About

Me: Edward Charles Lunnon

Born 18 September 1956: Stellenbosch, Western Cape, Republic of South Africa 

Educated at:  Hendrik Louw Primary School The Strand Western Cape RSA

Hottentots-Holland High School Somerset West Western Cape RSA

Deputy Headboy 1974

Sulphur High School Sulphur Oklahoma United States of America

Secretary: Student Council 1975

Honorary Citizen of the Great State of Oklahoma USA (conferred 1 Dec 1975)

Stellenbosch University Stellenbosch Western Cape RSA

Primarius Helshoogte Residence 1981

Home Town: Port Elizabeth, Nelson Mandela Bay, Eastern Cape, Republic of South Africa

Became ill: early September 2006 at age 49 

Diagnosed with Corticalbasal Degeneration in February 2007 at age 50

Retired June 2007

Married to Pera Claire Lunnon (née Southwood)

Two Sons: Sean Charles Lunnon (born 20 May 1992); Phillip John Lunnon (born 7 July 1995)

 

Ed has spoken at and acted as MC at many public and private functions. He is available to speak at your next function. Please contact him by leaving a request/comment here or via email live.life@worldonline.co.za.

 

My Illness: CBD

Definition

Corticalbasal degeneration (CBD) is a rare, progressive, neurodegenerative disease that causes movement disorders and dementia.

Description

CBD occurs when brain cells in two areas of the brain—the cortex and the basal ganglia—die off. The cause of this neurodegeneration is unknown. CBD is also called corticobasal degeneration, cortical basal degeneration and corticobasal ganglionic degeneration.

For more information, go to http://www.curepsp.org   or www.answers.com/topic/corticobasal-degeneration

 

Our Trust: LUNNON FAMILY TRUST

The Lunnon Family Trust has been established to ensure the continuing education of Sean and Phillip and to assist with ever-increasing medical costs. 

We are grateful for all donations. Personal acknowledgments will be made if details of the donor are forwarded to live.life@worldonline.co.za

Trust Details:

Name:   Lunnon Family Trust   Bank:  Standard Bank Port Elizabeth   Code: 050-017-00    Account No:   083 674 675

Trustees:

Andrew Barton BCom (Hons) MBA  •  John Clarke MSc HDE  •  Robert Elfick CA (SA) MBL

 

Our grateful THANKS to the following:

♥ Anonymous Sponsors  ♥  AlgoaFM  ♥  Andre Roos Brokers  ♥  BlueWaters cafe  ♥  Cool Projects  ♥  Dr Rod Butters  ♥  Dutch Iris Design  ♥  Online Innovations  ♥  Peugeot Port Elizabeth ♥  Siyaphambili Print  ♥  Specsavers SA  ♥  Specsavers The Bridge Port Elizabeth  ♥

39 comments on “About”

  2. Hi there,
    You make me happy and i love listening to you on the radio..I think you and your family are amazing..Keep it up.See you on saturday.
    Love Kitty

    Reply

    • Thanks Kitty. Appreciate you listening and taking the time to comment. We are sustained by those of of you around us – thanks for all the support! Regards Ed

      Reply

  3. i have listen to your talks on the radio and my wife has given me the blog address. I was
    deeply move at your courage and how you look at life. my son willem has parkinson. he
    also have the same outlook at life as you.willem is only 33 years old. but he also believe
    in his god. i pray for both of you.

    Reply

    • Hello! You did not leave your name, but thanks for writing. Give Willem my regards and I do hope that he listens to the radio too. Staying positive is so important, and God is so important in enabling you to do that. Stay strong. As a caregiver you too need the strength to carry on. Thanks for all you do for us and for your prayers. God Bless! Ed

      Reply

  4. Hi there Ed
    I sometimes listen to you on the radio. My son is now 16 and has Spino-cerrebelar degeneration. Keeping a positive outlook on life is so important but so difficult. Thanks for your positive words.

    Anthony Marriott

    Reply

    • Thanks Anthony for taking the time to write. Yes, staying positive is not easy – yet we DO have so many things that we take for granted and only see the negative. That’s why I am now forcing myself to daily write down 1 thing that makes life special. (See “For what we are about to receive …” on this blog site). Give my regards to your son – we have two and they are very special. Stay positive yourself – we often forget the caregivers who are so affected by our illnesses too. Caregivers are themselves very special! God Bless! Ed

      Reply

    • Hi Anthony

      Hope you get a chance to listen in again! Keep your chin up and give my regards to your son.

      Thanks for writing in to me.
      God bless you
      Ed

      Reply

  5. I am based in Bloemfontein at the moment, but my husband is working in East London/Alice at Fort Hare. I will be joining him later this year, but was visiting for 2 weeks at the beginning of May. I listened with great interest to your spot on Algoa each week, and it was only at the end of the last one that I realised your name was familiar! I went to HHH, and I’m sure your sister was a year or two behind me. (I matriculated in ’76). If I remember correctly, she sang very well, and quite often sang solos at school and also at the Methodist church, which I attended. I just can’t remember her name…
    I had 2 brothers – Gordon and Paul – who were both diagnosed with MS. Gordon was unfortunately shot and killed during an armed robbery at Lakeside Spar almost 4 years ago, shortly after he was diagnosed. Paul is a farm manager in Prieska, and battling with deteriorating sight, impaired swallowing and gradual loss of muscle tone mostly in his arms. He gets really depressed, but it’s not in his nature to show his feelings, so he jokes and most of the time manages to hide his frustration very well. There is a poem called “Not Waving, But Drowning” by Stevie Smith which I am reminded of whenever I meet up with Paul.
    He is not the most technical of people, but I am going to try and encourage him to check out your blogs as it may help him feel less isolated – Prieska is a very tiny place, and he doesn’t have much support from his wife, who is still very angry at the fact that he is “ill”.

    Reply

    • Thanks for your note Janet and for listening to Ed’s in Wed. I matriculated from HHH in 74 and Ingrid, my sister, was headgirl and matriculated in 78. Please give my regards to your brother Paul. MS and CBD have similar symptoms but different causes. So I think I know what he is experiencing and surely hope that I may be of some assistance.

      If he has internet connection, he can listen to the programme via http://www.algoafm.co.za.

      Please stay in touch.

      Regards
      Ed

      Reply

  6. Hi Ed
    I happen to listen to Algoa today and for the ist time heard you. I found it overwhelming that you are so positive and when you commented about the fogg and the beauty of it it made me realize that we have so much to be thankfull for yet we perfer to complain. I do not know anything about your illness but after I got back to the office I went to your blog and I can just say again that you are amazing. I will keep you and your family in my prayers and will regularly check on you. Stay as positive as you are and once more I take my hat of to you. God keep and bless you.

    Reply

    • Hello Charmaine (?)

      Thanks for listening and thanks for taking the time to write. We really appreciate your prayers and good wishes.

      There are two songs that are very special to me – Bett Midler’s The wind beneath your wings and Josh Groban’s You raise me up. It is God working through people like yourself that raise me up and are the wind beneath my wings. You keep me going.

      Thanks so much, and yes please listen again and stay in contact. You can also submit your email address on this site and get emailed copies of all my blogs.

      Regards and God bless you too.
      ED

      Reply

  7. Hi Ed… your blog link was sent on to me by Karin Holzhauzen. Don’t know if you remember me, Marlene van Zyl (now Van Jaarsveld). So interesting and inspiring to read your blog entries. Looking fwd to further entrries!
    Regards!
    Marlene

    Reply

  8. Dear Eddy
    What a pleasant surprise it was to hear you on Algoa, sad and inspiring at the same time! I was at school with you and Ingrid at HHH! Mariette is my elder sister, who you will also remember, she now lives in Paarl. We lived on a farm just outside of Somerset West and travelled to school by bus every day. We all sang together in the school choir with Mrs Hendriks and I remember those days with fond memories! Those days choir was very cool! I was very short those days and had to make some of the sound effects, to my mom’s shame! My parents now live in Heritage Manor, a retirement village in Somerset West. My mom is not doing so well at the moment as she suffered severe epilepsy due to a brain tumor on the 24th of December last year. She has had many operations this year and has deteriorated so badly that she might not even get out of hospital again! This difficult time in our lives has taught us so much! At the moment I am celebrating my mom’s live and what she has taught us! You are a wonderful example of the way that we have to celebrate life and live it to the fullest while we still can! You were always one of my favourite seniors at school and now I’m so proud to hear that you are an inspiration to so many people. I live on a farm in Cradock, not so far from you, if you ever need to get away, you and your family are so welcome to come and stay, we have a huge house and we always have people and place for more! Keep up your wonderful work, I’ll be praying for you and know that God is Great!
    Lots of love
    Alma

    Reply

  9. Hi Ed

    I dip into your blog every now and then and find it quite an emotional experience. I suppose it is the combination of your reflections highlighting the things I hold dear about PE , South Africa, Grey, but mostly about God’s blessings of everyday life and family. So, thanks for all that and the inspiration you and your family are to me (and I expect many others) on lifes’ journey.

    God bless.

    Francois

    Reply

  10. WOW – SO INSPIRED BY THIS VERY SPECIAL MAN!!! ALWAYS LISTEN TO ALGOA AND HAVE HEARD SNIPPETS OF THE TALK WITH LANCE HOWEVER, THIS MORNING I MADE A POINT OF LISTENING TO THE ENTIRE TALK AND WAS SO TOUCHED!!!!
    THANK YOU SO MUCH….WILL KEEP ED AND HIS FAMILY IN OUR PRAYERS,
    GOD BLESS
    ESME CAWOOD

    Reply

  11. Hi Ed, I often hear you speaking on the radio and promise myself that I will somehow communicate with you. I often wondered if you are the Ed Lunnon that I remember meeting fleetingly once at your home in the Strand. I also studied at Stellenbosch but was in the residence you guys looked down on from your 7 stories, Simonsberg. I met you once when coming to visit your sister Ingrid, who I believe is also connected to Grey via her husband Anton Scholtz. I am sure you will not remember me.

    I find your courage amazing and can only marvel at the way you face life. I want to wish you all the very best and pray that your family will have you around for many decent years together. I have a farm just outside the small village of Nieu-Bethesda, near Graaff-Reinet, which I have recently leased out to my neighbour for 5 years, to run a business in East London and intend returning once my kids are educated at Kingswood College.

    All the very best.
    Kind regards.

    Reply

  12. Hi Ed , I came across your blog when I was looking up Karoo farm houses. Just wanted to tell you about a church in Stillfontein where plenty of miracles are happening. Look up Spiritword ministries Kobus van Rensburg. Ignore the negative comments written about him, this normally happens with an anointed men of God. In Cape Town there’s Dr Robbie Cairncross who also has an incredible healing ministry. He can be contacted on 083 989 8149 / 022 492 3033. Keep well Vanessa.

    Reply

  13. Hi Ed
    I listen to you on the radio whenever i get a chance. My sister was diagnosed with motor neuron in 2005 at the age of 40 and my family and especially my parents looked after her and her young kids. It is very hard on everyone and whilst one tries to stay positive, it is easier to come across as positive for everyone else than to always feel it yourself. My prayers and best wishes are with you and your family and remember it is important that each of you make time for yourself, just some breathing space to help you get through this. My very best wishes to all of you.

    Reply

  14. Hi Ed ….thanks for the kind words and posts for my father Vaughn Jones.
    BTW dead poets society and Robin Williams was his inspiration for shaking off the old English teacher stereotype and resulted in the Top Gear Friday’s and peer pressure tactics he used to keep the boys in line at Grey .

    My dad at 61 squeezed the lemon juice outta life.

    Carpe Diem indeed…… the Jones family.

    Reply

    • Thanks Brynn he was and remains a real inspiration to so many! I’m sorry I didn’t get to speak to you at the funeral. Where do you live? Stay in touch! Ed

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  15. Hi Ed, I’ve recently been diagnosed with CBD, symptoms started about 3 years back. My neuro referred me to Prof Carr, who mentioned you. Not sure he is aware how active you! I am 59 and have just been placed on medical boarding from an academic post at UCT. Would be good to chat about the journey ahead if you have the time and inclination.

    Best, and thanks for the blog. I started one on my occupational therapist’s recommendation. Your’s is way more cheerful 🙂

    Kevin

    Reply

    • Hi Kevin .. It’s great hearing from you albeit in these circumstances! Would love to meet …I’m in PE but come from strand. Email me then I’ll let you have my cell.

      Suggest you read some of my blogs and website … It’s part of the journey.

      Tomorrow I’m off to a funeral of a CBD patient here in PE … So one in and one out! You’ve got to retain your humour …. It’s a long and winding road!

      Regards
      Ed

      Reply

  16. Hi Ed.
    Please send me stunning message/quotes from your chat this morning.15 April 2015.

    Kind regards
    Ros

    Reply

  17. Hi
    My husband has CBD. He was diagnosed at the age of 50. I follow your blog. I understand everything you are going through. If it is possible I will like to speak to you personally and your wife. We have so much in common.

    Reply

  18. Hello Ed …I noticed on your site you mention the Bar Bonanza at the Elizabeth hotel in Port Elizabeth. I have so many fond memories of this pub from my years in SA listening to the G&T band.

    Your Arkansas neighbor,
    Ken
    email kenfoxx@msn.com

    Reply

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