Until there's a cure ... there's care

Sue and family

I guess that before I talk about MND I need to write a bit about my relationship with my sister, Sue.

I am the youngest of three, Sue was 4 years older than me, and my brother, Jeff, is 2 years older.

Sue and I shared a rare sibling relationship, we never ever fought and we were extremely close. Sue introduced me to the sport of water skiing and we would holiday together every summer, skiing behind a boat that we jointly owned.

Sue never had any children of her own, though this was not due to anything medical. This in itself is a tragedy as she would have been an awesome mother. She was extremely close to my two children and was more than just their Aunty, she was like a surrogate mother to them both. This was also the case with my brothers’ children.

I was fortunate to have grown up in a family that was extremely close and family orientated. We would all get together for lunch on Saturday and dinner one night a week, usually on a Monday. This was never seen as a chore as we all loved spending time together and enjoyed our grandmother’s great cooking. How lucky were we that we could be spoiled in such a loving environment?

Sue started up a business which grew to be huge. My mother and father along with myself worked in the business and all the kids would come and help during the school holidays. The business was selling lingerie through party plan and consultants would join to sell the product. This was Sue’s “baby” and she put her heart and soul into making it a success. I was extremely proud of her achievements and felt that I was the luckiest lady alive as only I could say that I was Sue’s sister.

Sue’s company is still active today with over 2000 consultants Australia wide. (I refuse to name this company for personal reasons).

Now my introduction to MND

I remember the first time I ever heard the words “Motor Neurone Disease”. Sarah Ferguson, the then Duchess of York, spoke of MND. I can’t remember her association but either a family member or friend passed away and she spoke of this. I remember thinking at the time that it was a strange name for an illness as I had no knowledge of Motor Neurones and how they controlled muscles in our body.

I never really thought about MND after this one time. Until…….

As I have already mentioned I worked for Sue. I worked in the warehouse which was in a separate building to where the offices were. One day I went across to the offices to speak to Sue about some work-related matter. She was standing in the foyer with two of her colleagues and was massaging her left hand between the thumb and first finger. I asked her what was wrong with her hand and she replied that she was having issues with her muscle and that her hand was a bit weak. I didn’t think much of this as it seemed to be a minor issue.

Months went by and I noticed that her hand had not seemed to improve at all. When I asked her about it, she told me that she was seeing a specialist and that they were looking at different diagnoses. I remember her saying to me that it could just be something minor or it could be as sinister as Motor Neurone Disease. I still did not know much about MND at this time but just the fact that Sue used the word “sinister” put the fear of God into me. As close as I was to Sue I used to dread every time she would phone me as I was scared of what she might say. To put this into perspective, Sue did not have to phone me often as I would see her on an average of 4 – 5 times a week, so if she did phone, it was always for a very important reason.

After seeing specialists over a period of about one year, finally the cruel diagnosis came through. Sue had MND and there is NO CURE. My beautiful sister had just been given a life sentence at the young age of 54. She was told that in three years she would either be dead or significantly disabled. Sue was never one to give up and she was not prepared to do so now. She considered herself fortunate that she was in a financial position to look for alternative treatments. She spent hours with a personal trainer where she would stretch and ride an exercise bike for 5 or so minutes and walk on her treadmill. Her biggest goal at this stage was to recover sufficiently to be able to wear her high heels once again. She was like an Australian version of Imelda Marcos and had a huge wardrobe of the most stunning shoes.

Sue never gave up hope and at some time during her illness she was told that she might in fact have Multifocal Motor Neuropathy, a progressive muscle disorder characterized by muscle weakness in the arms and hands, which made sense as her illness had originated in her hand. As opposed to MND, MMN is not a terminal illness. This gave us all a little ray of hope. Sue was subsequently sent off to have treatment at St Vincent’s Hospital in Melbourne where she had intravenous immunoglobulin therapy. She was told that the only way this diagnosis could be confirmed was if the treatment was successful. I went to most of these treatments with Sue and I will never forget the joy we both felt when one of her fingers started to spasm during a treatment. We both believed that this was a sign of improvement and that she really did have MMN. Sadly, this joy did not last long, there were no more signs of improvement and we were told that the spasms she had felt were a one off and not due to the treatment.

Sue saw herself as fortunate that she was in a position to travel the world to seek alternative treatments. Her first treatment was to travel to Cologne in Germany where she sought stem cell treatment. She found out that her body was extremely toxic so all of the stem cells were killed off. She then travelled to a small village in China for a few weeks where she had acupuncture, remedial massage and a cocktail of Chinese herbs. Unfortunately, this also was ineffective.

Still Sue never gave up. Sue believed that her illness was potentially not incurable and that she could find a way to stabilise and manage her “condition”. She felt that as long as she could still walk and talk she would be able to fight MND every day. I too believed that if anyone could beat this disease, it would be Sue.

As time went on Sue continued to do most of the things that she loved. She went to work every day, driving herself there for as long as she could. She travelled overseas for her work and continued to attend all of the monthly meetings that were held at every capital city in Australia. She loved to spend time with the consultants that attended these meetings and she considered herself lucky that she had such a large “family” whom she loved and who all loved her back.

Not once did I ever hear her complain, feel sorry for herself, or ask why she was given this debilitating illness. I was amazed at her strength and resilience.

As time wore on it became evident that MND was going to win this fight. I hated the thought that I was going to lose my sister, this person that I had always looked up to as my role model and mentor; someone who had always taken such good care of her health and her fitness. I watched her grow weaker and weaker and the weight was just falling off her. This bright vibrant lady was wasting away to just a tiny fragment of herself but still she managed to smile and crack the odd joke here and there. She also said that there would be no way she would ever rely on a wheelchair, that she was going to walk one way or another without having to sit in a chair.

When the end came near, Sue was admitted into intensive care at Cabrini Hospital in Malvern. Finally, and sadly, Sue accepted the fact that she was dying and there was no way she was going to recover. After spending only one day in hospital she told me that she did not want to die here and that she wanted to go home. I spoke to the head of the ICU and he promised that he would do what he could to uphold her wishes. This incredible man managed to put together a team of three medics; one palliative care doctor, one palliative care nurse and an ICU nurse to accompany her. On Thursday, 27th October 2011, after spending only 4 days in intensive care, Sue came home. She was met by her family and closest friends and work colleagues. We all sat with her in her sun filled family room and told her stories of times we spent with her and what she meant to us all. Sue passed away peacefully knowing that she was loved and had been an important part of so many people’s lives.

Sue had many mantras in her life, one was to believe in yourself, another was to never jeopardise your integrity. She was an extremely passionate lady and had an abundance of dignity. I will love her forever and try always to live by her mantras so that she will always be proud of me.


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