Motor Neurone Disease (MND) might be slowly robbing John of some physical abilities, but his emphatic drive to stay healthy, mobile and make music cannot be curbed.
John has always enjoyed singing, but his MND diagnosis in 2016 poured fuel to this fire and ignited a passion to create. He writes to tell his story and sings to ensure these stories are heard. It’s John’s hope that he raises awareness and funding for research into this incurable terminal disease.
Prior to diagnosis, Brisbane resident, husband and father John Haney, led an active life and worked most of his life in the wine industry. Since diagnosis, and ever in possession of a can-do outlook, John (52) now adds inspirational public speaker, recording artist and MND Ambassador to his CV.
In order to continue to live an active and independent lifestyle, John was on the look out of a health team who would be willing to work with him on his health goals and personal vision for living with MND.
John has been part of the Mobile Rehab family since July 2019 when Mobile Rehab was referred to John and his family for in home allied health services. Mobile Rehab’s occupational therapist Erin, and physiotherapist Paula, now work collaboratively with John and his family, in his own home, on a regular basis.
This multidisciplinary approach means that together, they are assisting John in getting on with his every day activities while helping his mobility and strength. Ultimately, this allows him to continue to spend time with his family; and to make more music.
“Alone we can do so little; together we can do so much.” Helen Keller
John’s health goals are discussed as a group openly. Possible solutions to assist in achieving these goals are devised with input from everyone; the allied health clinicians, John and his family.
“Having Erin and Paula working together with me has been great. They complement each other in suggesting what therapies and solutions will be best for me. The fact that they are both part of the Mobile Rehab team makes things that much easier, knowing that they talk regularly about what will be best for me” John says.
It’s a given that everyone’s health needs and wants are very different. John has very specific ideas about who he wants to work with, in his own home, and help him fight the disease that is robbing him of physical capabilities.
“I look for reliability, professionalism and someone who makes me comfortable. But I also look for someone who isn’t afraid to talk about MND and the challenges that come with it. Erin and Paula did. It showed that they’d done some homework before we first met and so they were well equipped with information on MND and what sort of things I’ll be needing help with as the disease progresses.
Also, humour is a big part of my personality, so I needed someone who wasn’t going to be put off by how I approach things.”
“Occupational therapy is where science, creativity and compassion collide.” Jessica Kensky (Boston Marathon bombing survivor)
Now four years into being diagnosed with MND, everyday life for John is different. Mobile Rehab Occupational Therapist, Erin, is assisting John with his mobility. This is done through prescribed equipment and some simple and complex home modifications.
Erin and John have a great relationship and work well as a team. Together, they’ve acquired assistive equipment, such as a hi/lo bed to assist John with maintaining his sleep, comfort and pressure care needs. They are currently working together to install concrete pathways along the side of his house. This will allow his power wheelchair to access the backyard and the deck.
“If I cannot fly, let me sing.” Stephen Sondheim
John is forging his own pathway as a singer/songwriter and MDN Ambassador and has released a series of songs with the aim to, as he says,
“… get these songs heard by as many people as possible and raise funds to help beat this monster.”
He knows he is lucky – four years is a long time after diagnosis to still have the ability to talk, let alone sing.
“My medical team thinks it’s probably why I can still talk. My diaphragm gets constant exercise, so my voice is hanging in there. I’m a big believer in ‘if you have air in your lungs, you should be using it’.
You can listen to these songs, and interviews with John on YouTube.
“Without deviation from the norm, progress is not possible.” Frank Zappa
To make the most of the equipment that’s been prescribed to John and to get on with everyday activities, it is vital that John maintains a level of fitness, strength and flexibility. Regular visits from Mobile Rehab physiotherapist Paula help with all of this.
John seeks to live a life of quality and purpose. With declining physical function, Paula and John are creative with their approach to strengthening exercises for his upper and lower limbs. Stretching, core and postural exercises and soft tissue massage are also important to ensure flexibility and ease of movement. Everyone has unique needs, and John’s are changing.
It’s not all hands on though. Part of the physiotherapy service includes education sessions with John. Here they devise strategies to continue to maintain strength and mobility. Paula and John work together to help him access to the community, attend social events and go out with family.
“The greatest gift you can give someone is the gift of inspiration.” Cornel West
Despite MND being terminal, John remains positive. He still has his voice and he intends to use it. He is a strong advocate for people living with MND and is always looking at ways to help and inspire others.
If John’s not singing at home (“if you ask my wife, Lisa, I’ve just never shut up!”), or spending time with his family, he guest presents at seminars and additionally, to health students at universities. This raises awareness and means that students can learn about the condition from someone who lives with it – every day.
John also helps fundraise for MND And Me Foundation via the Makin’ Music To Beat MND campaign. Here you can see John’s passion, where his stories come to life through music. Which is John’s way of giving back, as MND and Me have been supporting John and his family since his diagnosis.
“It is not the years in your life but the life in your years that counts.” Adlai Stevenson
Mobile Rehab clinicians know it’s a privilege to be invited into the homes of clients. And sometimes, they also invite clinicians into their hearts. In a case of the clinicians learning from the client, Erin says;
“John is an exceptional person. He’s taught me that no matter what life throws at you there is always a way to keep your head up high. To live life to the fullest and make the most of everyday, follow your dreams and passions in life.”
Naturally, this life education turns to music … and movies; as Paula describes
“He loves his music and is always watching the music channel on tv. He also loves movies and has an alphabetised DVD collection – he prides himself on the alphabetised part. I have learnt from John that despite difficulty, you can still maintain a positive outlook. Also to never give up on everything despite the challenges you face. And he’s given me some homework of watching St Elmo’s fire to help educate me on what great movies really are!”
It’s nothing short of inspiring to see how hard John works in the face of an incurable and terminal illness. Erin, Paula and John are a perfect example of how a multidisciplinary, collaborative approach can make such a positive difference to clinical outcomes. It also helps that Erin and Paula look forward to seeing John each visit. They make a great team as they continue to achieve and set new health goals.
To learn more about MND and John’s story, visit the Makin Music to Beat MND page. If you’d like to help his fundraise for the research into finding a cure, you can donate on the same page.