Carers Week 2017: Living with Parkinson’s together
Allan Voss is a husband, carer, lover, and friend of Shirley whom he has been married to for over 50 years. Allan recently shared with Parkinson’s Queensland the journey that he and his wife have undergone in the years since they have been living with Parkinson’s.
In 2005 Shirley had an incident in her workplace which highlighted some symptoms that required investigating; including the when, how, and why the particular incident occurred. Not all of those questions were answered, but the answers that were provided “scared the hell out of us,” Allan says. The results were clear; Shirley had Parkinson’s, and Allan would now be Shirley’s carer, and this would be their reality for the rest of their lives.
Allan had no problems accepting the carer role as he considered that was a part of their life together, particularly as they both aged. Allan and Shirley were in their early 60’s at the time of Shirley’s diagnosis and looking to retire from a lifetime of teaching. His first point of call was to answer the burning question: “What is Parkinson’s Disease and where is it taking us?” For several years his task was to help Shirley adapt to a totally foreign drug regimen of taking a set quantity of her medication (Madapar 200) at set times during the day, every day! To get his head around this he spent a lot of time researching Parkinson’s. In hindsight he feels he did not do so well in these early stages, but Allan believes he was as supportive as one could possibly be amidst all of these life changes. Allan knows that Shirley was in the same boat, and they floundered along together.
In the initial stages, caring was not a significant impost as Shirley was coping very well. They were both still teaching and doing so kept their minds alert. Allan and Shirley have two sons who were in their early 40’s during this time, both with their own problems and not overly concerned about Shirley’s diagnosis. To their sons, Allan and Shirley seemed to be coping.
Upon retiring Allan and Shirley sold up their Brisbane home and moved to Caloundra. Shirley was still managing very well. They enjoyed their retirement and began swimming in the lake, walking regularly, riding bikes, and generally leading a very active life. Allan says of this time “we were denying Parkinson’s the chance to take over.” They were learning more about Parkinson’s and realising that exercise was crucial to leading the best life possible. Alongside their optimistic and proactive approach, they noticed that Shirley’s medication amount was gradually increasing, and the duration between doses was decreasing.
Allan and Shirley became involved in the Caloundra Parkinson’s Support Group. They did not know exactly what the benefits would be, but joined anyway and became involved in running the group. “As ex-teachers, what would you expect?” jokes Allan. Running the group proved to be an enlightening experience as they organised various professionals across many allied fields to talk to the group; and questions that they did not even know they had, were answered. Everything grew exponentially from this point on. The Support Group experience has been a major part of their mental health and the notion of having others care about how they were, caring about them, has been invaluable for keeping their heads afloat.
The value of this level of support was never more apparent than when Shirley hit the wall with her medication. It was losing its effectiveness to handle her symptoms; the fork in the road had been reached. This was very stressful for both Allan and Shirley but with the right specialists to handle the questions and options, they prevailed.
Shirley had DBS Surgery (Deep Brain Stimulation) three years ago and the steep slippery slide was arrested to a very large degree. DBS has not been the magic bullet, but it has given Shirley quality of life and has provided regular and easy access to the neurological team that performed the surgery. Allan does not necessarily advocate for DBS Surgery, rather he simply says that “no one should rule out the option”.
For Allan, being Shirley’s carer has been a privilege and a pleasure, as well as an ongoing challenge, particularly as the Parkinson’s has progressed. Thankfully, Allan’s scientific background has prepared him for the task of finding answers and the latter has been great for his mental as well as emotional health. Allan believes he now has many of the answers but acknowledges that there are still many others to pursue. He and Shirley work at this challenge as a team and approach each day as a blessing, one that they are both thankful for. They would not say that they are happy with the hand they have been dealt, nor are they always on the same page, but they try!
Above all, Allan says, “I try, and we try together, to reduce the stresses that can occur, as we both know the impact that these stresses can have on each of us and particularly on Shirley. I am inspired by Shirley’s willingness to accept her lot but also to work both physically and mentally to make it as hard as possible for Parkinson’s to claim her. She has courage to burn.”
We care for carers! In Australia, over 10,200 unpaid carers provide more than 19 million hours of care for people living with Parkinson’s. This carers week, we want to show that carers count and highlight the incredible work that carers do, especially within the Parkinson’s community. We are in this together!
To learn more about Carers Week 2017 go to www.carersweek.com.au.