This week, Final Flinger, Jane Duffy shares her experience of living with Huntington’s Disease and tells us a bit a about how that impacts on her life. 

My Story – Living with Huntington’s Disease

In early January 2012, my sister in law emailed me to ask if I knew of any inherited illnesses in the family history as she was concerned about my brother’s health. (I hadn’t seen my brother and sister in law for 20 years.) She had also said that my Aunt had been diagnosed with Huntington’s Disease (HD).   There was previously no history of HD in the family.

On reflection, I thought that my mum may well have had HD, but she was never diagnosed with it.

This photograph was taken in spring 1991, it is the last photo I have of her and the last time I saw her. She took her own life less than 6 months after this photo was taken.

I decided to go through the predictive genetic testing and I got a positive test result on the 6^th June 2012. I can only describe the feeling, as like being hit with a cricket bat.

This is Claire’s Graduation as a Biomedical Scientist 4 weeks after the test result – I hadn’t told her the news, there was no “right time” to tell your daughter that you will develop HD, and that there is a 50% chance that I have passed that Gene mutation onto her. I can’t explain how it felt to have to tell the most precious thing in my life the news, and all that meant, for both her and me. It is the most difficult thing I have ever had to do in my life; it was the first time as a mother that I could do absolutely nothing to make things better.

I became obviously symptomatic in October 2012; I retired on the 30 September 2013 on ill-health grounds. This was another hugely difficult process to go through, and the decision relating to my career was immense one for me – who would I be if I didn’t have my career?

The priority since then has been to do as much future proofing as I can, while I still have capacity:

• My FINDY List, (F*** It, I’m Not Dead Yet) – my Bucket List, including my priorities for the time that I still have an acceptable quality of life.
• Financial Planning: Mortgage, Endowment Policies, Life Insurance, Permanent Health Insurance, Pension, Debt Management
• Career and Profession
• Legal Planning: Will, Power of Attorney
• Health Planning: Advanced Statement, Advanced Care Plan, DNA CPR, Brain Donation
• End of life and Funeral Planning
• Adaptations to ensure I don’t have to move from my home

It is very easy to get subsumed by the enormity and impact of Living with Huntington’s Disease, but I continue to live my life with it, rather than dying with it.

Every day is different; this is where I am today:

• Learning to manage my symptoms – accepting, accommodating, adapting and changing
• Prioritising on a daily basis
• Working through my FINDY List or Bucket List – currently learning to groom and ride horses (with a lot of support!)
• Cat Protection Volunteer
• Involved in European research/Improving the HD pathway
• Volunteer for HD Scotland

and now my latest role…

• Blogger for Final Fling!

 

Jane Duffy trained as an Occupational Therapist in England, where she met her future husband, Eugene. After she qualified in 1988, she first worked with adults with profound learning and physical disabilities. She moved up to Scotland and began her career in Social Services, working with people with physical disabilities and sensory impairment. Their daughter, Claire was born in August 1989.

About Huntington’s Disease

Huntington’s is a rare, inherited genetic disease that damages nerve cells in the brain, causing deterioration and gradual loss of function of these areas of the brain. This can affect movement, cognition (perception, awareness, thinking, judgement) and behaviour. Early symptoms can include personality changes, mood swings and unusual behaviour.

There is no cure for Huntington’s disease and its progress cannot be reversed or slowed down. In the later stages of Huntington’s disease, the person will be totally dependent and will need full nursing care. 

If a person with the faulty gene has a child, that child has a 50% chance of also developing the disease.

Get more information: Huntington’s Disease Association, England & Wales; Scottish Huntington’s Association

If you have a life experience to share, contact us.