My name is Josh I am 46 years of age. My passions include surfing gardening, travelling, and cooking. I worked as registered nurse for 24 years both in Australia and the United Kingdom.
I have been married for 20 years and have a 14-year-old son. I live in Illawarra in New South Wales Australia. I was diagnosed initially with Parkinson’s Disease and later with Multiple System Atrophy. Prior to my diagnosis, despite all my 24 years knowledge and experience within healthcare, I had never heard of Multiple System Atrophy.
I had been very active prior to my illness. I surfed twice daily and have surfed in many places around Australia and all over the world including the USA, Europe, Scotland, England, New Zealand, the Maldives and Indonesia. I also ran and swam most days. For my relaxation, I enjoyed gardening, do it yourself projects, cooking and travel.
Multiple System Atrophy is a very complex disease and now I have many problems. Looking back on it now, when I was first diagnosed I entered a period where I was in deep shock and was grieving so many losses. I saw a psychologist from the onset of my illness, but still the magnitude of this disease and its problems was making it too hard to cope.
However, there have been a couple of turning points in my journey so far. I had to learn to accept this disease in order to grieve. I have learned to adapt. I have learned that in most situations, my expectations and experiences can be adapted to ensure that I can continue to enjoy life. I met some great friends with MSA online and they instantly supported me throughout. They were empathetic to all my problems. Because of these friendships, I have been able to feel that I am no longer alone and had people who understood what I was going through.
It isn’t easy but I try to treat this disease like a chronic disease and not like an end-of-life disease. This helps me to manage my symptoms, thoughts and emotions I have related to my MSA. If one plans well and one’s expectations have been adjusted, I have found I can still enjoy going on holidays and the like. I have been on many long-distance trips and I have travelled to USA, UK Vietnam, Singapore and Europe since I have been diagnosed. Travelling helps me to enjoy life and it enables me to change my focus and to try to take each moment as it comes. I look at life as a celebration through a lens of compassion, trust and hope.
These are some things that I wished I’d been told known or done since I have been diagnosed. I am including these twelve suggestions because I think they might be helpful to others.
1) Be open to seeing a psychologist or counsellor to help you to manage your emotions, feelings and thoughts, to help you to navigate through your diagnosis and in your personal relationships.
2) Keep moving as much as you can, as this is a big key to remaining positive and managing your MSA and emotions! This could be the exercises recommended by an Exercise Physiologist Physio/PT, going to a gym (if you can) or simply continuing to maintain and adapt your everyday activities or hobbies to life with the diagnosis, to help ensure that you keep moving safely. I hate formal exercises at gyms, so I continue to surf, stretch, walk, garden, shop, cook, dance and basically attempt to live my life as normal, by utilizing past and present skills from all of my life experiences. Also, keeping safe is paramount at all times because it is important to minimize any injuries to your body.
3) Mindfulness. Mindfulness means trying to learn and practice taking each moment as it comes. This has helped me to not worry about the future but to be present for each moment.
4) Develop, rediscover or find your purpose in life, your passion or your interest in life.
5) Adjust your expectations and assessment of your performance in all areas. Try not to compare the present with your past achievements or your skills connected to your hobbies, your relationships or your work. These negative feelings can lead to disappointment as things always change as we get older, etc. Most situations can still be modified, to help ensure that you can do many things, even with Multiple System Atrophy.
6) Try to eat healthy food and drink plenty of water.
7) Avoid infections. Bladder and respiratory infections can be more common in MSA.
8) Listen to your body and get regular sleep.
9) Get connected – Multiple System Atrophy is a complex disease and it can be overwhelming.
You can meet people and get information from support groups. I have found benefit from the Brain Hub, a platform for online support groups and research with two downloadable mobile apps, developed by Defeat MSA Alliance. It has enabled me to develop some good friends and to talk regularly with them, face to face and in real-time. You can sign up and use it for free here: www.BrainPatient.org It was developed especially for the MSA community.
10) Stay Informed. Ask your doctors, therapists and other health professionals questions related to MSA. They are there to help you, so don’t be afraid of reaching out. Also, Facebook has many support groups that can help resolve questions and connect you with research and treatments.
11) Be positive, compassionate to others and above all, remain hopeful!
12) Lastly, I recommend watching this short 38 min film, “Finding Balance” (2019). It is about my mate Kevin, who has MSA-C. He is a legend in our community. The movie is about hope, mate-ship, mindfulness, compassion, the power of the mighty ocean, humanity’s relationship with the sea and the mind’s enduring capacity to help us reset through mindfulness.