My life with HD and being employed with HD

by Mark Baker

 Gidday, I'm Mark Baker and I'm 45 years old. Why am I here?  Because I am hoping to inspire someone by telling my story of success. My message is yes I can contribute.

 I was 14 when my Mum told me she had Huntington’s Disease. It gave me an answer to what it was, but not to my future.  Growing up with HD was not easy.  When Mum’s HD was too noticeable I would cut class to help at home and found that it was easier not to ask friends back home.  My Mum moved permanently into Porirua Hospital when I was 16.  I was confused, angry and I missed my Mum.

 I left school barely getting School Cert but determined to put some goals into place.  I enrolled at polytech, got a local job and finished with City and Guilds.  Then a change of career.  I was driving trucks for 5 years.  Next I was at a local hotel as an assistant manager.  I got married to Anne at 21. We saved hard to buy our own house.  We have raised 3 great kids who have excelled at school.  All 3 were year 8 Dux and doing well at college and university making me a very proud Dad.  Yes, we have succeeded.  I am still married.   We live at the same address, the same house.   Why change when you live in paradise.  I have always made my own decisions by calculating risks, analysing and pursuing the end results.  I enjoy the challenges of work.  I grew up with only the basics but I had nothing to lose.  I could only win.  With drive and determination I launched into being self employed, first as a courier then as a sales distributor. Working long hours I managed a successful business for 10 years.  By being able to relate to people, putting in the hard yards, I increased sales, turning the business into one with gross annual sales of over a million dollars.

 When I was 35 I looked into the predictive testing.  Unfortunately the test was done in Vancouver and the probability of a correct test was only 80%.  6 years down the track with the test in New Zealand I decided to take it and found that it was positive.  I asked myself why stop?  So I didn't.   Nowadays I work for an awesome company. International Game Technology who have supported me all the way.  The news that I had HD came about via a medical report sent to my employer after I'd had an operation.  Having explained what Huntington’s was I asked that it be kept confidential so the general staff didn't know. Management supported me, from implementing simple computer support systems to understanding my reasons for confidentiality.  I've been with IGT for over five great years, starting there in dispatch delivering game machines throughout the North Island to the timely transfer in running the warehouse distribution.  Now I am a qualified technician, having successfully passed an ESTA polytech course in 1999.   I have the sole responsibility for the programming of software for their gaming machines in all of NZ.  To do this you need to plan and think and problem solve. 

 After two years the people at work had started getting the wrong impression. It was time to give a brief explanation of what Huntington’s was and how it would affect me.  This was a very traumatic time to open up something so personal but it was necessary that they understood.  After a couple of weeks they started to accept me for what I am.  I am still the same person, same principles, same values, same heart.  My advice is to be active, to exercise the mind and the body.   To be positive, honest and to give it 100%.   I have never intentionally hidden my illness; I've just put it to one side and lived life the best that I can.  I acknowledge that there will be a time when I won't be working.  I have just instigated a reduction of my hours at work, but for now it is what helps to keep me motivated.  

 The following was published in Huntington’s Newsletter:

 Life goes on day by day

A good day is when the sun is shining, when everyone is happy, when things go right and you are feeling positive. You set small goals and do them one by one. Success is great.

On a bad day you are feeling glum. Small things go wrong, but you are too proud to ask for help.

Success is at arms reach, but you are not quite there. You think you have failed, so the safest thing is to do nothing, so you hide.

All your helpers that you love have a life but you don't want to get in their way. Your emotions seem to have gone forever. It makes it so hard, you want to show them your love and cherish them but you just can't.

It’s like your memory is like a grandfather clock that has a cog missing. It looks great on the outside, but it misses a minute one day and so on.

Nobody notices at first but you do.

You find solutions to your problems, make adjustments to compensate. You fool everyone, until the problem gets too big.

In your mind you have the answers for everything. But you can't get them out in time or in order 

So they are wasted.

Trying to remember is a joke. You can laugh at yourself, write it down they say. You try, but then you forget to do just that.

Life goes on, can there be anything worse. No HD has got a hold.

So make the best with what you have got. So smile and be happy. You may think there is no tomorrow, that it will never come.

But hope is around the corner. Where there is life, there is hope.

Luck has nothing to do with it, life is only what you make of it.

So do something, anything and keep smiling.

 I would like to introduce my manager Ken Baird, from International Game Technology who is a great support to me in my workplace. He will be talking about the company's perspective on issues surrounding an employee with Huntington’s.

 Good afternoon.

 My name is Ken Baird.  I am the Production Manager for IGT NZ Ltd.  IGT is a major producer of gaming machines, and here in NZ we assemble machines imported from Reno, USA.  I am here to talk to you about an employer's perspective of having someone with Huntington’s working for them.

 In all honesty there is no perspective for IGT or me.

 Mark is a respected team member who has moved from being our store person to a role of technical assistant, and Mark is a qualified technician.   The role of technical assistant calls for Mark to burn EPROM's which is a chip that is used in a gaming machine.  He also has to pick, order and dispatch a variety of gaming machine parts and art.  This is no easy role, as we have over 50 different games with 2 to 3 variations per game.  I have been trying to learn a bit about it myself of a late and I do not know how he can do it day in, day out.

 When I took over as Mark’s supervisor, Mark was asked for his permission that I be told of his condition as this was and is a confidential issue and one that is covered by the Privacy Act.  Only 3 senior Managers knew of Mark’s condition at the time. Since then, as you have heard from Mark, he has told all his fellow workers.

 IGT, in conjunction with Mark, have discussed how we can utilise Mark’s skills for the maximum time.  After these discussions we have agreed to employ a part time staff member for one day per week who Mark will train.  Once this person is trained Mark will reduce his working days from 5 to 4 and together we will monitor and discuss any further reduction in hours as and when either of us sees it is required.

 Mark’s condition has not affected his working ability at all and he continues to perform his role with exceptional skill and professionalism.  I know this, as I am the one who has to keep giving him pay rises.

 For IGT’s part, we do not need to provide any specific tools, equipment etc to assist Mark in his role.

 From my point of view, as Mark’s supervisor, I am more than happy to extend his working life as long as possible.  I have great respect and admiration for Mark; for the way he continues to perform his role at the level he does given the pressure I know I put him under at times when work loads continue to increase; for when we have software issues and I need truck loads of work done quickly and with no margin for error.

 I was present when Mark informed his fellow workers of his condition and to see the reaction was amazing. It ranged from gob smacked, drop jaws to tears.  This is the high regard in which Mark’s fellow workers hold him.

 The most positive thing for me since Mark has told everyone is that they treat him no differently from before.  They still give him a hard time if he spills a bit of his coffee on the store floor etc.  The only difference I can say I have noticed is that now they may offer to help when they can see his work load is horrific, whereas in the past they would probably come and see me.

 I appreciate that I have not really said a lot here but in all honesty, Mark is no different from my other staff.  He works his hours; he does an excellent job; he is an active team member; he is part of my team and a part of IGT.