To Love and Help: Living with Huntingtons

By Denise Waide

Denise Waide is a professional lady who works hard day and by night, but under all her smiles and bubbly personality, she hides a dark secret. Her health remains under a strict balance on a daily basis.
Her secret has taken its toll on her life and her family and the special bond between her and her identical twin sister.
Denise Waide has run far away to greener pastures to look for piece and tranquility.
Huntingtons disease is a neurological degenerative condition that affects the motor neuron and the brain. This book is based on a true story.

• Language: English
• Publisher: AuthorHouse UK
• Release date: Oct 13, 2014
• ISBN: 9781496991294

Denise Waide

My name is Denise Waide, I am a 46 year old lady, who lives by myself; I retired from social work two years ago, I decided to write a novel based on a true story. I live in a small village outside of Bath, England. I enjoy life to the full, living each day as it takes me, but governed by my day to day health condition. The trouble with Huntington 's it doesn't automatically allow you to have fun and live freely, you live everyday individually not really sure how the day will pan out or how your exhaustion levels will leave you feeling. My book is called "To love and help", living with Huntington's. I currently have been diagnosed with a Nuerological Health condition called Huntingtons Disease, which affects the motornuerons in the central nervous system. I carry the Huntington Gene first diagnosed nine years ago. I qualified as an Assessment and Reviewing officer for the Adult Care Team, Social Services where I worked with people with complex health conditions and multiple disabilities, I gained knowledge of mental health disorders, safeguarding vulnerable adults, the legislation which goes along side such disabilities and peoples human rights. I was responsible for following the code of practice, policies and guild lines and procedures to ensure clients where delt with fairly. I have gained In-depth knowledge of complex health care and have a good understanding of health care and care packages based on peoples multiple disabilities and writing reports. Through all my knowledge and understanding of health conditions; I am now facing a terminal condition which not only will affect myself, but my immediate family. I felt that because of the life skills and background knowledgei have gained through my working life, I chose to keep my health condition to myself for as long as possible. This took its toll on my health and how I chose to share my life with my family. To love and help was written to help one person, who may read my book.

Book preview

© 2014 Denise Waide. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse 09/10/2014

ISBN: 978-1-4969-9128-7 (sc)

ISBN: 978-1-4969-9127-0 (hc)

ISBN: 978-1-4969-9129-4 (e)

Any people depicted in stock imagery provided by Thinkstock are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

CONTENTS

Chapter One February 2005

Chapter Two Three Years

Chapter Three A Special Bond

Chapter Four Children

Chapter Five The Lady!

Chapter Six When the Shit Hits the Fan!

Chapter Seven The Contract

Chapter Eight Legal

Chapter Nine Year 2008 – Meetings

Chapter Ten Achievements

Chapter Eleven Living with Huntington’s Disease

Chapter Twelve A Fond Farewell

Chapter Thirteen Where to Now?

Cry and the world cries at you; smile and the world smiles with you.

A day that begins like this leads me to where I am in my life. Umm … I sit here and wonder why I have to write this introduction. Huntington’s disease is a neurological disorder which affects the motor neuron skills. Cognitive disorder can affect a person’s daily functions.

CHAPTER ONE

February 2005

Today I had an appointment to see the consultant neurologist at the Royal United Hospital (RUH), Bath. As I sat patiently in the waiting room, I reminisced about the day before.

I had a massive row with Trig in the bedroom, full on tantrum about nothing! I had flipped and started ranting about something or another and threw something at him.

Trig shouted abusively at me and said he couldn’t understand what was wrong with me; I’m normally so calm! Trig is Richard’s nickname. He picked it up as a young lad and it stuck.

I was so stressed. Little did Trig know that I would soon be getting the results of my test.

I looked around the waiting room in the neurology centre in the hospital, scanning nervously every detail, including the notice board – pinned, full notices and pieces of paper about events.

I looked at the receptionist, sitting and scribbling at her desk. I could hear phones going off in the background. Nurses, dressed in their smart uniforms, were scuttling by, discussing patients.

A sound rudely interrupted me.

‘Mrs Waide? Mrs Denise Waide?’

I looked up, smiled, and said hello.

‘Please come this way. The consultant neurologist will see you now.’ A young nurse stood waiting for me.

I stood up, hesitated, took in a deep breath, and held my head high. I smiled at the nurse as I walked confidently behind her. My heart was thudding so hard it hurt.

I walked into a side room on the left, off the long corridor. There was a small table in the corner of the room with little furniture. A lady in her forties sat behind the table, looking forward at me. Her hair was dark brown and wavy. I thought she was too pretty to be a consultant neurologist.

‘Take a seat,’ she said and gestured with her hands to the empty chair next to the desk. I smiled and sat in it, gazing around an empty room.

‘Do you have any questions you would like to ask before I discuss your results?’ asked the consultant.

I began to think. Questions? What questions? About what? What was there to ask? I wondered.

I had all the counselling anyone could need. After all, I’d had about three months of counselling with the trained Huntington’s genetics nurse specialist who had come to my house to discuss with me how I would react if the results were positive. It doesn’t matter how much counselling someone gives you, how much you go though, or whether you will be able cope with what is said. No one could ever have prepared me for what was about to come out the consultant’s mouth.

I could hardly take it in the muffled sound: ‘High risk positive, number forty-two.’ I could hear the sounds but not quite hear what she was saying. ‘High risk positive, forty-two.’

The words soon followed from my mouth, without any warning. I said, ‘Bullocks! Fuck! Shit!’ and stared at her in disbelief, not able to say anything else.

‘Are there any questions you would like ask?’ the consultant asked in a calm, monotone voice, ‘Or would you like to speak to a counsellor?’

All I knew at that precise moment was that I wanted to run as fast as I could out of the hospital. I pushed back, got out of my chair, and walked out of the room without saying a single word! I walked rapidly down the corridor with a look of sheer horror, oblivious to who was around me. People were a blur, hustling, getting on with their own lives. I couldn’t get out quickly enough, as I fumbled in my bag for a box of cigarettes and for a lighter, lighting it as I left the building in complete and utter fucking shock! I inhaled long, hard breaths, drawing the smoke deep into my lungs and blowing it out rapidly.

I walked across the car park, passed many cars and people, and fumbled for my keys, still oblivious to sounds. I opened the door, ensuring not to set the alarm off, and I sat in the car rummaging for my mobile phone out of my bag. I was in utter, deep shock, and at that stage I was emotionless.

I sat in the car, staring at my mobile – glazed, not doing anything, still trying to grasp whether I heard correctly or they had got it terribly wrong. Maybe it wasn’t true!

I tapped in 0114543245 on the keypad of my mobile, the doctor’s number, and dialled the GP’s surgery. I could hear the sound of ringing, echoing, sounds in the distance. ‘Hello?’ I could hear.

‘Hello?’ I asked for Dr Raine, and the receptionist put me through.

‘Hello,’ said Dr Raine. ‘Was it positive?’ she asked.

I replied yes. I asked her for a sick note. There was no way I could go to work.

The second phone call I made was to work. I bypassed all my work colleagues and went straight to the area manager.

‘Carol, it’s Denise,’ I said. ‘Its positive.’

There were very few other people who I proceeded to tell, as I will explain later, but I knew at this moment I was not going to tell any one else. No family – not even Daniel, my son!

How on earth would I be able to tell him that I have Huntington’s disease and that not only will I die of it, there is a 50 percent chance he could have the same faulty gene and I will fuck up his life, too?

Daniel was my only child because I had a hysterectomy at the age of 23. I had brought him up mainly by myself following a quick divorce.

The following weeks were like a blur, a trance, difficult. Routinely I would avoid Daniel and Trig. I told them that I was under stress at work and couldn’t cope, and that I had been signed off work.

I was having a true breakdown inside. Every day that I looked at Daniel I wanted to cry and hold him and not let him know. I wanted to scream and say I’m sorry. Sorry for what? Sorry that I have wrecked his life, sorry that his mum has Huntington’s disease and that he will see me suffer with it, and the knowledge that he has a fifty-fifty chance of having it himself. All sorts of emotional thoughts and feelings went through my mind.

Wednesday morning I got up as usual, said goodbye to Daniel and Trig, sent them off to work for the day, and smiled and waved them off. It was bitterly cold out. The ground was very dry and crisp, and it looked as though it was going to snow.

I went back upstairs, wandered aimlessly in and out of rooms, and decided to have a shower, all the time thinking how this terrible disease was going to get me, wondering how would it start. Would I suffer? How would it end?

I towelled, dried, walked into the bedroom, and got dressed. I looked at myself in the mirror, put on my make-up, smiled, and told myself to be strong, be brave! Then I walked down the stairway, holding my head high – one at a time, slowly – slower – and completely crumpled at the bottom of the stairs, falling into a blithering heap, crying uncontrollably, a complete mess. I was choking, and my nose was running, which I continued to wipe into my tears!

‘I can’t do this. I can’t do this! How I am going to do this?’ But I was still determined not to tell anyone.

Every day I cried, in private of course, behind closed doors, in bed at night. Never did I let anyone else see me or the emotional stress that I was going through. I got used to putting on a front, getting my make-up on, hair done, and dressing well, with the most important item of clothing: my hat, which I wore daily to hide from everyone. I soon realised that if I walked with my hat on and stooped down, people