Page 13 - TalkCare_Issue5_Online.qxp_OACP Talking Care Issue 4 July 2017
P. 13

 This is...
Briony’s story: Travelling with Parkinson’s Disease(PD)
  There is no one way to diagnose Parkinson’s Disease, but there are signs that can be considered indicators. For instance, some five years before her diagnosis, Briony began to experience stiffness in her back, neck, and left arm, unable to explain away her aches and pains, she sought help from a chiropractor and then from a physiotherapist specialising in sports injuries.
Briony explains, ‘I had my back scrunched and twisted, but it did not improve. My symptoms persisted and I could contain my curiosity no longer. I decided I would be brave and consult the oracle, a tatty old paperback of medical symptoms, last referred to when expecting babies. I found ‘Parkinson’s Disease’ and for an uncomfortable moment I noticed the similarity between my symptoms and theirs, but of course I was far too young to get it. So, I shut the book and dismissed the idea, at least for a while’.
‘Between January and June 2000, I was still bothered by pain in my back and my stiff left arm. I arranged some physiotherapy near the college where I was working. At the first appointment the physio looked pensive and having manipulated me, she suggested I saw my GP and ask for a referral to see a consultant neurologist at the local hospital.
I did so, and the neurologist talked about chemical imbalances in my brain. He never mentioned the word Parkinson’s, but he asked me to come back for an MRI brain scan, which I did. I was not worried, but everything seemed a bit vague.
In August 2000, Briony received a letter from the hospital informing her that her brain scan was normal and asking her to make a second appointment with the consultant neurologist.
The appointment was just a formality and there was nothing to worry about, she told
herself. Briony comments: ‘I went alone to my consultation, I was called into the consultation room where I found a second doctor waiting there. She was not a student and I wondered why the consultant wanted a second opinion. We went outside the consulting room and he asked me to walk up and down the corridor. The two doctors nodded to each other and the other one disappeared. We returned to the consulting room where he talked about my neurotransmitters and basal ganglia. Then finally he mentioned PD ­ Parkinson’s Disease. The two words, which stuck in my brain were ‘progressive and incurable’. For a long moment I was stunned’.
At this point Briony explains, ‘I had so many questions that needed answering, but he couldn’t give me definitive answers. He then followed on with some reassurances saying that the progression would be slow and that I could continue my life without any major changes. Just as I was beginning to feel better, as we parted and shook hands, he said, ‘I’m sorry’. As those two words left his lips, that was it, I felt I was in deep trouble’.
There was no support mechanism, no specialist nurse and no signposting to a support group or community contact. She had been diagnosed with a ‘geriatric disease’. Once home, she telephoned her husband, who left work and came straight home. Both in shock, Briony and her Henry were lost for words.
What to do the internet? Receiving an unexpected and life­changing diagnosis can leave people extremely vulnerable, anxious, and reeling from what they have heard. Why me? What have I done to get this? What’s going to happen to me, to my family? How am I going to cope? The need for information and support is huge, but if the medical professional hasn’t directed them to further sources of information and/or support. The patient must seek out answers for themselves.
Briony did seek answers from the internet as she needed an eye on the future, ‘I have always been one to find the truth and to confront the horrors’. She asked the Internet the right questions based on what she had learnt from her consultant appointment. Reflecting on her research that afternoon, she decided she would deal with the condition, she would keep smiling, albeit with a stiff upper lip stance, she wouldn’t give in, ‘it was going to be a mind­over­ matter job’.
Breaking the news...there’s never a good way to voice bad news. An unexpected diagnosis is life changing and may be especially difficult to accept. Perhaps even more
difficult and challenging is finding the courage and words to explain the result and its potential effects to family and close friends. For all concerned, it’s unwelcome and crushing news that leaves people dealing with ‘shock and awe’, lost and trying desperately to comprehend what has been said. The change of demeanour is hugely noticeable, yet what follows next can be some of the most wonderful and amazingly human interactions, supportive words, deeds and selfless actions that melt away the ‘shock and awe’, replacing it with understanding, kindness, love and caring. However, be prepared for all responses as some could be negative or even offensive.
‘When my sons returned home from their holiday jobs that day for dinner’, Briony explains, ‘I blurted out my news and they were quite shocked. I played down the nasty bits and emphasised that it would be business as usual and domestic services would be resumed shortly, i.e. the dinner! Later that evening our daughter returned from her 22nd birthday celebrations. I watched her face fall as I told her the news, despite her shock, she was strong and supportive. How lucky was I to have a family who cared’.
‘I told my mother who lived 120 miles away and my brother with his family in the USA, it was quite a shock to them. My sister who lived nearby, coped better with the news. She had the capacity to turn any crisis into a comedy. An amputee since the age of 28, she had laughed her way through life and disability. She had survived and risen above this indignity and I wanted to be like her!’
‘It was shattering to be diagnosed with PD, I was in my forties with a job to hold down and children to support, but it should not have come as a complete surprise, because I had already experienced typical symptoms for years’. Slowness of movement and fumbling had become noticeable. Nodding off, sudden sleep attacks. My writing shrank in size, and it was an effort to write for any length of time without developing cramp (dystonia). Slowly and reluctantly, I came to accept these impairments as way a way of life’.
Briony didn’t choose Parkinson’s Disease or PD as she likes to call it. She says’, ‘there was no backing out’ or ‘taking a different route’, but I realised I could influence how I would travel forward with my PD. I could wallow in self­pity and enter the downward spiral of depression or I could pick up the pieces and attempt to continue life as usual. I chose the latter. I decided that PD might cramp my style, but it was not going to crush my spirit!’
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