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1km a day in May for MSA

  • The grand finale...Day 31 of 31

      31 May 2023
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    Day 31 of 31 ✔️🏊‍♀️💜🙌👊

    Whoop there it is!!!

    Day 31, and what a grand finale that was!

    I was pleasantly surprised by many great people joining me for my final 1km (not just Nic and Ryan 😉).

    The Naki dippers and the New Plymouth Swim Squad (NPSS) are two groups of people that have the kindest hearts... they swam with me in 15°c water - that's commitment 😜

    And if they didn't swim, they stood in support to watch us swim the 1km in chilly waters 👍 (Mother in law (Gail), Father in law (John), Julie (Naki dippers), Matt, Brooke, Paris and Kyle (NPSS) and Susan and Kerry (special friends).

    Your support meant so much.

    The food, yummy hot chocolate, balloons, gift, and amazing cake were SO thoughtful and didn't go unnoticed - just a shame that Phil missed put due to Riley not being well and needed time at home to rest, which helps them both).

    Thank you to you all x

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  • Group 1km swim, Kohimarama - Auckland

      30 May 2023

    Myself and Phil were so overwhelmed by the support of friends, family and the whole swimming community - it was truly an amazing morning with everyone.

    Saturday 27th May group 1km swim was epic! 84 swum the route but there were many more that jumped in early to do more km's or who had swum earlier that morning, in support 🙏

    A huge thank you to all those that helped coordinate prior to the event, that brought food down to enjoy afterwards and that looked after Phil and Riley for the morning - I couldn't have done it without you all.

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  • Group 1km swim event success! 🙌😊🙏

      15 May 2023
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    Day 13 of 31 ✔️🏊‍♀️💜 and it was SO special - I did it with 25 other beautiful swimmers that came and supported me, as well as raise awareness and donations for MSA 🙏

    The weather gods turned on the blue skies, calm waters, and low winds so that all swimmers could enjoy the magic of the water ✨️🌊

    It started at 8.20am by setting up the gazebo, placing the spot prizes out and the sign up sheet, so people were safely accounted for. Once the final swimmers finished signing in, there was an event briefing, followed by a course map overview (as it was tweaked slightly due to low tide).

    There was a mixture of wetsuit and non wetsuit swimmers 🙌 and a great number of tow floats 🙌.

    While 25 swimmers took to the water, spectators, including Phil and Riley, got to enjoy the sandy shores and warmth from the sun - it was perfect 🥰.

    Once the 1km anticlockwise lap was completed, swimmers and spectators enjoyed yummy home-baked treats and warm drinks while sharing stories about the mornings refreshing dip.

    I am beyond grateful to all those that came and supported, spectated, swam and donated. THANK YOU X

    #swimformsa #1kmadayinmayformsa #fundraiserformsa #community #connection #oceanswimming #makingthemostoftoday #beyondgrateful

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  • Light it up! 😊💜

      12 May 2023
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    How super cool is this...the clock tower in the centre of New Plymouth is lit up purple in support and to raise awareness of MSA 💜...a first for New Zealand!!!

    Other countries like Canada have lit up Niagra falls and the tower in Toronoto, so this is super exciting.

    This would not be possible if it wasn't for Katy Sigurdsson, a local in New Plymouth, who heard of Phil's story and felt compelled to help 🙏 She didn't know either of us but she knew the best people to ask, and it worked 😊.

    For me this presents communication, that people are talking...through talking people relate and connect, it is beautiful.

    If you're in town, check it out.

    If not, please share to help raise more awareness 👍😊

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  • Don't brush it under the rug!

      4 May 2023
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    I'm not one to rush to the doctors because I believe that our bodies are designed and capable of handling the common cold but when things are 'not normal', then it warrants a doctors visit.

    Unfortunately my husband has had symptoms for the 12 years that I've known him and possibly even longer than that.

    - Waking up in a pool of sweat and having to change the bedsheets, is not normal.

    - Having intense nightmares and acting out by thrashing around and hurting us both in the process, is not normal.

    - Not being able to empty the bladder and physically pushing down to help, is not normal.

    - Feeling dizzy after walking up a set of stairs can happen but not daily and for a fit 40 year old, it is not normal.

    There were reasons..."I'm getting older", "I'm not as active as I use to be", "maybe it's from years on the bike saddle"!

    But it wasn't until the dizziness became so frequent that it led to a doctors appointment and with various scans and assessments, it led to a referral to a neurologist. The neurologist in Auckland, Dr Mark Simpson, could see quite quickly that Phil had a neurological condition - by the way he walked, the stiffness of his arms and the slight quivering of his tongue! With a few more tests, Mark was able to narrow it down to MSA.

    Knowing sooner wouldn't have changed the diagnosis but it may have given Phil some ease and support with the symptoms.

    All I'm saying is, don't brush it under the rug.

    Your health is greater than wealth.

    If you feel something is not normal, go to the doctors 👍

    What is MSA? Below is a good link to share morw👇

    https://www.mayoclinic.org/diseases-conditions/multiple-system-atrophy/symptoms-causes/syc-20356153

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  • ALL the gear, with a fair idea! 😜

      30 April 2023
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    I am getting my gear ready for the next 31 days of swimming 1km (40 lengths) and wanted to share what it looks like.

    I will mix up my swims between the pool (Todd energy aquatic centre) and the beach (Ngamotu beach).

    I will mix up how I complete my 1km swims - use a variety of strokes (freestyle, backstroke, butterfly and maybe a little breaststroke but not my favourite 😉) and also what pool toys I use 👍

    - Hand paddles

    - Pull buoy

    - Ankle band

    - Fins

    - Front snorkel

    The one thing that is certain is that I will be doing it for my husband - he has been absolutely amazing throughout this lead up, has always supported me and been open to sharing his story, to help raise awareness and donations for future research 🙏 I love him deeply ❤️

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  • We made the front page of the Taranaki daily news!

      28 April 2023
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    Blown away - the Taranaki daily news were super keen to help share our story and so we had a lovely journalist (Helen) and photographer (vanessa) come over and get the core of our story, over night they pulled it together and was on people's breakfast tables the next morning!!!

    ...now our news is out and you know what, it feels good to be closer to my true self - since Phil's diagnosis I have hidden a huge part of my life because it isn't something that can easily slip into a conversation over coffee! But now, it feels better and with the hope of more people talking/sharing as you don't know what others know 😊👍

    https://i.stuff.co.nz/taranaki-daily-news/news/131878143/from-fit-and-healthy-to-struggling-to-talk-and-walk--a-taranaki-fathers-struck-down-with-rare-disease

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  • Stepping out of our comfort zone

      20 April 2023
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    One thing that my husband has never done, he has never pushed my passion, dreams and vision down - he has fully supported me in all my new endeavours...fundraising on his behalf, being one of them.

    However, more recently he could have easily said 'no, I'm not ok with this' to my latest suggestion, but he didn't. 🙏

    We're very fortunate to know Guy Pigden, a film maker in Auckland - our paths have crossed through MSA as we are both on the board as members for the MSA NZ charitable Trust.

    Guy wanted to capture us as a family, how we manage day to day and also my training to support 31 x 1km swims in May!

    Both myself and Phil were very unsure when Guy came with a car full of lights, cameras and audio devices 🎥 but he made it so comfortable with his gentle presence and guidance throughout the interviews and filming process.

    'Why we choose to fight MSA' will help raise awareness of this rare disease and hopefully help those suffering to get the support they deserve; physically, mentally, emotionally and financially.

    It is an extremely tough deal to be handed and one that I wouldn't wish upon anyone but we fight - we have to.

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