Diagnosed with Primary Progressive MS a few years ago, Lorraine — who also lives with fibromyalgia, chronic fatigue, anxiety and depression — says maintaining a positive mindset has helped her mental wellbeing.
‘In early 2022, I had a terrible night’s sleep and then couldn’t walk properly at all the next morning. I emailed my MS nurse and told her I couldn’t walk and had a feeling like bugs crawling under my skin in both legs from toes to hips. The MS nurse told me to go straight to emergency. I lost the ability to walk unassisted and drive in that single night and I’m no longer able to work.
‘I don’t hate my MS, I’m not angry at it. No one caused this to happen, it just did. I call it a wheel of fortune, one day you wake up with one prize, then the next day another, then you get the showcase. So I sit and wait the day out and I think of all the stuff I did that week and think, "that’s okay I got all those things done, that’s pretty good. Let’s see what tomorrow brings".
‘You’ve just got to do what you can do. Don’t be embarrassed to ask for help when needed (something I’m getting more and more use to). I love to treat myself like getting my nails done and try to be kind to myself. I really just want to stay as active as possible, enjoy life, and laugh with myself,’ Lorraine says.
Staying active to live well
Lorraine currently sees physiotherapist, Mahenddra at her home once a week.
‘I’m looking forward to transitioning to the gym at the new MS Plus Wellbeing Centre in Footscray. They have the beautiful table there to lie on, so they’ll be able to do the muscle memory exercises there. It’s going to be so beneficial.’
Lorraine is also loving her new hydrotherapy sessions with exercise physiologist Caitlin, which have allowed her to keep enjoying the benefits of hydro, after her community-based sessions shut down.
‘Mahenddra recommended the new hydro service to me, where I would work with an exercise physiologist. The hydro service came at the perfect time for me, just as I lost access to my community class,’ Lorraine says.
Hydrotherapy is also helping Lorraine to see more results during her physio workouts.
‘Because of hydrotherapy with Caitlin, I’m learning to push myself more during my physio. It will be fun to see what I can adapt from what I’ve learnt in the pool to what I do with the equipment in the Footscray gym,’ Lorraine says.
‘The hydro is easier for me than any weight bearing exercises. I like the traditional exercises too, I do those on a bed or a bench with Mahenddra, but with the hydro I can push harder.
‘I can stand up more in the water (with the rails) and Caitlin can help me more. Having the rails is great. Hydro is a great safety net to give things a go without fear of falling. The worst that can happen if I fall in the water is I get a bit wet and lose my glasses.
Caitlin notes, ‘There’re so many times we complete actions in the water and then have a land-based session and client’s capacity has increased within the same action, highlighting their improved results.
Caitlin says there are many benefits to exercising in water for people with MS and other neurological conditions.
‘Hydrotherapy uses the positive effect of water in many ways, including reduced pain and swelling, muscle relaxation, mental health and overall quality of life.
‘Additionally, because the water is constantly moving, muscle activation is constantly required to stabilise, therefore increasing strength, flexibility, and balance.
‘Likewise, we often see reduced spasticity, so people can complete more voluntary movements, reduced fatigue and improved balance.’
Connecting to support
After her initial diagnosis, Lorraine was introduced to the hospital’s MS nurse. The nurse then connected Lorraine with MS Plus.
‘The next week I called MS Plus and since then my life has changed for the better.’
‘I was immediately put into a Peer Links video call of people newly-diagnosed with MS, so we could learn how to cope with our diagnosis, and also the knowledge we are not alone in coping with MS.
'The information I received was amazing. I later joined a regular monthly peer group meeting.
‘An MS nurse also spoke with the peer group and for me it just made my life make sense,’ Lorraine says.
‘I have sought help from an amazing support coordinator, who helped me apply for NDIS, after spending lots of time on the phone with me over a few weeks to get my story to apply successfully for NDIS.
‘I also spoke with a wonderful social worker, who also spent a lot of time on the phone with me to get my story to apply successfully for the Disability Support Pension.
‘Without the services available to me and others with MS, I wouldn’t be where I am today,’ Lorraine says.
Giving back to others with MS
Lorraine has participated in our last two MS Walk, Run + Roll fundraising events, raising a collective $10,800, along with family and friends.
‘If it wasn’t for the amazing MS Plus team, including the support coordinator who took the time every day over many months to get my side of the story, type up my documents and help me to liaise with the right people to get onto the NDIS, I would be stuck at home and waiting for my kids to take me out somewhere.
'That’s why I wanted to give back with the Walk, Run + Roll,’ Lorraine says.
In 2022, Lorraine was one of 25 MS Go for Gold Scholarship recipients.
‘I lost so much once I could no longer walk independently, drive or work, but what was bothering me the most was my inability to do my hobby, which is to make special occasion cards for friends and family.
‘After winning the scholarship, I was able to purchase an expensive electric craft machine that — with a push of a button — helps me to make personalised cards once again. This has made my life so much easier, happier and has brought back the joy of my hobby.
‘Ultimately, I’m a person first, not just a disability. I’ve put a license plate on my wheelchair and walker, which makes people smile and have a laugh with me, rather than feeling sorry for me when they see me on the street. Little kids love it and I feel like people then really see me, not just my chair.’