I am a Dad, husband, son, brother, friend, and Multiple Sclerosis Warrior.
I have had Multiple Sclerosis for 11 years, and I'm trying to raise the money to have a Stem Cell Transplant and Chemotherapy (AHSCT - Autologous Hematopoietic Stem Cell Transplant). It's risky, but I can’t wait any longer. It's time to do it.
My community, family, and friends, have been wonderful, and so generous, patient, and kind. But I still have a way to go. I hope to start in August.
My only hope of stopping the progression of the MS is this treatment, which is risky, as my immune system will be suppressed, in order to reboot my system. There will be chemo treatment, then home with daily injections; all culminating in 21 – 25 days in hospital, in isolation. The isolation is due to the risk associated with my immune system being suppressed. While the Stem Cell Transplant will not cure the disease, it is hoped that it may slow down the progression a little, and extend my time not confined to a wheelchair, or bed. I hope this will buy me some time to enjoy with my wife, and two children.
Multiple Sclerosis is an aggressive, progressive and degenerative disease that affects the brain, spinal cord and nervous system. There is no cure and no hope of recovery for people living with this disease. Life, with MS, is very difficult, due to the relentless pain, and the soreness that the nerve damage does to my body. Every day. There are no exceptions. I know that there will never be a day off from it. But this is the hand I’ve been dealt, and I need to stand tall, and fight this foe. It’s lonely. It's a case of – “so many people around me, loving me, but still feeling desperately alone”. It’s an illness suffered in silence.
I was diagnosed with MS 11 years ago. I am no longer able to work and this disease robs me of all the joys of life, like playing golf, running and working. The small things we all take for granted, are extremely difficult. I miss the small things - walking down stairs without having to have a hand free, being spontaneous, playing golf, staying up late, and waking up pain-free. I miss what I had planned to do in my life - to ride a bike and surf with Matt, to run with Jess, to go for a long walk on the beach with Doody. But I suppose this is the hand I've been dealt, and I just have to play it. My only hope of stopping the progression of the MS is the treatment.
I also need support. Not only financially, but emotionally. I need people in my corner, to show me, and my family, that we are not alone in this journey. My daily struggles are endless. Sever pain and fatigue, never a day off, and no hope for any improvement. I never take the small things for granted. Sometimes I wish, just for one day, that I felt normal again. Just one day. But it won’t come, so I have to be tough. But I’m tough. I have to be. While there are many things that I can’t teach my children, due to my MS, but I can teach them courage, tenacity, patience, kindness, and love.
I'll keep standing tall, and fighting for my place, because Matt, Jess and Doody need me, and this is not what I chose. Thank you to everyone who has helped me in some small way. I know what you do - I see it all the time - it doesn't go unnoticed. I have had to give up on many of my dreams - but I now have many new dreams. Keep on inviting me to things even though I cancel often; keep telling me I look strong; keep doing the small things for me; and keep looking after my family as they fight with me.
I hope that we can raise the money, somehow. Thank you to everyone for their kindness. Best wishes,
2007 - First recollection of symptoms11years ago, in June 2007, I felt pins and needles in my hands and fingers.
- I thought it was a golf or squash injury.
- I went to my Doc who recommended I go to a Neurologist.
- The Neurologist did an MRI.
- He said that I had Multiple Sclerosis, due to the scars on my brain scan.
- He doubled checked it with an eye test, and a Lumbar Puncture.
- It was confirmed.
- My life changed that day.
First Round of Treatment - 2 yearsI went on injections, every 2nd day for approximately 2 years.
They made me really feel awful, and sick. I would inject into my stomach.
2nd Round of injections - 6 yearsI then went on other injections, once a week, for about 6 years.
- About 2 hours after the injection, which had to be administered into my leg, I could hardly walk.
- The symptoms were dreadful. It made my whole body shake, I struggled to walk, I was cold, I felt like I had flu, I couldn’t hold anything, and I felt sick.
- For 6 years these injections made me feel sick for 3 days after I had them.
- Eventually, I couldn’t do it any longer. I couldn’t feel like this for 3 days a week, other than the MS symptoms, and relapses.
3rd Course of medicationFollowing nearly 8 years of injections I then went on a daily pill.
- I am on a medication that tries to prevent the immune system cells from attacking the nerves in my brain and spinal cord.
- I take medication to calm me down and keep me focused, as my short-term memory is not so good.
- There are too many to mention.
RelapsesOver the years, other than the relentless pain, and fatigue that my MS brings, I would relapse.
- A relapse is an attack.
- It causes new symptoms, or the worsening of old symptoms.
- It’s lonely, and difficult to handle.
- I try to be brave, but the relentless pain, and never a day off, can get to me.
- I would be down in bed for a week, exhausted.