EANC Gym Huntington's Fundraiser

Jenny from the Gym’s Journey with Huntington ’s Disease.

So I tease poor Matt most days about getting a haircut/shave and out of it a challenge to raise money for a charity has begun. Matt is very willing and when we asked him what cause he would want to donate the money towards he said Huntington’s Disease!!

Well my jaw dropped as I have lived with Huntington’s in my life for as long as I can remember. It turns out Matt’s Uncle is involved in medical research into Huntington’s. Which I didn’t know! I am super touched by this gesture.

Firstly what is Huntington’s disease?

I recently heard an interview on TV 1 where it was described as "a combination of Alzheimer’s, Parkinson’s, Schizophrenia and Cancer all rolled into one". This description nailed it on the head.

Huntington's disease is an inherited disorder that results in the progressive death of brain cells. The earliest symptoms are often subtle problems with mood or mental abilities. A general lack of coordination and an unsteady gait often follow. As the disease advances, uncoordinated, jerky body movements become more apparent. Physical abilities gradually worsen until coordinated movement becomes difficult and the person is unable to talk. Mental abilities generally decline into dementia. The specific symptoms vary somewhat between people. Symptoms usually begin between 30 and 50 years of age, but can start at any age. At this stage there is no known cure.

Here is my journey with Huntington’s so far.

I remember mum telling me she was sick and that she hoped they would find a cure one day for me my brother and sister but it was too late for her. I think I was about five years old so I didn’t really get it!

Until… Mum started to change. I was about 7, she got really angry all the time and then really sad. It was followed by the jerky movements and then the rest.

By the time I was around 7-10 years old my brother and sister had already moved out of home as they are older than me. My father did his best to bring up a teenage girl on his own with a sick wife. He did Amazing, he knew I was struggling with it.

I felt really alone like I was the only person in the world dealing with the horror. So he sent me away to camps with other kids coping with Huntington’s, where I learnt to deal. I was amazed at how many other families were going through the same troubles as us.

It was really hard growing up thinking I had this disease and I had no future so when I was 17 I went through the testing (back then you had be 17 or over to be tested). I had my testing at around the same time my brother and sister did. The day I found out I didn’t have it was like everything just felt brighter; I could now plan a real future.

My brother came back with the same results but unfortunately my sister came back positive.

And so it begins again. My sister is 45 years old, is in a private resident care at the moment and is suffering with the full on symptoms of this disease. It breaks my heart every time I visit her. I would not wish this disease on any one.

As for myself. I became a personal trainer/ gym instructor and I try every day to share how bright, amazing and fun this life can be. If you see me being extremely happy to see you in the gym or have once witnessed the full extent of my happiness (eg the cone, clapping or even the seal dance) you will now understand.

I couldn’t think of anything more amazing than helping fundraise to support the Huntington’s Disease Association so that other families dealing with this disease can get the support I so needed!

And my dear Matt I am so so very honored that you would help me with this, even when I tease you.

Much love your gym mum xxoo

P.S first shave is mine