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Bart Cox - stroke rehabilitation

  • Bart's 2nd Stroke Anniversary

      6 July 2021
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    Friends, I’d like to share with you, my 2nd Stroke Anniversary. It has been a low key day no big party or celebration just a quiet day of reflection.

    5th July 2019 i woke up and my life was completely turned upside down after a clot shot up into my brain unanounced. That day was very cold, grey and dreary and i couldnt get the fire going i tried several times but i’d forgot about what matches are! Lucky i guess? but miserably cold. Neither could i cry for help, though i had 2 phones on me, as the clot had blocked a lot of the signals to my brain and i no longer knew what a phone was! Over the next 12 hours or so it was only going to get worse as parts of my brain started to die. Luckily Willy swung by and found me and got me to the hospital where Izzy and friends helped me get back on my feet over the next two years. I have some of my best memories from these times and i smile when i remember the love i felt towards every single one of you who sent me messages, came to visit or cooked for us or helped with my therapy and so much more. I love you! Today, 5th July 2021, was a stunner, and that is how i am feeling in general, I can’t believe it! I truly never lost my faith but i’m not afraid to say that i have been seriously challenged over the last 2 years. There were times, I kid you not, that i thought that it would’ve been kinder if the stroke just took me on that day. Other times, i thought to myself “well that’s me now, this is my life, what do i do now, what are my options? This society is not built for somebody like me 😞 it was horrible to feel that you don’t belong no matter how hard you try. Therefore, It is the most incredible privilege to feel the way i do on my 2nd anniversary, i know that the outcome was not preordained so have to pinch myself every day. I am so so grateful for how i am feeling now. I have been feeling good for almost 2 months, not fully healed but feeling good and sometimes that is more than you can dare to feel when you are severely struggling with debilitating injury! I still have chronic pain from neuropathic pain and cognition issues but it’s now manageable most of the time. I am not just living i am thriving with enough energy to get through the week and a new job at Wellington City Council that i am truly enjoying so very much.

    Nga mihi ki a koutou you’re all truly loved i hope you had a choice day xo.

    Pō mārie you beautiful people!

    Caption: The three musketeers Mum, Izzy and I having a relax in our favourite position the three of us on the bed with the ipad watching Ru Paul season 13 lol all the jobs done!

    Reposted from a Facebook post by Bart on 5 July 2021: https://www.facebook.com/bart.cox.75/posts/10157903491296034

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    • 06/07/2021 by Simon

      Bart I was thinking only last week how your rehabilitation was going. VERY glad for you mate, it is tough enough to succeed without the chronic pain and issues you are going through but your strength is an inspiration. A job at the council sounds awesome too! Kia ora and power to you from Si

  • International Stroke Day - update from Bart

      30 October 2020
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    Kei te ora tonu ahau! 😜 It’s International Stroke Day today and I’m still alive, yeah boi!

    Shout out to the beautiful people who are the survivors and those who have passed too, from stroke, the whole messy heart wrenching scary beautiful dissolving reckoning insightful hard difficult emotional struggle despairing and enlightening all of that in one single day at times. So all of my love to the families the partners who miss them terribly and those who are still supporting and loving their loved ones who struggle with disability, depression and adjusting to our new lives❤️

    Amazingly, having a stroke helped me to gain so much insight into mums life. I love these moments with Mum [81] who has Alzheimer’s and her son me [43] we both have brain damage but look at these smiles 😜 they are testament to the enduring spirit of human beings that’s us that’s all of us. Hug each other and say “i love you” literally every moment is a gift. #internationalstrokeday

    In honour of international stroke day i like to say something about the experience itself. It can be a lonely path to tread. After stroke people can lose friends, relationships can end, people can take advantage of you, it can be too hard for the support people the family, can lose their lives, job, house, security, mobility, identity and young stroke survivors still have to live out their lives often times with no chance to work or look after themselves for the next few decades............

    So ask a stroke survivor [we don’t bite😅] to tell you about their experience [of course everybody is different so be tactful] because the thing i have found the hardest is feeling alone in my experience and a lot of disabilities are invisible to abled people. It is a thing that people don’t like to talk about the fragility of life I suspect you have to want to be curious, don’t forget that they aren’t stupid they just probably have aphasia Connect with them they’ll be so grateful to feel their experience valued and to feel connected well that’s how it is for me. When somebody takes the time i often leave that moment reduced to tears and that is the best healing. Thanks for reading my post. Mauri ora x

    (Reposted from Facebook post by Bart on 29 October 2020: https://www.facebook.com/photo?fbid=10157378777386034&set=a.45581251033)

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  • Bart saying thank you

      29 July 2019

    A short video of Bart & Izzy taken on 29 July 2019

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    • 06/07/2021 by Simon

      The power of love

  • Thursday update

      18 July 2019
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    Bart had an MRI scan at Hutt Hospital on Thursday and this showed that the clot is diminishing in size, which is great news. Knowing the cause of the clot (see Wednesday's post about the hole in the heart) we can now focus on recovery.

    Bart will be discharged from Masterton Hospital on Sunday and will be returning with Izzy to the Karaka Road house in Eastbourne, and then attending the ABI clinic as a day patient for the next 30 to 40 days.

    Message from Izzy: "Visitors are awesome and important for Bart’s spirit but it’s really hard to deal with people dropping in. I’m planning our days carefully around rest and rehab and exercise and personal cares, so an unplanned visitor can really throw things out of whack and cause a lot of stress. However, planned visits are LOVELY. And the enjoyment of anticipating a visitor gives really nice structure, and Bart can think about what he would like to talk about, and even practice peoples names. Text is best: 027 3808 123 Then I can get back to people in my own time. Suggest a couple of options for dates and times that would work for you. If you are dropping off a meal you can combine that with a 45 minute visit, or stay and have dinner with us.”

    If you want to help out with meals or transporting Bart and Izzy to and from the ABI clinic please check out the Support Crew page via this link: http://bartcoxnz.homestead.com/

    As we’ve said previously we have been completely blown away by the level of generous support that everyone has shown, and the speed at which the initial target of $30K was reached. In addition to the ABI costs we’ve subsequently realised that there will be a whole pile of other costs facing Bart and Izzy (who was supposed to be going to the UK to work there for three months, and who is now is assisting Bart with his recovery full-time) such as transport, and day-to-day costs such as power, rates and the mortgage. We are requesting to Give-a-Little that they change the goal from $30K to “open”. We’re also requesting that the “Use of funds” statement be updated to: "Funds will be used to pay ABI for the 30 to 40 days of therapy that will be required and for the many other expenses that Bart will face during his recovery. In the event that there are surplus funds these will be given to Stroke Foundation NZ."

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  • Great news

      17 July 2019
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    Kia ora e te whanau

    Two great bits of news:

    1) Bart is being released from Masterton Hospital, and will be attending the ABI clinic as a day patient from Monday 22 July.

    2) The doctors have found the cause of Bart’s stroke, which is a hole in his heart, or a ‘Patent Fovamen Ovale’. This can be closed with a device closure, there’s just a few steps and appointments we’ll have to attend between Masterton and Wellington Hospital before this can happen over the next wee while.

    While Bart is at ABI Izzy is going to be taking care of Bart at the Eastbourne house. It’ll be more restful for him to spend his evenings recuperating in the bush there. Any help with food and meals will be much appreciated during this time. To help coordinate this we’ve set up a “Support Crew” page. There is an invitation link below.

    Before you join a couple of points:

    • The link below takes you to a sign in page. There is no group email and password, simply create your own login and password and this will automatically take you to the support page.

    • The page is easier to understand on a desktop view so if you can, I recommend for the first time use it on a desktop (the support crew team said they’re working on a better phone feature for future).

    • On your phone, the default way to help is the “instant ways to help” area – these are paid options (i.e they allow you to order in take out for Izzy and Bart for example) – there should be another option called “offer support” – this allows you to offer something that you can do personally for Izzy and Bart like cook meals or clean the house (whatever you fancy) and is not a paid option.

    • The most important thing to look for are the “needs” / “needs calendar” – this is what Izzy has identified as a need – you can accept this and it will allocate your name to it – that way Izzy knows who is doing it and that it is covered.

    • You do not need to keep checking the page - you will receive an email as "support crew" about new needs etc.

    • Otherwise have a totu and read the info available on the page, but I thought the above would help a bit for the non-tech peeps.

    LINK: https://app.supportcrew.co/register/supportcrew?invitationCode=794306b4-2412-4b2f-9951-7b77506f2f11

    (Thanks Toni for setting this up).

    What is Support Crew?

    Support Crew is a website that allows those dealing with a life changing event to easily co-ordinate the meals and support they need from their friends, family, colleagues, neighbours and the community.

    Need more information about Support Crew? Check them out here: https://www.supportcrew.co

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  • He mihi nui ki a koe

      15 July 2019
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    Nā tō rourou, nā taku rourou ka ora ai te iwi.

    With your food basket and my food basket the people will thrive.

    He mihi nui ki a koe - thank you so much! We’ve reached our fund raising goal in three and a half days. That is just so amazing. Bart and I are just so appreciative of the aroha that you have all shown.

    It is likely that Bart will be going to the ABI Clinic later this this week. We will keep you all updated with progress.

    Aroha nui

    Izzy & Bart

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    • 15/07/2019 by jon

      Ka mau te wehi

      We need your korero

  • Video update from Bart

      15 July 2019

    A short message from Bart, in the gardens of the Masterton Hospital.

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  • Sunday update

      14 July 2019
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    Bart and Izzy had a plant focused day on Sunday - they walked in the bush by the hospital and collected rongoa and made a mind map of tree names.

    We continue to be absolutely blown away by the on-going level of generosity of people and all the lovely comments that are being sent through. We currently don’t have time to respond individually but please know that your aroha & love is very much felt. As at mid-day Sunday the fund was at $25K - absolutely amazing!

    On Friday Bart was moved into the Masterton Hospital Rehabilitation Ward, where he continues to receive excellent care from the doctors, nurses and carers there - a big shout out for their support. The other good news is that Bart has been accepted as a resident for the ABI programme in the Hutt Valley. However, at this time we don’t know when he will be moving over there.

    We appreciate that many of you would very much like to visit Bart and show your aroha. However, it is very exhausting for Bart to receive visitors, so we are limiting it to only a few people a day. Please contact Izzy first to “book in” a time.

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  • Blown away

      12 July 2019
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    We are completely blown away by the level of generosity shown in the first 24 hours of the Give-a-Little. Over $15,000 has been given so far in the first day - this is so much appreciated.

    Photo is of Bart in full explaining mode a couple of days ago - he has to write everything down.

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