And I Always Will

By Chris Phillips

This is a true love story about the funny things that happened during our initial period of personal discovery. Years later, early signs emerged that Ashlyn had Huntington's Disease. This neurological disease slowly destroys judgement, personality, movement and emotion. It is devastating to watch

with no medical treatment so, we had to fin

• Language: English
• Publisher: CMD
• Release date: Nov 18, 2020
• ISBN: 9781954223059

Chris Phillips

Christopher Phillips is a manager and senior software developer at Dell SecureWorks, Inc. He is responsible for the design and development of the company's Threat Intelligence service platform. He also has responsibility for a team involved in integrating log and event information from many third party providers for customers to have their information analyzed by the Dell SecureWorks systems and security professionals. Prior to Dell SecureWorks, Christopher has worked for McKesson and Allscripts where he worked with clients on HIPAA compliance and security and integrating healthcare systems. Christopher has over 18 years of experience in software development and design. He holds a Bachelors of Science in Computer Science and an MBA.

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Copyright © 2020 by Chris Phillips

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Contents

Introduction

Chapter 1: Beginning by Meaningful Chance

Chapter 2: The Explosion.

Chapter 3: Days Go By.

Chapter 4: Honouring our gift.

Chapter 5: The Turning Tide.

Chapter 6: Current Research Into HD

Chapter 7: Epilogue - Destined Difficulties

Chapter 8: References

To my courageous, warrior and loving wife Ashlyn.

Introduction

I have turned on our favourite piece of music – Albinoni’s Oboe Concerto in D Minor Opus 9/2 Adagio. It touches me so deeply I am in awe. It was one of the first pieces I played to Ashlyn when she visited my farm in Mt Macedon and even as I put this on for her she had a look of total wonder on her face. She knew the piece very well and said it was also her very favourite piece and she had worn out many tapes of it on her car player. Those were days of wonder and excitement as we learnt more and more about each other. This book begins with those wonderful days and what we discovered.

Today as I am writing this, the same beautiful piece draws deeply on my greater sense of sadness and pain and even as that is rising, Ashlyn rings me on my mobile and listens to the end of the piece. She tells me it makes her cry every time she hears the Oboe. We chat for several minutes more making plans for the next day and then I put the music back on and continue to write.

This is not an easy story to tell. But the beginning has so many fun aspects I want to allow you to hear both of our voices tell you what happened as we had jointly written the first four Chapters together over eight years ago but then this document has remained unchanged and unread as we have been facing some tumultuous times and massively overwhelming health issues.

Ashlyn has Huntington Disease [HD] that is conveyed genetically across the generations and her father and his father before him were also sufferers. It is primarily a neurological disorder and as parts of the brain are affected in later years so there are corresponding losses in motor skills, speech, decision making and judgement. There are also increasing risks of falls, choking on food and difficulty expressing ideas and thoughts. In later years there are also issues with aggression and dementia in some cases. This of course sounds like a pattern of responses but it is nearly always hard to work out how HD will manifest in individual cases.

There is no known cure for HD and there are many in the medical profession who have classed HD as the worst disease known to man. There are good reasons for this classification. The effect on the sufferer is obvious but the effect on the family is less often explored. I want to address both issues in this document. Consider for a moment Ashlyn’s ability with language was vast. She has thousands of books and remembers many of them. She lectured at University level but today she has trouble writing a sentence. This is a massive change to have occurred in about ten years since onset of HD. Mercifully most sufferers are not fully aware of their symptoms but often I have noticed the frustrations seething underneath the surface and breaking out into violence. Handling those situations and seeing your loved one suffer so much is quite earth shattering.

Chris Phillips

January 2018

Chapter 1:

Beginning by Meaningful Chance

This is quite a remarkable story. It is a true story of love, passion and change.

One cold winter’s day I was phoned by a friend who said that she was coming around to the farm where I lived and bringing her sister with her. Although I thought I knew her quite well, I did not know she had a sister and I did not know why they were visiting.

My small protea farm in Hesket Victoria, was near the famous Hanging Rock. This friend had visited the farm numerous times and we had often walked and walked as we talked and talked over how she was dealing with a difficult situation she had encountered in her workplace.

Driving with my younger sister, I was totally absorbed with keeping her persuaded to complete my objective. She is a difficult person to help at the best of times and when I realized how much work had been done for her, for free, I was determined to thank the person, in person. However, my obdurate sister had an endless series of obstructive reasons why this was not necessary.

My energy and resolve were directed to saying, Thank You as I believe the polite shall inherit the earth. I have no recollection of the roads or surrounding areas as my sister drove us to Hesket. Our internal landscape dominated my attention. It took an incredible amount of focus and energy to keep us both going on what seemed a sensible and polite thing to do.

Whilst waiting for the two women to arrive, I split some firewood and lit the fire so the chill was off the air before they arrived. I recall my surprise at finding that my friend had a sister and I reflected on the difficulties and agreements reached during a recent meeting I had attended with her and her employer.

The relief and happiness I finally experienced in getting us to the farm, bubbled over into laughter when I realized that there was a grey-bearded ‘woman’ in front of me called Chris!

I exactly recall meeting the laughing Ashlyn as I greeted them at the door. She was wearing a long black coat that contrasted with her long blonde hair at the top and shapely legs at the bottom. I was surprised when Margo introduced her sister and I said I didn’t know you had a sister. Her reply stunned me further. You know nothing about me. I floundered about thinking of all those walks up the mountain and visits to her employer etc. I was much more used to people being open and honest with me and this seemed outside my experience to know nothing about her after all the time we had spent talking. She certainly was a mystery. I was so taken aback I missed her sisters name.

As the sisters settled into the fireside area, I finished preparing the coffee. Ashlyn removed her coat and stood with her back to the fire. She was wearing an all black outfit of black high-heeled shoes, stockings, a low-cut and short black dress that showed ample bosom and legs! She was lovely but not at all appropriately dressed for a cold Hesket winter’s day.

Feeling welcome, warmed and quite at home, I stood with my back to the fire and said why we were visiting. I quickly came to the point of saying Thank You and said that my professional background had let me have a deeper understanding of writing up those tricky workplace situations and the time it takes to deal with them.

Surprised at being thanked, I remarked that I have never been thanked