The Parkinson’s journey is both individual and challenging. It is an illness that affects all aspects of the lives of people living with the illness and the lives of their carers.
Everyone knows that Michael J Fox has, and Mohammed Ali had, Parkinson’s, but you may not have known about your younger neighbours or work colleagues. Perhaps you had noticed a changed gait, a blanker face, a slight tremor – but that is all.
About 11 years ago when we were walking along the beach, we noticed that one of Warren’s feet left a dragging pattern in the sand. Attempts at diagnosis failed, partly because Parkinson’s is a hard illness to diagnose because of the range of possible symptoms it displays.
Eighteen months later, Warren was referred to a Professor of Neurology, and after some questioning and an MRI, we were told that it was possibly Parkinson’s and given some scripts for medication. If Warren’s symptoms improved after medication, it was most likely Parkinson’s. His symptoms at that time were a dragging foot, blankness of expression (called face masking) and smaller handwriting. There were no tremors, the classic symptom associated with the illness. The symptoms, at that time, responded well to medication.
That evening, we went to our All Saints (Kotara) parish family group for a meal and shared our news. This group, to which we have belonged for about 26 years, has been very supportive.
The following weekend we had time away at one of our favourite places, Crowdy Head, to begin processing what was happening to us. We went to Mass and talked with our former parish priest, Fr Paul O’Neill. This was the beginning of many deep conversations with various people.
Warren continued as pastoral worker in All Saints Parish with Fr Greg Arnold, carrying out pastoral care and preparing liturgies until he found that the daily unpredictability of this disease made work too difficult. As a Uniting Church Minister then working in public Mental Health, I retired from that ministry in 2010 to give more time for Warren and for babysitting grandchildren, as well as for being involved in supply ministries and working under the National Chaplaincy in Schools program.
As our grandchildren in Sydney, (now aged 4 and 6) grew, they would remind their Pop to have his medication. We have learned that medication has to be taken right on time, otherwise its effectiveness is easily lost.
Warren’s symptoms have included tiredness, face masking, change in gait, quieter speech, some falls, some hallucinations and anxiety at different times.
The Parkinson’s community in Newcastle is extensive with people involved in different activities depending on the age of onset of the illness.
We joined PD Warriors, an exercise group for people with Parkinson’s, run by exercise physiologist Michael Barrett who has an interest in brain plasticity and exercise programs for those with Parkinson’s and their carers. What a great program!
The local Parkinson’s choir, with the delightful name of “Shake, Rattle and Roll”, meets weekly and is for those with PD and their carers. As well as social contact, the voice and the brain get a good work out with songs which challenge us.
None of this singing songs like “Daisy”! Much of our repertoire is 21st century like Katie Perry’s “Roar”, where our soul is challenged to roar like the lion! With our just retired maestro, Tim Hall, the choir has written a song called “Friends”. Tim put the words together and performed the music.
I lost my confidence; this has been hard for us but we’ve all found something we couldn’t share.... We’re so much more than just the sum of our parts.
For Christine, a song the choir sings that captures the journey is “Lean On Me”: “Lean on me when you’re not strong...I’ll help you carry on.”
As a carer, it is tough, and she has a small group of Christian friends who pray for her and listen to her. She is hugely thankful for them. With me, she prays the divine office aloud daily. She is a ’fan’ of St Mary MacKillop and seeks her prayers also. When the opportunity arises, we go to the place of Mary MacKillop’s tomb at North Sydney for prayer. She is regularly inspired by the Gospel of John, chapter 1, which describes the coming of the Word, especially verse 14, “And the Word became flesh and lived [or set his tent] among us, and we have seen his glory as of a father’s only son, full of grace and truth.”
Warren was very ill in July and had an unexpected 17-day stay in Calvary Mater, Waratah, with very difficult complications in terms of his Parkinson’s. A care model where pastoral care was integral made his stay more bearable. Deep conversations with the Pastoral Care team and daily Eucharist were part of his healing – and indirectly, healing within me. Visits by Anglican, Catholic and Uniting Church clergy and laity, with parish priest Terry Horne anointing Warren, all reminded us in those dark days that God is truly present in God’s people.
Christine was very grateful at this time for the patience and support of the people of Hamilton Wesley Uniting Church where she is currently in supply ministry.
We appreciate the loving support of our family and friends, including our parish family group and members of Adamstown Uniting Church evening congregation where we also worship.
Mr Warren Sheppard is a former Pastoral Worker at Calvary Mater Hospital and All Saints Catholic Parish. Rev Christine Sheppard OAM is currently supply Minister, Hamilton Wesley Uniting Church.