Join the Walk to Fight Mick's MS
For Mick and Debbie Haworth, living with Primary Progressive Multiple Sclerosis (PPMS) is about doing as much as possible to halt the progression of the disease as it continues to take over Mick’s body.
Along with clean eating and exercise, they have taken on the task of raising funds (both here in Australia and the UK) to send Mick to Mexico for Hematopoietic stem-cell transplantation (HSCT) an intense chemotherapy treatment for MS. Knowing it’s a trip that could make all the difference in the world to Mick’s PPMS, Debbie is planning a fundraising walk on February 12 to help get them across the line.
“Mick is getting worse, his walking is deteriorating fast, he has Optic Neuritis, MS Hug - which feels like he has a belt tightening around his waist, his balance isn’t great and he has chronic fatigue but he never complains.”
Mick and Debbie have been together since she was 16 and he was 21-years-old. They’re now 50 and 55 and have forged an even stronger bond since coming to terms with Mick’s official diagnosis of PPMS two years ago.
“Mick has had ongoing problems with his legs as long as I have known him,” Debbie says. “He had numerous tests and no answers for a really long time. He was tested for MS when we were living in the UK but it came up as a negative result so we took that as great news.
“Then about 18 years later and now living in Australia, Mick was diagnosed with Lupus and also needed a big back operation and that was followed by the diagnosis of PPMS. It was pretty hard to hear because there’s no treatment for it here in Australia and it’s a condition that will only worsen over time.”
Multiple Sclerosis means there is damage to the protective sheath (known as myelin) that surrounds the nerve fibres in the brain and spinal cord. This damage causes scars or lesions, in the nervous system, meaning that the nerves can’t send signals around the body properly.
PPMS causes brain and nerve function to worsen without notable periods of remission and relapse. About 10–15% of people with MS have PPMS.
Initially, they were hoping to head to Mexico in February, but didn’t quite reach their fundraising goal and have now pushed their departure date back to May 28. Debbie and Mick regard themselves more as giving members of the community - Mick is a support worker and Debbie is part of The Redcliffe Breakfast Club - but this is one time in their lives they’re turning to others for help. The procedure will mean Mick and Debbie will be overseas for a month, with 12 months off work and no guarantee of success, but this devoted couple are willing to try anything to stop this horrible disease in its tracks.
“We don’t ask anyone for anything, that’s not who we are,” Debbie says. “But the money we need to send Mick to Mexico is hard to come up with on our own. Having to push back our departure was heartbreaking, but we’re trying to stay positive and hopeful that we can still make it happen.
“Mick is getting worse, his walking is deteriorating fast, he has Optic Neuritis, MS Hug - which feels like he has a belt tightening around his waist, his balance isn’t great and he has chronic fatigue but he never complains.
“He is staying very positive, we have changed his diet (much to Mick’s disappointment, haha!), he regularly attends the gym and we go on daily walks, we are doing everything possible to keep him mobile until we get to Mexico.”
Once treatment is complete and they return to Australia, Mick will be on a very strict diet, with no immune system, he won’t be able to socialise or even spend time with his grandchildren. Debbie admits that while they are staying as positive as possible, they don’t want to think about the alternative.
“You always think you have a long time to do the things that you want to do until it’s taken away from you,” she says.
So, how can you help? You can join the Walk to Leave Mick’s MS Behind on Sunday February 12 from Toombul to Redcliffe. You can walk anywhere from 5km up to 30km or whatever you can manage. The cost is $25 which includes a shirt to wear on the walk and there will be prizes awarded to the individual and team with the most sponsors.
To join up for the walk visit https://www.trybooking.com/CEOCLor to make a donation the Go Fund Me page can be found here https://gofund.me/ace58fb3.
There are also opportunities available for businesses to sponsor a kilometre for $50. For further information visit the Facebook page 30K Walk to leave Micks MS behind or Micks HSCT Journey.
What is involved in HSCT treatment?
HSCT is a chemotherapy based medical procedure that ablates your immune system and reboots it using your own stem cells harvested from your blood or bone marrow. This is the only medical procedure currently available that has halted the progression of the majority of patients undertaking it. It is not 100% guaranteed and with PPMS, it has a 65% success rate of halting the disease.
As the aim of HSCT is to halt the progression of the autoimmune disease, any healing of symptomatic damage already done is a bonus and not guaranteed. Some patients have fabulous healing, others see small healing and some will not have any healing and this is why it is encouraged to have the treatment sooner rather than later when more damage is done to the body.