The Good, The Bad & Harry

Merv plays Ten-Pin Bowling

A year is a long time to remember, but there are some things which just stand out, usually they are the Good and the Bad.  In the year gone I have to add Big, Bad Harry.  Harry represents the changes which Huntington's Disease has made to our lives.  A sense of humour is helpful.

All the Good Things:


• Our fun filled family holiday in Mandurah in June                          
• Melanie took her HD positive news better than expected
• Dustin is happy with his life and his job
• Merv continues to attend the HD social group, a local day centre and plays ten pin bowling each Thursday with his support worker
• I am grateful for ongoing respite hours which allows me to spend quality time with Mel and have a little spare time for myself.
• I retired from work, freeing up quality time with Merv and Mel
• We paid off our credit card, a millstone around our neck after consulting a financial advisor
• I had time to attend 3 different, but relevant carer support groups since April
• I attended 2 carer retreats
• I completed the first stage of the Cape to Cape (WA) walk with Travel With Me in April
• My amazing Mauritius holiday and South African safari in October
• Christmas celebrations with family throughout December
• Merv enjoys his two fortnightly respites.  One in April and the last in October while I was away on holiday.  He is welcomed there.

All the Bad Things:

• I retired from work due to Merv and Mel's increasing needs.  I miss my much loved job as a coordinator for sixty volunteers
• Being on the pension means careful financial planning and restricted spending
• Our social life and going out together has noticeably reduced

And then there was Big, Bad Harry:

•  Mel was tested for Huntington's Disease in April and received a positive result in May
• Merv's sister who has HD is now in a wheelchair most of the time.  All her food is now vitamised
• Merv decline in the last year includes: slower response, difficulty in walking and amount of walking, difficulty in speech and swallowing
• My independence is limited. I need to book others to care for Merv if I plan an outing outside of his regular respite times

In a nutshell, it's not so bad, we have much more to be thankful for than to despair over.
As we wrap up 2013 we look forward to 2014.