Counting our Blessings : Living with Parkinson's Disease

This is not really a genealogy blog about ancestors; It is about the life my husband and I have lived over the past years and will serve as a story for generations to come. 

A few months ago, I was approached by Parkinson's Victoria, wanting to know if I would be willing to be interviewed for an article, describing life as a carer for someone who has had PD for 25 years. The article is to be used as part of Parkinson's Victoria's Christmas Appeal, 2011. This morning, without notice, I received the actual copy, sent to all Parkinson's Victoria members. It was a slight shock, to see your words on such a personal matter in print.

I was interviewed by a wonderful lady named Indira Kennedy. A half hour interview turned into a two hour chat. I described the problems we have faced, warts and all, and she came up with a wonderfully sensitive take on the difficulties we face on a daily basis. I have added some details to round out the story in italicized type.

Here is how she worked a terrible tale into a blessed life:

Counting Our Blessings

I may not have the man I married but I do have much to be grateful for

Living with Parkinson’s takes courage and strength, dedication and patience. It can also take the things you love - if you let it.

My husband Paul has lived with this challenging illness for over 25 years. He was only 30 years old when he was diagnosed, but probably had developed the disease a few years prior to diagnosis. It was so early in life and such early days in understanding how to manage it and live well with an ‘older person’s disease’.

I met Paul as a father of two girls. I have three boys. My own health is challenging, having a mental illness and rheumatoid arthritis as well as back problems,  and sometimes I wonder who is looking after whom! Between us, as a second marriage for both, you could say we had a lot on our plate.

At first Parkinson’s wasn’t so noticeable. Paul had a lot of coping skills and hid the symptoms well. As a scientist he knows everything there is to know about the physiology of disease. Paul was a senior research scientist at CSIRO for 22 years, specializing in Molecular Biology. He also won many awards including the prestigious "Chairman's Medal". He loves history and immersed himself in the thousands of books lining our home; Seriously!. He has an amazing sense of humour and a wonderful way with language. But at an emotional level, it’s another thing altogether.

You could say Paul doesn’t want to know, to face up to what has gradually taken so much of him. But what I have learned is that Paul hates confrontations, always looks for peace and doesn’t allow his condition to rob him of his good nature.

At Cross Country, Benalla

For example, Paul was fabulous with the children when they were young. He took them to Little Athletics every Saturday during summer, and cross country during winter, despite his condition. When he could no longer drive, he took a taxi. He quietly soldiered on.

As for me, I have learned to express the emotion for both of us. I know what it is to go through the stages of grief, having lost both my parents around the same time Paul's health began to worsen, to feel robbed of the spritely man I married, to have our children struggle to confront the reality of a dad who was ill.

Many times I have fallen into total exasperation, burdened by the dependency on me. At times it was like looking after my father in the last months of his life - Paul had become an "old man". Sometimes it feels like I’m flying blind dealing with how Paul is feeling or what he needs to be comfortable. I’ve come home to find him frozen in muscle spasms on the floor, or in the full throes of tremors. I had to give up work, in 2008 just as he did, aged 49 two years previously, to try to live better with the progression of this demanding disease. 

My saving grace was contacting Parkinson’s Victoria when I just didn’t know how to go on. Their useful tips about simple things like shirts with press studs, tracksuits with no elastic in the ankles, slip on shoes, all gave me a new view of daily life. Getting dressed and doing up buttons on a shirt or tying shoelaces was beginning to take half an hour for each task, so I was dressing him, an embarrassing proposition for a man in his prime!

But more importantly, I learned what side effects to expect from the many drugs Paul needed to control his spasms, to know what stages to expect as the disease took its path, got referrals to other services, and I learnt what our options were. One of those options was a change in his drug regime which  included a 24 hour infusion pump of the dopamine agonist of Apomine, changed daily, until there was nowhere to put the butterfly needle as he was so skinny, and finally, Deep Brain Stimulation in May of 2010. Note: The solutions that suited Paul are not for everyone. Please talk to your neurologist!

Infusion pump and needle

Even more so, I was grateful to have a time to cry and let go when no-one else could truly understand. I’ve needed to speak up and have someone support us. Parkinson’s Victoria got us on the right track when another track wasn’t working. They referred us to the right agencies who arranged for easy access to the bathroom and install hand rails, and find respite care. They helped us to bring the whole emotional experience into one that became, ‘This is how it goes.’ I learned to accept and keep fighting on.

Charging across a Southern US battle field

We travelled to America for three months, driving 2500 miles, mainly looking at Civil war sites in the Southern states - one of his passions while it was possible, and had the trip of a lifetime together. And we can still holiday in places where we are still able to meet Paul’s needs.

These days Paul snoozes a lot during the day, and seems slower. But his mind is just as sharp and his love is just as powerful.

Thankfully, Parkinson’s will not shorten Paul’s life - he can expect to live as long as any average Australian male. But Parkinson’s will continue to challenge us, and sometimes in unpleasant ways. We will still need Parkinson’s Victoria to help us, every step of the way.

There is no doubt Parkinson’s has changed Paul a lot. I might not have the man I married, but I do have the man who in his own way keeps on fighting alongside me, in the best way he knows how. And we constantly count our blessings.

Everyone has their own story, and their own journey. Parkinson’s Victoria remains dedicated to taking those steps with us all.

Please give generously to this appeal. We know, as most likely you do, the incredible difference this service makes to so many lives.

Thank you and please have a safe and joyful festive season.

Linda

The Death of William Smith : A PITIFUL STORY

William Smith, my paternal Great Grandfather born in 1854, was the son of Owen Smith and Christiana Matheson (from the Isle of Skye). Owen disappeared from the records, however in 1857, Christiana went on to marry Jabez Smith, a shepard then later a store-keeper on the station "Boorolong" near Armidale.  Jabez and Christiana had three children, Eliza and Catherine - twin girls, born in 1858 and Charles born 1860 . 

Jabez wrote his will in 1885, and died in 1888. His will states that "My stepson William to have all my horses and 1 dray & harness". The probate papers for Jabez' will describes these items as " 1 harness (old) worth £1, 10/- and 1 dray (old) worth £6". When in total his whole estate was valued at probate for just under £1000; it seems step-sons were not very important in the scheme of things.

In 1881 William married Agnes Jane Johnson. I do not know why William and his family left  the thriving Boorolong station, and moved to such a remote area. I might assume that he was no longer welcome at Boorolong after the death of his mother in 1894 and perhaps  they thought he might "Make his Fortune"  carting goods to the miners whom had flocked to the area  because of the gold rush that was happening along Swamp Oak Creek during that time, but those reasons are now lost to time. Together William and Agnes Jane had 4 sons and 4 daughters; William Thomas; Ernest Jabez; Albert James; Henry Owen; Eliza Pearl; Janet Christina; Ethel May; and Vida F. Smith

However in 1895 tragedy struck. I was recently reading a book called Three of a kind : a history of Niangla, Weabonga & Ingelba by Claire Brazel et al. There was no mention of the Smith family in the index, although, from NSW death certificates held by me, I already knew that William had died at "Swamp Oak" - later renamed Weabonga in 1917. I was casually reading some of the small inserts of newspaper clippings that illustrate chapters in this book, when I was came across this passage on page 161 which rocked me to my core:

A PITIFUL STORY:- A sad story of destitution reaches us from Swamp Oak (writes the Walcha “Witness”) A Mr [William] Smith, a carter by occupation, has been living with his wife [Agnes Jane Johnson] and family near the school there. One boy got injured and was taken to Tamworth Hospital with a broken leg. From inquiries made by Constable Payne it appears the rest of the family were sleeping in the house without one blanket between them. Sickness set in, in the shape of inflammation of the lungs. The residents of Swamp Oak subscribed a little money and sent the father to Tamworth for medical advice. He reached Tamworth, but appears to have got no advice and no medicine for the children. On his return, although he did not complain, it was noticed that he was bad. Now the father and two boys have died, and the mother and remaining two [four] children are in a bad state. Constable Payne came into the town – having ridden through from Tamworth and made arrangements for the admission of the mother and two children to the Walcha Hospital. Mr W. Moore has gone out for them.

Tamworth Observer, 24th August 1895

This trip, done either on horseback, by dray or by foot would have been no mean feat. The distance between Weabonga and Tamworth is about 45.5 miles, and the terrain is steep  and wild and the tracks at that time, rough.

from Google Maps 2011

I had previously found a plaque inscribed with the name  "W. Smith and his two sons" from  their burial place at the Weabonga Cemetery, with only minimal details listed. I wrote to the Tamworth Historical Society filling them in with the missing details and asked if they had any information regarding an outbreak of diphtheria  - the offical cause of death given on  the NSW Death certifcates of William and his two sons, Henry Owen  (aged 10) and Albert James (aged 6) - in the area during July and August (the months of their death) of 1895, but they could not give me any answer.
 

Weabonga Cemetery plaque - from Australian Cemeteries Index

Information on Diphtheria:

"Diphtheria is an infectious disease which primarily affects the mucous membranes of the respiratory tract (respiratory diphtheria).

Throughout history, diphtheria was a leading cause of death among children, and it was once referred to as the "strangling angel of children." The diphtheria bacterium was first identified in the 1880s. In the 1890s, the antitoxin against diphtheria was developed, with the first vaccine being developed in the 1920s.

The signs and symptoms of respiratory diphtheria are caused by the bacterium's ability to cause a localized inflammatory reaction of the cells lining the upper respiratory tract. In certain cases, the disease can become more severe and widespread, and it can involve other organs of the body as well. 

Diphtheria is transmitted to close contacts via airborne respiratory droplets. Overcrowding and poor living conditions can further contribute to the spread of diphtheria."

Family lore always had William and the two children dying, after his horse and dray were  broken up and washed away while trying to cross a flooded and swollen creek.

It is a story worthy of more investigation, but no matter what the circumstances, the idea of my Great Grandparents and their children "living without a blanket between them" will always send a shiver down my spine.

Sources: 

NSW BDM Certificates
Australian Cemeteries Index
Three of a kind : a history of Niangla, Weabonga & Ingelba / Claire Brazel et al, 1991
Google Maps 
MedicineNet.com

Arthur Roberts : From Boyhood to Fatherhood : The Making of a Good Man

The Life and Times of Arthur Thomas Herbert Roberts, as told by his daughter Marjorie Roberts : edited by his Granddaughter, Linda Smith.

Arthur Thomas Herbert Roberts, as he always called himself, on official occasions or Arthur, on formal occasions and Artie to friends, was born on the 21^st of January 1898, at his parent’s home in Riley Street, Surry Hills; an inner city suburb of Sydney, which at that time was well known as a slum area. A good description of the area and times can be found in the novels “The Harp in the South” and a “Poor Man’s Orange” by Ruth Park.

He was the 2^nd eldest of eight children born to Thomas Roberts and Elizabeth Olive Dillon. The grandparents of both his parents were convicts, sent from Britain to New South Wales between 1830 and 1850. John Roberts and Sophia Chapman were his paternal Great grandparents, while his maternal Great Grandparents were Olive King and James Lefroy. Arthur's eldest sibling, Olive was born in Surry Hills in 1896, while his youngest, Mavis, was born in 1914 at their new home "Olveena" in Austral Street, Long Bay, where she lived the whole 91 years of her life.

As a child he used to walk the 8 miles out to Long Bay with his father Thomas, to visit his aunt, Hannah Roberts, his father’s sister. Hannah had married Lawrence better known as “Larry” Burns in 1896, and had moved to Long Bay around 1900. In 1910 Arthur’s family also decided to move from the inner city to the almost unknown suburb of Long Bay, with its fresh air, clean drinking water, seaside and space. Long Bay had been “settled”  less than 25 years earlier. But for many thousands of years had been home to the local Aboriginal people, many who still resided there, while the newcomers built around them.

ATH Roberts, 1915

By this time, at the age of 12, Arthur had finished his schooling, eventually training as a tinsmith, making travelling trunks.

At the age of 17 and 10 months, on the 8^th of November 1915, he joined the Australian Imperial Force and was enlisted into the 2^nd battalion. 

Records show that he lied about his age, which is listed as being 18 years and 9 months. The Army records also show that he was 5’ 2” and weighed 8 stone, 3 pounds, when he left Australia on the 12 December from Sydney, New South Wales, on board HMAT Berrima. 

  

HMAT Berrima

After stopping over in Alexandria, he arrived in Marseilles, France in March of 1916, and by late July 1916, was wounded in a battle at Pozieres, when  up on a church wall, a shell exploded and a piece of shrapnel was lodged in his temple. Athur was one of only a handful of men to survive such an injury, but he always claimed that he survived because he was ordered to walk from the front line to find medical assistance, as the battalion was in retreat.  In his words, “the circulation from walking helped me survive”. He was eventually sent to the Third West General Hospital near Cardiff, Wales in August of 1916 for recovery, but by October of 1917, he was back in France. Put on cooking duties, he spilt a large pot of boiling water on his right arm, and was again sent for medical treatment.

He returned to Australia on His Majesty’s Troop Ship, “City of Poona”; leaving Southampton in England on the 28^th March 1919, and arriving in Melbourne in Victoria on the 14^th May 1919, from where he had to make his way home to Sydney by train; a distance of some 600 miles.

On his return home, he was presented with a special 9 carat gold medal inscribed “Pres TO, A.T.H. Roberts, from his friends A. & AE SUMNER, on his return from the, GREAT WAR, 17. 5. 19”  ; Mr Sumner being another well known and respected local resident

Once home, even the peaceful, sleepy suburb of Long Bay could not settle his nerves. He left Sydney and “went bush” down the south coast of New South Wales near Shoalhaven, staying away for four years. On his return home around 1923, he bought a horse and cart and went around the local area selling fruit and vegetables, many of which he bought from the local Chinese market gardeners at Matraville. When a green grocer’s shop opened in Long Bay, it was Arthur who supplied them with their produce.

In 1924 he bought a Ford truck to carry on his old business more effectively. In the year before he passed away, John Anderson, a pioneer of Long Bay who had had a long running carting business, sold it to Arthur, whom he thought was a dependable character, thus the truck was named "Dependable". The goods Arthur now carted included Coal, coke and wood which households burnt for heating and cooking, and ice to keep food cold, as electricity was connected to only a very few of the houses in the area, and refrigerators were not yet on the market; it took his wife Doris until the 1970's to give up her “Ice Chest” for such a new and in her opinion, useless Electric Refrigerator!

 

Newly weds, Arthur and Doris,
leaving All Souls Church

1924 was an eventful year for Arthur, as he also met his future wife, Doris Louisa Morgan, at one of the many dances that were regularly held at Anderson's Hall in Victoria St. In June 1926, they were married at All Souls Church of England in Petersham, back near where they had both been born.

Arthur and Doris in their new home

The newlyweds rented a cottage named “Longhaven” in Prince Edward St. Their first daughter, Doreen Lorraine was born in 1927. Business remained promising, and Arthur bought a number of housing blocks to ensure his family’s future. 

When in 1929, the world was hit by an economic depression, Arthur continued to give service to clients even if they could not pay. The couple began to argue, as Doris believed that many families whom had pleaded poor, could in reality, afford to pay as many husbands worked on the quite or QT as it is said in Australian slang, while her family went without. Arthur however, kept up his charitable attitudes by giving a lift to men he saw walking to Moore Park for food handouts, even though he could barely afford the petrol. He continued to struggle economically, and the blocks of land he had purchased against such an eventuality had to be sold. He would never consider signing up for “The Dole” nor accept handouts himself, but continued to struggle financially, while maintaining his compassionate work. However, soon all his assets were gone and he was left with nothing. 

Long Bay Fire Station, Raglan St., Malabar

In 1929 Arthur became a notable member of the local Volunteer Fire Brigade, located in Raglan St, opposite to where he lived with his new family. Arthur was an active member until 1965, just over 35 years, being given lifelong membership and a medal for long and outstanding service.

Arthur was also a founding member of the “Long Bay Social Club”, set up to assist, and provide sustenance and entertainment for those unfortunates who had settled at Long Bay after losing their livelihoods, homes and sometimes families during the "Great Depression"

By this time, Arthur and Doris had another daughter to feed; Beverley Frances born in late 1928. Doris had also had stillborn child during this period, and the family must have been in turmoil. His health began to suffer, and on doctor’s orders, he moved with his family to Shoalhaven Heads; his old stomping grounds of the South coast of NSW. The family lived in the back of his truck until he found somewhere to rent.

Baby Beverley being Bathed

After six months respite, he returned to Malabar renting a house in Raglan Street, while building a new house for his family, next to his parent’s home in Austral St. Many friends aided him in his building work; the blueprints of which were donated to, and are now held by the Randwick  and District Historical Society. 

One boon for this period was the wreck of the ship "The Malabar" in 1931. Despite the official efforts in trying to stop the public taking home the the cargo that had washed ashore, or floated in the bay, the temptation was too much for many Long Bay residents; with barrels of butter, nails, wood and many more useful and even life-saving items being there for the taking. Items were hidden when Custom's Officers came to investigate the missing cargo. The SS Malabar contributed to the suburb in one more very important way, and that was its name; In 1933, Long Bay was officially renamed "Malabar"

Life went on relatively smoothly, for Arthur and Doris, though busy working, dancing and raising three daughters; Marjorie had been born in 1933. The beginning of World War II began to impose hardship on the population once more. Being good at his business served him well, and he soon gained employment with the Royal Australian Naval Dockyards as a carrier of goods. Many of the invoices from this period show that he was indeed a very busy man. He continued his work with the dockyards until 1954; well after the war had ended.

Dances were an integral part of their lives as well as other social activities like organising cricket matches between the warders of Long Bay and Emu Plains Prisons. All the players would load themselves on the back of "Dependable" and Arthur would drive the many miles out past Penrith for the game

Arthur, along with his father and other family members was a member of the Long Bay Masonic Lodge which is still operating strongly today

Arthur passed away in 1985, aged 87, with 8 grandchildren, and 15 great grandchildren, loved by all, he was not just a family man, but an integral part of the whole community

Arthur and Doris with Great Grandson, Patrick, 1981

 

Sources: 
National Archives of Australia, WWI personnel record 
Family papers, diaries and photographs
NSW Registry for Births, Deaths and Marriages  
Archives of NSW photos on Flicka and the National Library of Australia
Notes taken by his daughter, Marjorie Roberts from talking to her father
Australian Electoral Rolls
Randwick : a social history