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.
You Sir are my friend Mentor mate!! You faught for me and helped me get my mojo back love you so much Josh xo
Josh thank you for sharing your inspirational journey. I admire your positivity and mindfulness. God bless you and your family. My
very best wishes
Great writing Josh and thank you for sharing. You are teaching us all how to live, especially on how to live in the moment!
Great blog Josh, keep writing mate.
You are a truly exceptional person Josh
Always thinking of others, Josh always an Educator, always inspiring others to see life’s brighter side.
You are one amazing young man with a beautiful angel by your side . Keep being you Josh wishing you all the very best !!
Hey Josh, keep up! Well said. Sometimes is hard to find the “own purpose” in life, but this is the right attitude.
Great presentation on MSA Joshua
I agree all you say.
I’m MSA-C since 20 years ago.
I’m sure you are right. It’s what I do since 2009 and I just begin to have important problems to move specially in the bed. It’s my husband or my dauthers who help me stand up but I’m sure that help me for desease;
Excuse me for my bad english but I’m french.
I commend you for your will power and your thoughtfulness with this diagnosis in hand. I lost my wife to MSA-C – confirmed upon autopsy – four years ago. I believe she would agree with me that #s 1, 10 and 11 of your 12 suggestions are a skosh above the other nine. Stay strong and continue to bring awareness to the Beast.
I am proud to have met Josh on the brain hub and I am proud of his knowledge and support. Originally from Ireland, I have been in the United States for more than 30 years. I am 54 and was diagnosed with MSA-C which i have had for over 4.5 years. Recently, my 27year old son passed away. I was devastated. Josh was a rock, he was very supportive and helped me maintain my sanity. His advice is solid and positive. This is a horrible disease but he has made it easier to deal with. Thank you Josh! In spite of all your trials and tribulations, you are generous of heart and of sharing your knowledge.
I also have MSA type C.
I particularly like what you say about viewing it as a chronic illness rather than end of life disease. It’s something that I’m coming to terms with at the moment and I find I’m quite stuck. Thank you