsuite that can be loose enough around the pump area, which is left side of the abdomen about 3 inches below the bottom rib.

    In the summer: no problem, no Wetsuite is needed. But 3/2 is needed for autumn and winter ocean.

    My favorite wetsuites are either sealed, or sealed and taped. The flat lock seems pretty cold, letting in more cold water continually.

    I doubt I can just bring a couple of my former Wetsuites to a local seamstress and have them cut open the abdomen area and put in a looser piece of neoprene and then seal it.

    Ideas Buoys?
     
  10. curl

    curl Well-Known Member

    312
    Apr 30, 2013
    Sail shops may be of help Betty.
     
    Betty likes this.
  11. Betty

    Betty Well-Known Member

    Oct 14, 2012
    Thanks, What is a “sail Shop”?
     
  12. Manik

    Manik Well-Known Member

    709
    Dec 25, 2015
    The only thing I could think of would be a wetsuit a couple of sizes too big, with a couple of rashguards underneath. Maybe the xtra big wetsuit won't tight on your side and the rashguards will still help with the cold? It's a tough one Betty. The only other thing I could think of would be to cut out a patch on your wetsuit right on the area, maybe sew something over or try with that spot exposed. Actually talking to a seamstress might not be a bad idea.
     
    Betty likes this.
  13. headhigh

    headhigh Well-Known Member

    Jul 17, 2009
    I would call a couple seamstresses. In a beach town i'm sure one would have experience with a wetsuite.

    Other option would be to DIY. There's some wetsuit glue called "Seal Cement" that I have patched old suits with. Holds up for years. I would cut a hole, glue a patch in place with the cement, and then run some stitches thru while it's still wet.
     
    Betty likes this.
  14. antoine

    antoine Well-Known Member

    Mar 10, 2013
    Ill just bet s.I will sponsor you and get you a custom suite. I mean... They treat us like family here!
     
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  15. Betty

    Betty Well-Known Member

    Oct 14, 2012
    All Great ideas Buoys :
    As soon as my body is nearly ready to get back into the ocean, I will also contact Antoine re getting a custom suite.

    When I went on line, one can order a custom suite on line but they are like in the $400 range, and since they don’t see the issue in person, it could be $400 for nothing…
     
    antoine likes this.
  16. Peajay4060

    Peajay4060 Well-Known Member

    Nov 14, 2011
    Hi Betty,
    Yous one strong Lady.

    i would imagine when custom ordering a suit you can probably submit a photo or do a video chat with a rep that they can add to your order info so the people building the suit have a reference. Maybe keep to a smaller suit company like Hyperflex. contact them and tell them your story and if they are who they claim to be they would love helping you out.
     
    Betty and antoine like this.
  17. Betty

    Betty Well-Known Member

    Oct 14, 2012
    Thanks Peajay!Today was the first day post surgery the doc cleared me to swim in the pool. I wear light Wetsuite top and Wetsuite bottom because it’s chilly for this Floridian even in 78F weather.

    So, I tried out a few permutations. It seems like the only way this wil work out for surfing in the winter. Is to buy a suite that is too large for me from the thighs up to a bit higher than the bottom of the rib cage…And then alter the suite so that the rest of the suite, (the chest, the legs from the mid thigh down to the ankles , are snug like usual.

    It will be costly and might not work, but I will try it.
    In the summer of course, its rash guards and that’s not a problem, just wear a looser one. basically, this pump makes me look 7 months pregnant with a deck of cards sticking out just left of my naval. It will be hideous, but my charm and face will compensate for it :)
     
    Last edited: Aug 2, 2021
  18. Peajay4060

    Peajay4060 Well-Known Member

    Nov 14, 2011
    Hey Betty I sent you a note( I think)

    Hyperflex gave me a note regarding custom suits. I Sent you the contact info
     
    Betty likes this.
  19. dave

    dave Well-Known Member

    439
    Dec 11, 2008
    Wingnut from Endless Summer 2 has MS, I think for around 20 years now. I met him around 2005 and someone was interviewing him about it, and he said while it didn't help he had a mild case and it didn't impact his surfing too much. I'm sure you can find some stuff about him.
     
    Betty likes this.
  20. Betty

    Betty Well-Known Member

    Oct 14, 2012
    Hey Dave, yes I knew about it. I had read it took him off the tour but is mild enough that he is still one heck of a surfer.

    This is a very cool video: He made a virtual reality surf movie for his buddy who had more serious MS and could no longer surf. The buddy puts the oculus rift head gear on and he looks and feels like he is surfing. It’s short and fascinating and heartwarming. And free to watch. It was commissioned by the National MS Society.

    The MS did not stop my surfing, but this new rare neuromuscular disorder sure did. It’s been almost two years. Reallly hoping this Intrathecal baclofen pump allows me back in the water in some form or another!



    This link shows “Sorry you can’t play it here. Just click on the work vimeo and it takes you to the video. It is a two minute video. Very cool
     
    headhigh likes this.