MND stories

Janet Townend, living with MNDJanet Townend

My name is Janet and in September 2012 I was diagnosed with MND.  I had been having all kinds of tests for a few months because I had experienced difficulty with walking.  Initially it had started with my feet slapping on the ground then I noticed that only a short walk would make me very fatigued.  I felt that I could not put one foot in front of the other and was pulling my body along.  I also got very fatigued doing chores around the place and noticed that hanging out the washing was quite an effort.  I was fine seated but as soon as I had any distance to go I was in trouble.
 
I was not overweight and at 63 had considered myself very fit. I gardened, walked and working as a teacher in a Primary School.  I saw a neurologist in June and he examined me, testing reflexes etc.  He told me not to be concerned he did not think it was anything ominous but that he would carry out and EMG a few weeks later. 
 
He was surprised at the readings from the EMG as the indicated Motor Neurone Disease.  I was not typical he said and wanted me to be seen by a board of neurologists and ordered all kinds of blood tests, lumbar punctures Scans etc.  In September the diagnosis was confirmed. 
 
At first I had Googled all I could on MND but actually after the confirmation of the diagnosis I decided to leave it alone and just get on with things as best I could.
 
I got in touch with the MND association which is based at The Niche at Charles Gardiner Hospital.  I have nothing but praise for all the staff there.  They were extremely helpful and continue to be so.  They have organized for a variety of health care people to visit me and make sure I am coping.  They have provided equipment and information and I know they are just a phone call away.
 
MND came to me at a very inconvenient time.  I had just separated from my husband of 40 years and was just settling into a relatively stress free life and wham.  I am, I hope coping with it quite well and doing what we should all do anyway and trying to enjoy each day.  I have a beautiful family and wonderful friends and they have all been absolutely wonderful.  I can honestly say that I have had some of the happiest days of my life since my diagnosis.  I know that I am dying slowly.  My strength is being eaten away and some days I just want to sleep and not wake up to face it.  That sounds awful, but the disease is.  I am lucky so far in that my speech and swallowing are not yet affected.  I can still walk around, but not too far.  I go out lots, say yes to every invitation, laugh, cry and do as much as I can each day. I know that  things will change, they do a little each day . 
 
I have decided that I will find myself a nice nursing home and a pallative care place while I can. I will have a fight on with my kids but I do not want them to have the burden of looking after me.  It will be a full time job and they have young families and life to get on with.  They will visit and be able to leave. 

I have always said to others " This is not a rehersal "and I hope that  I can leave this world knowing that I loved and was loved by those I care for.

 

A Piece of Elliot's StoryElliot Jay

This is my brother Elliot Jay. He was diagnosed with MND at only 18. After an 8-month battle he died aged 19 in April 2008. Elliot’s story defies the myth that MND only affects older people.
 
It was February 2007 and Elliot was just starting a business degree at Uni, working one day a week in a reputable Financial Advisory firm. He began to fall over uncontrollably, as his legs would collapse from under him and he struggled to walk up small stairs. On his last day when my Dad dropped him off at the front of the firm, he limped to the stairs, stopped at the base of them for a few moments, then turned, struggled back, eyes filling with tears, removed his tie and said “take me home.” He was never to return. In his first semester of university his friend would make jokes with him because he would take the elevator for only a small flight of stairs. He was walking down a popular street lined with cafes with his mate when he fell over. Onlookers thought he was drunk. With the help of his friend and a stranger he got back up. Little did we know this weakening of his left calf was the beginning of our tragedy.
 
Elliot’s condition deteriorated rapidly. By June he was in a wheel chair. It was not thought at this point that he had MND. From the onset it was a case of trying anything and everything. My parents were exploring every path of mainstream and alternative medicine in order to achieve some improvement. They travelled frequently to Sydney and other parts of the country and even considered an overseas trip to meet with doctors and healers. No measure was left untested and Elliot went along with it, with barely complaint or objection, he gave it his all. He would have massages and saunas regularly, and private Pilates instruction daily in hope of bringing some strength back to his young fragile body.
 
In January 2008 after tests showed his breathing capacity had ebbed to almost nil, he said “it’s not about giving up or throwing the towel in, it’s about acceptance.” He was right and from here on Elliot brought all of us friends included, to the same point, so that he could do what he wanted to enjoy the here and now.  From this time forward Elliot created another world. He received and played host to an endless stream of visitors, retaining a positive outlook and enthusiasm for whatever he was able to engage in. He created two fabulous living reef aquariums in his room, which he could oversee and enjoy. His walls were covered by art, done by family and friends and he even painted canvases for many with his mouth. Right to the end Elliot ensured there was music or some form of entertainment, always food and copious quantities of sweets and chocolates.
 
It is said the real test of a person’s character comes from adversity. What adversity Ell had confronted and handled with great courage, grace, humour and wisdom, and exceptional selflessness.
 
Let’s raise awareness and funds so that suffers of MND do not need to accept this horrible fate. Let’s work towards a cure so that we can lay the stones for a path of good health and happiness.
 
Emily Jay
 

Phil Brady discusses the inadequacies of Aged Care for people living with MND

Phil BradyI have motor neurone disease (MND) and have been diagnosed now for 20 years. I count myself as one of “the lucky ones” as the average life expectancy of MND is just two to three years after diagnosis. In my time I have observed the effects of this cruel disease, especially of those who have the fast progressing type of MND. My observations are that the current assistance available lacks the timely support to meet the needs of this progressively fast disease. Thanks to the initiative of the National Disability Insurance Scheme (NDIS) I believe that these issues will be addressed.

However, the NDIS only applies to persons below the pension age and the needs of persons who are aged 65 and over will be covered by the aged care system. Typically, people living with MND have complex and individual care needs that rapidly escalate as the disease progresses. These needs cannot be met by current or traditional aged care systems. You can take it from me that people with MND have no time to waste; they need fast access to appropriate assistive technology, support and services to allow them to live better for longer.

I became aware of inadequacies in the aged care system from the outset after undergoing the Aged Care Assessment Team (ACAT) assessment.  In my case, I had to wait for an ACAT assessor to visit me and then it was not until six months after my assessment that I was approved to receive Level Two care. Many people with MND may be dead before their ACAT assessment is approved and processed.  Should my health needs change in the future, I will need to undergo another assessment and endure another period of waiting until an appropriate home care package becomes available.

For my Level Two care package I have elected for my service provider to come in each Monday and Friday for one-and-a-half hours each day to shower, dress and give me breakfast so that my wife can have break. On all the other days my wife does this for me. My having MND is no picnic for my wife. Besides looking after me she has to do all the jobs around the house that I used to do as well as all the cooking and housework.
 
On 31st December 2014 I advised my service provider that we did not require their services from 6 January to 9 February 2015 because I would be staying with my daughter in Bathurst.
 
I only asked the service provider to not attend on my eight rostered days; however, we subsequently found that my service provider counted my absence as 34 days “social leave”. As a result, because I had taken more than 28 social leave days my care subsidy is liable to be reduced to 25%. This means that I will have to pay an extra $140.00 per week for only two days care of one and half hours each day. This does not seem to be correct, defies all logic and is clearly unfair.

Another gap in the system is in the provision of equipment. When I could not use my walking frame to move around the house, the Neringah occupational therapist made application to Enable to get me an electric wheelchair. There was a delay of about two months before Enable was able to supply me with an electric wheelchair. Luckily MND NSW was able to lend me an electric wheelchair in the meantime. People living with MND need fast access to equipment to help them live better for longer.

Have you found gaps in the aged care system? Tell your story: iwanttotellmystory@mnd.asn.au and join me in asking the Government to make the care system fair for all people living with MND: www.mndaust.asn.au/MNDWeek15

 

Proud member of:

International Alliance of ALS/MND Associations

ACNC Registered Charity

 

MND Australia would like to advise Aboriginal and Torres Strait Islander users that this website may contain images or names of deceased persons.