I married a Kiwi six months before going on the big Overseas Excursion. I married and then joined a shearing gang, with my husband Martin shearing, and myself as shed hand or cook. This was an experience that made me grow up fast as well as learn how to work hard. It was also a good way to make big money, working every day of the week for three months with only the very occasional wet day off. Although we worked hard, we also played hard. Our honeymoon was shearing in Gore. I was then 20 years old and 2I when I was pregnant.
We rented a farm cottage off an old neighbour when we came home, for the first year, east of Wellsford before buying our first small farm nearer to Mangawhai. We were rearing sheep and cattle and were shearing and fencing around the area, which is almost certainly the reason why my baby was stillborn. My baby was born at National Women's Hospital.
Hamish was born a year later in I973. When it seemed was going to lose him, I was put in hospital where I couldn't feed calves, or work.
We bought our second farm at Mangawhai probably about I978. As well as working full time on the farm, I taught remedial reading and a bit of teacher relieving in Hamish's class. Bianca was born in I975, only I6 months after Hamish. The children were both born while I lived on the first farm.
I became aware that something was wrong when I would have been about 30 years old. I got really tired and then I had trouble with my fingers, but only at night. There was nothing obviously wrong with them except they didn't do the same finger movements. I thought I must be getting older and I would have to slow down. I worked really hard, physically, on the farm while at the same time developing another new garden on a near impossible site, which required long hours. Also, because I had no physical limitations such as bad back or headaches, I was able to work until I dropped so the process was very gradual.
Prior to being diagnosed with MND one of my concerns was that we used a lot of sprays, both on the farm and in the garden. I was an avid gardener, going overboard as is my way. When I was diagnosed, I asked them to check my blood. They did that every day for about two weeks. No traces of chemical poisoning were found. I went to a Doctor when things people were asking me to do became difficult. I was dropping everything. Someone suggested that maybe I had arthritis. At that time there was nothing wrong with my legs. Nothing else was a problem, only one hand and then only the fingers. I began to think I did have something wrong although I didn't know what it was. It made me pretty frustrated.
My first medical contact was with the local GP. By the time I went, it was obvious something was wrong. He told me that often middle-aged women retained excess fluid and that does something to the tendons. I was only 3I. He said I would have to have an operation if the pills didn't work, but I knew that I didn't have any excess fluid. I have the skinniest wrist of anyone who ever lived. I wasn't in any hurry to go back to the Doctor. I took the pills to start off with but they made no difference.
The children were young at this time. Hamish may have been 6 and Bianca 5. Martin noticed something was wrong and was supportive at this stage. I couldn't do the housework and washing so Martin's sister came to live with us and she was just wonderful. She did all the things I was struggling with, like hanging out washing and doing vegetables. I continued to work on the farm and I drove for several years. Janie, Martin's sister, did all the difficult stuff for me. I was really lucky. So, too, was Martin pretty lucky. He was able to carry on with only a few minor changes to his everyday life allowing him a couple of years to ease in to the changes ahead of him.
I was still tired but I never thought that I was having serious trouble with my hands because it was at night and I had been fine in the day. I just got grumpy. I have learned a bit of self-discipline since then. At this stage I wasn't anxious about what was happening to me.
I gradually got worse, but very slowly. I had trouble locking the car, starting it, opening the door, doing up buttons and tying shoelaces, all the little things that one does. I was also having trouble during the day, not being able to do everything. But because it was so gradual, I was unaware of the progression. I really never noticed and with Janie living with us to help with the every day chores, it was no big deal.
Then I went to another local Doctor who was no better than the first, a doddery old fool. He said that my hand was really cold and that I must have poor circulation so he gave me some more pills. I have a lot of trouble with medication because of palpitations and these pills really threw me. I wasn't on them for long and by this stage I was pretty grumpy with doctors and rather strongly conveyed this message to the third Doctor when I went back. I demanded he send me to a Neurologist rather than put me on another lot of drugs which would probably knock me off this time round! This Doctor had no idea so he arranged (because I wasn't leaving till he did) for me to see a Neurologist in Auckland who had an idea what was wrong but wasn't prepared to enlighten me until after he had conducted the necessary tests. It was two months before I went into hospital and they did a whole lot of tests.
I was in hospital for two weeks. My hands were all shriveled up and I was also having muscle twitching all over. It was very obvious. I felt no different but I wished I could die right then. I even had a lumbar puncture, which was very painful. Every time I moved my head I vomited. After a week of this they came round and told me I had MND (Motor Neurone Disease). In October I982 when I was diagnosed, I had never heard of MND/ALS and apart from the basic facts, which was almost nothing, I had no idea what it was. It was a difficult time for both Martin and I to come to terms with it.
I told the kids as soon as I got home from hospital. They knew something was wrong with me and I am of the opinion that certainty is far better than uncertainty. In fact it was a relief to know what it was. I don't believe in hiding the truth from anyone, particularly my kids. Besides, if they're old enough to understand, then they're old enough to know the score. Life is all about death and it's always going to have problems along the way.
I thought I was only one of a dozen people in NZ to have MND and as I was told I could expect to live two years, we decided to take six months holiday as a family in the States. All the locals were really good; they even raised the money for us to go away. We took the kids out of school for six months at the beginning of I983.
Before we left a friend gave us a brochure that his Doctor had given him when he had asked what MND was. My Doctor had no idea. On the brochure it was called ALS. It sounded the same as what I had, but I wasn't sure. We went to Hawaii, then on to Los Angeles where we rented a campervan and travelled all around the South over to the Mid West. That was the very first time I met someone with MND and also the reason I went to Kansas. We called a number on the brochure and met Judy and Peter Oliver. In fact we stayed with them for about a week during which time we found out that they had a support group for MND/ALS locally as well as a National Association. There was so much that they did for each other. I found that MND/ALS were one and the same as well as everything about it, and at the same time, the importance of support groups. MND can start in one of three ways, the feet, the hands or mouth (I don't know how). Pete was about 40 years old and had been an airline pilot. He was diagnosed about a year before me and had it in his legs.
Coincidentally, we met the President of the MND/ALS Society of America, Ames Bishop, at a meeting in Salt Lake City, Utah, while staying with a very good friend who now lives in Dunedin. He was so disgusted with the attitude of the medical profession here that he advised me to seek a second opinion from a very good Research Neurologist in San Francisco, which I did. Mr. Bishop also urged me to start up a support group in NZ as it was desperately needed and gave me support group contacts in Victoria and Queensland, Australia.
Victoria, Australia, put me in touch with patients in Timaru and Christchurch Another MND/ALS woman from North Shore, Auckland, contacted me soon after we had organized the "World's Largest Garage Sale". We raised with the support of locals and family, $I0, 000. She had heard that I wanted to set up a support group and that was the birth of support groups in NZ. It continued to grow in Auckland, with information and support now extending throughout the North Island. We have a group in Whangarei, where I am, in Wellington and Auckland as well as contacts in the South Island. I am now a delegate for the National Council in Wellington.
But I have diverged a little! When we returned home from our trip overseas, not a lot was happening to me. Jane, Martin's sister, left soon after. I tried to see a Neurologist for another EMG test at Auckland Hospital because the IVINDIALS Specialist I saw in the States had advised me that the first test had been conducted when I was cold and therefore the result was inaccurate. However, I never received the result from this test despite efforts to obtain it.
Later I had difficulties obtaining help in the running of our home. With two young children, and a new home in the country, our lives changed dramatically. I had worked full time on our farm, which we were developing with a large mortgage and no money. Now I was struggling with the running of the home, as it was my hand and arm that were affected first. I think someone in the community must have talked to the right people, because at the time I began falling over, I was given ten hours home help a week.
Because we were well known and involved in the community, we were well supported in this way. I taught my then 8 and 9 year old children the run of the home and garden so Martin could work on the farm. This was not a bad thing. I had my two Moms' support as well as neighbours and numerous friends to assist and encourage the children.
The farm was the problem, particularly as I required more personal help. Farmers didn't qualify for sickness benefits or the like. This was, perhaps, more due to an attitude among Government Agencies than to Government policy. Our farm went backwards, along with our income, and our expenses multiplied along with my increased needs. I didn't want Martin to sell or cease farming because that was all he was qualified for.
He resented the forced nursing he was now thrust into and limited time in which to manage his pride and joy, the farm. He sought the comfort of other women because he couldn't see any way out of the situation. He was still young and vital and could see life passing him by.
My daughter came home from Primary school one day to find me in a heap at the bottom of the stairs. She had to lift me up, help me up the stairs, clean up the blood, then warm me up as I had been there an hour and was now in shock. This continued to happen for four years or so, often several times a day. My children were incredibly strong physically but the emotional strain became too great and they volunteered to take me on full time because they no longer wanted the added burden of their father. This happened in their last year at school, by which time we had no paid help because I hadn't replaced the woman we had had three months previously because of the affair she was having with Martin.
Hamish had two terms left to sit Bursary, and then he wanted to go on to Art School in Auckland. Bianca had been accepted by the AFS to go to Brazil the following year, so she was striving to gain top marks in 6th form to go on to University on her return from Brazil.
Had we had more Government help back then for us as a family, perhaps this situation would never have happened. There was no help at all when Martin left in May. After the holidays, my Mom came when the children weren't able to stay home. Martin's Mom relieved them one day a week as I was in need of full time help. For the past three years I had become incontinent, urinary-wise, and if I wasn't toileted would often need a change. There was generally someone to fill in until after the children came home from school. I had notified the Multiple Sclerosis Society that Martin was leaving in two weeks and I think they were responsible for Rodney Home Help being brought in. Within two weeks I5 hours help had been allocated which helped relieve my poor mother a little as she was also nursing my Dad who had Parkinson's Disease.
I got off to a bad start with Rodney Home Care and my home help was later reduced to I3 hours. My Mom and sister in law encountered the same attitude when we approached Income Support, Orewa, and a Social Worker at North Shore Hospital. Because I had a farm, it was suggested that I sell it and put myself in a home. I then had to establish whether I was in the Auckland area or Northland. Eventually I obtained, after much battle, Northland District Nursing Help three days a week. She was basically a neighbour while the Auckland District Nurse was 45 minutes away. This lack of area definition posed constant trauma every time I dealt with any Government Agency, which was too often..
Because I had very little Government help, the community realized that both my Mom and children required more help. They organized a roster of helpers to make up the hours between the paid help leaving and the time when the children returned from school. My Mom did one full day, my Mom in law did another, and the children did weekends and holidays. The strain on them was immense. For the first time, ever, there was dissension between them resulting in Hamish moving out for two days at the end of the school year before reconsidering his stance.
When Martin left I had to transfer power of attorney from him to my Mom and I organized for my friend and neighbour to sign cheques for me. I was lucky in that I had such great friends and family whom I could rely upon. Esther, my Accountant, would organize one or two days a month in which to help with the farm and personal accounts.
At this time we were also considering what we would do when Hamish went to school in Auckland and Bianca left to go to Brazil. Bianca would have foregone her year in Brazil to care for me if necessary but two weeks before her departure date, the MS Field Officer saved us yet again. Under the Domiciliary Care for families, everything was organized for me to have live-in care and Bianca was able to help this person adapt to the requirements of the job.
Up until this time I had received no advice, much less help, from Government Agencies. The job was full time with payment little over that of the dole. Rodney Home Care withdrew their hard-won hours now that I had a live in helper. Fortunately, my brother and his family moved to the area from Auckland at the end of the year in order to help us. But even then, it soon became obvious that this was not enough help, so Lynn (my sister in law) approached Rodney Home Care. After great resistance because she was family, they finally paid her to do five hours a week. It wasn't a career and after sacrificing eight months, we had the task of advertising for another minder. This was not easy and we were not so lucky with the next minder. Lynn rescued me again and the next minder, Barbara, realized the complexities of such a job and coaxed Rodney Home Care into providing another five hours. This was still horribly inadequate so Barbara, Lynn and I, approached Whangarei Income Support in the hope that we could increase the hours.
However, we discovered that Government policy needed to be changed. We wrote to relevant people in Government without success. In the meantime, Barbara left and I lived with Lynn's family until a young friend and earlier helper, Cathy, returned from overseas to take a turn at minding me. With assistance from Lynn and Michael, I wrote to everyone I could to seek help and after exhausting every avenue, eventually went public.
We were featured on the Paul Holmes Show twice. That, along with the support of MND/ALS Society, MS Society, friends, family and Doctors, Government conceded 40 hours home help for people like myself reliant on Domiciliary Care. This worked adequately provided one was able to find a Domiciliary Care person.
It was at this point in time that we changed from Rodney Home Care Support to Northland WDFF (Women's Division of Federated Farmers). Obtaining Domiciliary Care was difficult because it was a “commitment of self sacrifice”.. Conditions of employment also posed problems. The only suitable applicant was a Swiss girl but because she was not a NZ beneficiary, Income Support was unable to place her on Domiciliary Care. The fact that no New Zealander would undertake the job was irrelevant.
This occurred just after I had moved. Lynn had helped me with selling the farm, which I had subdivided into three lifestyle blocks to maximize my returns and make it easier to sell. It was basically uneconomic and I was tired of relying entirely on Government help, Lynn, family and friends for my well-being. My house was falling down around my ears, the garden had over grown everywhere, and everything required much time and money. I had two children at University always needing money. I wanted to live better than just making do as I had been doing. Subdividing the farm had been a major task and Lynn said she didn't have the strength to lobby the Government any more.
I no longer had Domiciliary Care. Towards the end of Hamish's final year, he moved home full time to care for me, with breaks from Lynn, my other brother and his wife, and a friend. Then, at the end of her year, Bianca took over under the Domiciliary Care system. Hamish would quite often do the weekends and help during his holidays. Between the two of them and with Lynn's constant help we managed until Bianca had to return to Canterbury University at Christchurch.
When it became obvious that I wasn't going to get Erika, the Swiss girl, on Domiciliary Care, I wrote to express my dissatisfaction over such an uncompromising system to support the disabled, which is battle enough on its own. It was at this point that the Northland Disabilities Resource Center came on the scene. NDRC arranged a meeting with WDFF, Rodney Home Care and themselves, at my home. Consequently, Rodney Home Care paid Erika a similar wage to that of Domiciliary Care (with Cathy and Lynn doing four days between them).
Erika was a gem. When the final payment for the farm came in, she and I left Hamish at home and we had a month in the South Island visiting Bianca and friends before flying from Christchurch to Switzerland where we stayed with Erika's family.
We were away just over four months. Erika took me down to Italy where I stayed three weeks with our AFS student of five years previous. Renata (the exchange student) took me back to Switzerland via another friend of mine on the Swiss border. He had loaned, delivered, and set me up on a laptop computer soon after we arrived in Switzerland. He had encouraged me to get a computer years before. I was lucky in that I had become aware of CHAT by the voluntary Field Officer for MND/ALS soon after I had broached the subject with her. They were part of CCS and very quickly came up with a complete package deal that set me up in my first computer. They even did an article about it in The NZ Herald.
My friend in Switzerland had been a partner in the business that developed the programme I was using then. He had stayed with us years previously after being given our number at an MND/ALS symposium in Japan where he met an IVIND/ALS woman whom we had met in the States.
After leaving Switzerland, Erika and I stayed with this woman in Colorado for five days. We also stayed with several other friends I had made when in the States just after I was diagnosed. We had time in Kansas, the Rockies, San Francisco and Los Angeles. It was something that would never have been possible without Erika and Renata and her family in Italy. We flew back to Christchurch where I stayed with Bianca and Hamish who now had his first art job and was flatting with Bianca.
Difficulties with my care arose when Erika eventually left but life improved when theNDRC Needs Assessment Service arranged for my next Carer. Esther (my Accountant) and I were able to manage my own full time care. This made such a tremendous difference to the running of my total care. I could now hire and fire, set out work contracts, set the job description, and arrange the hours as I needed. I already had computer banking, was paying wages, and had a fantastic band of helpers and friends. My children had grown up and were now independent and useful.
I am now responsible for my own care. After my husband left and my children went away to University, the Government realized the importance of care for disabled people. Life for disabled people living at home improved as it did for me. However, there were always problems with the employment of minders because it was always administered by Agencies. In my case, I and the people working for me were at the mercy and whim of the appointed Administrator.
When the Government eventually conceded that there were problems with the current system, it was agreed that I and one or two others, would do a trial self-management. As on many previous occasions, NDRC Needs Assessment Service assisted me in every way possible, allowing me to slip into a smooth and easy transition with the new system. I was set up in business after having subdivided and sold my farm to buy a block of local shops which provided me with a more manageable income than that of the farm only a couple of years earlier. I had all the systems in place to manage this new programme with such incredible success.However, even with the support of NDRC Needs Assessment Service, I have never managed to have a direct credit of available moneys from Government without it first going through the appointed Agency. This would save Government much money, I feel.
The self-management regime gave me the freedom to join the MND/ALS National Council, becoming the only patient on the committee as delegate for the Northland MND/ALS Support Group. This involved two to three meetings in Wellington a year but I needed someone to take me. Lynn managed the first but Cathy (my other helper) felt inadequate so in desperation she phoned an MND/ALS friend of mine to see if he would take me to the second meeting.
This led to a romance between Roly and myself. After sorting my life out, I had never been more settled in my MND/ALS life. Now I had turned it upside down. But once again, with the help of the NDRC Needs Assessment Service, I had the confidence to embark on this new phase of my life. Five months later Roly and I were married.
I am writing this at the very southern most point of the South Island, in our caravan, with my ever- loving husband.
June 1998
(Roly's story is found in CALS CORNER page)
UPDATE:
Northern Advocate Article. To appear Saturday, Jan 03 2004
Reporter: Mike Barrington
Life was never the same for Queen's Service Medal recipient Jill Braddick after she was diagnosed with motor neuron disease in 1982. Previously, the mother of two young children had just completed a scuba diving course and was used to helping her husband around their sheep and beef farm at Mangawhai. Then she found the disease troubling her hands and feet would eventually cause her to lose control over muscles throughout her body. Doctors told her that she could die by 1985. But Jill Braddick didn't die. She went to the United States to find out more about the affliction destroying her body and learned that motor neuron disease - which affects about 700 New Zealanders - has no known cause or cure. The disease affects the nerve cells along which the brain sends instructions, in the form of electrical impulses, to the muscles. Degeneration of these cells leads to weakness and wasting of muscles. In the advanced stages of the disease, a victim may become almost totally immobile. Half of motor neuron disease patients live less than three years after diagnosis and only 10 percent survive more than 10 years. Jill, now 53, is among the rare few alive after more than 20 years. Some of those years were very hard. Her husband left in 1991 and her son and daughter spent much of their childhood helping their ailing mother. But while Jill's body was slipping out of her control, her mind was not. The disease does not affect intellect and memory and she has worked continually to form the New Zealand Motor Neuron Disease Association and to increase understanding, support and State financial aid for its victims. When she was home alone with her two children she was provided with 13 hours of state-funded home help weekly. After years of ``stirring up trouble'' among Government agencies and a couple of appearances on the Holmes show, she gets seven hours of help five days a week. She was helped by her sister-in-law, Lynn Kelly, of Mangawhai. And she has had a rock for support since 1997, when she married Roly Griffiths, formerly of Waipu, whom she met years earlier when his late first wife Alison was dying with motor neuron disease. Jill now spends several hours daily on a computer, which she can operate with one finger, using a program, developed for acclaimed physicist Stephen Hawking, who also has the disease. The computer bleeps and whirs as she slowly but confidently sends messages to motor neuron disease sufferers and support groups around New Zealand and overseas. When the Kaipara Advocate called to see her Jill was communicating by email with a man in North Sydney. His wife and sole caregiver had taken a bad fall. She couldn't move and he couldn't use the telephone because motor neuron disease had affected his speech. Jill got their daughter's telephone number, Roly gave her a call, an ambulance was dispatched and the fallen women was taken away for a hip x-ray. That was all in a day's work to Jill. But she said the presentation of her QSM was getting her ``a bit scared.'' Roly told her not to worry. ``We'll take the caravan,'' he said. The couple's caravan contains all the special equipment they need to deal with her condition. They will spend a couple of days making the trip from their home at Mangawhai to Wellington for the award ceremony. And Governor General Dame Silvia Cartwright will then honour a frail woman in a wheelchair who won't say much but her eyes will be shining and she will be smiling with pride.
Jill
lost her battle with ALS in February of 2006
"If you want to be found, stand where the seeker seeks." Sidney Lanier
