Living with Parkinson

The decision to write about our experience was made with a view to give an understanding to the difficulties of diagnosis in the first instances of the insidious and frustrating disease. For some, the diagnosis itself can be a devastating sentence.For others, it may be a relief just knowing. Better the devil you know. But for all sufferers the diagnosis of the Parkinson symptoms will mean that life will different from this point on for sufferer and carer alike. but all is not lost, please read on ......

Our journey with Parkinson's began more than five years ago, Mary had gradually found her life becoming very confusing. In her own words, her head just never felt right. She felt unbalanced and exhibited worrying incidences of high blood pressure.  In the first instance we were referred to heart specialists with some weird and wonderful diagnosis'. But nothing seemed to alter the random nature of bouts of extreme high blood pressure. Various referrals to doctors resulted in disappointment as they each gave her a reasonably clean bill of health. We thought we had the answer on one occasion when a scan revealing partial arterial blockage to a kidney. This resulted in an operation to insert a arterial stent in the kidney but the operation was aborted when the blockage was found not to be severe enough. Mary began to feel that she might be a hypochondriac imagining conditions that triggered the unwellness.

Her quality of life continued to deteriorate  to the point that interest was being lost in her beloved grandchildren. She found it difficult to cope with even a casual visit, let alone the much anticipated sleep overs. Life was a constant struggle just to get out of bed in the mornings. She forced herself to continue to manage the household and cook for us both. The medical advice received was that she must exercise and continue to walk. I watched helplessly as she struggled more and more to walk and then she began to fade away both physically and emotionally as I feared she was about to give up.

Walking for Mary had never been a problem, in fact for much of her life she ran everywhere. Mary has always been very athletic, as a schoolgirl she excelled as a runner and later as a keen hockey player. As recently as 2000 she was chosen to run a section of the Olympic Torch Relay. This was a highlight of her life and she trained daily, and then on the day ran the whole distance. She later told me " I felt like I was running on air, and could have just kept running and running." Forrest Gump immediately came to mind and I was exhausted at the prospect. But that was then,  now I was coming to terms with the fact that this vital, beautiful lady who I had chosen to spend the rest of my life with and loved very much, was fading away and would be gone from me unless we could find answers soon.

On more occasions than I care to remember over a five year period, 000 calls were made for assistance when blood pressure readings exceeded 200/140. We came to respect and value the work of our local ambulance officers as they responded on each occasion with skill, patience and compassion. What a wonderful resource our ambulance service is, particularly for country people who are often remote from hospital or medical care. These calls often made in the dead of night resulted in a trip to the local hospital where monitoring took place until the blood pressure subsided and then she would be released with a new set of recommendations. The final straw came in 2005 when following a severe bout of high blood pressure and an ambulance trip to hospital, the duty doctor called me aside and at 3am in the morning told me that my non-drinking wife must give up the drinking or it will kill her! If this was the best diagnosis we can expect, then we both knew we were in trouble. Words of one of the ambulance officer continued to ring in both our ears ...  "I think Mary might have some sort of chemical imbalance in her body, have you had that checked?" Well we had been to every sort of specialist we could think of but it never occurred to ask to see a neurologist.

A few days later we arrived at the neurologists consulting rooms in Canberra. Mary was too ill to wait in the waiting room so I asked that the nurse tell me when her turn was due and I would walk her in to see the doctor. We were seen immediately and as she slowly shuffled past the waiting doctor he pronounced "well my dear I know what you have .. you have severe Parkinsons disease, and the good news is we can do something about it". Not in our wildest dreams did we think such a diagnosis would be a welcome relief. But it was. Now we knew what we were up against. It was as if a great weight had been lifted from our shoulders. In due time Mary would come to terms with the reality of the non-reversible diagnosis of an insidious disease that at this time has no cure. Living with a Parkinson's sufferer has given me the opportunity to look beyond the physical symptoms of the disease. The shaking, tremors, mobility and speech difficulties are some of the physical manifestations seen by the observer, but like the iceberg these are but the proverbial tip, for underneath lie a depth of unseen symptoms, a constant dizziness, lack of body temperature control, frustration, confusion and sometimes depression that only the sufferer understands.

That was 2007,  medication now modifies her symptoms to the degree that her most recent visit resulted in the full restoration of her unrestricted drivers license and an annual appointment for the next check up. She still experiences some of the unseen symptoms daily but her grandchildren have resumed the important role for which they were ordained and she once again can view life with optimism.

 The general practitioner does not always exhibit a full understanding of Parkinson's Disease and its effect upon the lives of the sufferers. No person understands the disease better than the sufferer, and the collective experiences of an enthusiastic support group has been for us a most valuable and rewarding experience.  The Bega Valley Bunch. is an enthusiastic and optimistic gathering of Parkinson's sufferers and their careers. The friendships formed and the sharing of experiences has given us a realisation that we are not alone in our struggle. Mary still has Parkinson's and will have it for the foreseeable future. We do not know what the future holds for its progression, but we do know that there are resources, treatments, friends and loved ones who will make the journey possible.

Dad hits the slopes

My dad was a competitive cyclist in his younger years but when he became storekeeper/family man he did not seem to have time for outside sporting interests. He was introduced to skiing in middle age by our association with the Lofts family and he came to love it in a very elementary sense. The whole family would wake early on Sunday morning, leave home before daybreak, travel three to four hours to the snow, ski all day then drive back home to Cobargo arriving around ten in the evening. These were the days when much of the trip was by winding dusty dirt road with the accompanying inconvenience of travel sickness for some. But even this was small sacrifice for the thrills of the snow. The only occasions I recall my dad holidaying without Mum was for our annual pilgrimages to the Smiggins car park with the old caravan in tow. They were some of the best times spent with my dad.

Home-made snow skis

The sport of skiing was in it's infancy in 1956 and was generally considered a sport that required considerable financial support. The hiring of ski gear and accommodation in the snowfield was limited and expensive. As a consequence we made the decision to purchase our own. A hooded shower proof, down filled parka, together with stretch ski pants that were moisture repellent and ski boots, goggles, gloves and woolen socks took care of the slopes fashion requirement.

My first pair of skis were home-made and constructed as a school project. This was the idea of my inspirational geography teacher, Greg Lofts. The skis were constructed from ash timber, placed in a press and kiln-steamed to set the required bow. Many hours were spent with a spoke-shave shaping the planks to just right thickness and shape. Then when completed the sides were rebated and steel edges screwed in for the length of the ski. Finally a special formulated paint was applied to the bottom of the plank to take the application of ski wax. This provided the ski a most efficient resistant-free run on the snow.  Ski length was determined by standing by the ski, raising one arm and fitting the tip of the ski into the palm of the up-stretched arm.

Smiggins Caravan Park

Smiggins Hole 1956

I was sixteen at the time and a keen skier. The two caravans in the photo were those of my parents and school friend Barry Lofts' family. The vans were parked in the public park adjacent to the Smiggin Holes Cafe. For the next two weeks we skied our hearts out. We were able to do this unofficially of course, for about three years before a ranger type person told my dad it was not on! Imagine trying to do that  in 2011.

I recall the first ski tow I experienced here at Smiggins. It was a rope tow operated by the mountain tourist pioneer, Johnny Abbottsmith who at the time operated the Smiggins Cafe. The tow consisted of an endless rope that ran around pulleys at each end, driven by a temperamental motor cycle engine. 

The idea was for the skier to take hold of the moving rope and hold tight as the rope pulled its load to the top of the hill. During particularly cold weather gloves sometimes froze to the rope during the upward journey and it took some very smart handiwork to slip the hand from the glove before it reached the return pulley and then retrieve the empty glove as it began its downward journey.
Whilst it was not the first ski tow in the mountains, it was my first ski tow, and affordable at five shillings for the day. The others were too expensive for the likes of us. Skiing was just catching on having been made popular by migrants who worked on the snowy scheme. many of these people were of European extraction and were excellent skiers and I suspect were the nucleus of the early Australian ski instructors. 

As our skill level improved and we progressed from stem turn, to parallel christie and began cross country skiing, we at the same progressed to the poma lift and T bars and eventually the chairlift at Perisher. Those were the days ......