Living Positively with HD

The following is a speech presented by Dianne Harris at the National Huntington’s Conference in Burnie, Tasmania, November 2003.

Hi, my name is Dianne Harris, I’m a wife, a mother, and I have a full time job.  I also have the HD gene and I expect to have noticeable symptoms, sometime in the next two to three years.

I’ve know since I was 14 that my grandmother had HD, since 21 that my mother had HD. When I was 27 I was tested for the HD gene and obviously I received the bad news that ‘yes’, I do have the HD gene. I’ll let you in on a secret—I’m 38 now.

I’m not here to remind you the effect HD has on fami­lies – you’ve either lived it all via your family or your clients. I’m not here to ask for money or offer a cure. I’m not here to tell you the typical doom and gloom story about HD. I want to give you a different perspective.

I want to tell you I have never ever once regretted having my HD test and I want to share with you what HD has taught me and how it has made my life bet­ter. You might think it’s unbelievable that I can say good things about having HD when I’m so close to be­ing sick, but you might be surprised.

HD makes me SPECIAL. Everyone wants to be special, a unique & original individ­ual. I’m special in a way that not many others are. We’re all here at this meeting today because of people like me who are effected by HD. Now, it might not be special for something wonderful, but it’s something!

My HD means I always have something to talk about, because people find the HD disease and research fas­cinating. They love to hear about HD and then they tell me their problems. Have you ever noticed when you tell someone about HD, they tell you about the medical problem their family has and suddenly your problem doesn’t seem so bad.

Because I have HD, I also get almost unlimited ac­cess to psychologists, psychiatrists, neurologists, dieti­cians, speech therapists, social workers, geneticists etc. I don’t know about you, but I love to learn new things and these people are always very interesting people with a lot of information to share. Without HD, I would probably never have got to meet them. Even better, I get full access to counsellors. This has been pure heaven! I’ve had 6 counsellors now, from the outstanding Sandy Taylor and Pam Marshall in the beginning, through to divine Winsome and Viv to­day. I have loved meeting every one of these women. We regularly overstep the patient/counsellor boundaries, to the point where some counsellors have joked they wish they could resign before I became sick, because they can’t bear the thought of seeing me get sick. I am very pleased to think of these people as being better than friends, because there is nothing they won’t do for me, and they are always there when I need them.

Because of my HD, I’ve been involved in the HD support group. Over the past 7 years or more I’ve met a wonderful group of very funny people. Many of the invited speakers coming to our group expect us to be morbid and depressing. A guest speaker even once asked Pam’s advice about what topics he should avoid so he wouldn’t upset us. She happily reassured him, nothing was taboo. At the end of the meeting, he told her, he had never met such a happy bunch of people and he had a new appreciation for life.

Because of HD, I think I have my life worked out. I know no-one is born with a guarantee of 80 years or more of life and good health. You could be hit by a bus tomorrow, or you could get cancer and die. I’m luckier than most, because I get an advance warning that I’m going to die early. I have my death sorted out. I will leave my family financially well off, with a Will, Power Of Attorney and Enduring Guardianship order in place. I have made sure everyone knows I love them.

Many people wonder about the meaning of life, they question what their role in life is and will they make a difference. I don’t have to ask these questions, as people tell me I have already made a difference.

I don’t treat HD as a social disease, and keep it behind closed doors, like some shameful secret. I tell everyone! I would have directly told about a thousand people about HD, including the hundreds of people I work with and eve­ryone I meet. Bit by bit, people are becoming more aware and knowledgeable of HD. In addition, I’ve also been on television three times, including local TV and A Current Affair, raising the profile of HD.

I get to experience and contribute in new situations, like giving this speech and participating in research. I participated in Sandy Taylor’s discrimination re­search. My husband and I just came back from Mel­bourne where we completed the first stage in the PREDICT-HD research study group. It was wonder­ful fun (well, maybe not the MRI).

My children have rewarded my open atti­tude to HD. I have three teenage sons, aged from 13 to 17. I’ve always told my children every­thing about HD and never kept my or their own risk factor a secret from them.

They don’t remember a time when my mother was well, they can only remember her with varying degrees of symptoms. They remember when we all went shopping together, it wasn’t my two year old that threw a temper tantrum demanding I buy something, it was my HD effected mother! They’ve seen her need help to shower, eat & dress. They’ve seen her behave inappropriately and violently. At present, they see her unable to recognise them and be unable to communicate with them. They’ve never judged her harshly or tried to hide her, they just ac­cept her completely.

My eldest hates being the centre of attention so much, he would have a panic attack if he had to go on stage to collect an award and he never puts his hand up in class for fear he might be laughed at. But this child stood up in front of his peers and told them all that he had the HD gene in his family, when his teacher enquired if anyone knew anything about HD. I am extremely proud of him. My second child had been dating his first serious girlfriend for several weeks and we told him he would need to tell her some time about HD and we would help him if he needed. My son happily reassured me he’d told her about HD ‘months ago’ before they’d even started dating. All three of them tell everyone about HD, with no sense of shame or embarrassment.

They know I’m about to show symptoms and they know what that means. They accept it with an admi­rable maturity. I’m very proud of them.

My HD status has proven to me that in general, most people are sympathetic and helpful with a genuine desire to do the morally right thing.

Of all the people I have told no-one has ever re­sponded badly. Twice people have referred a third person to me to give them info about HD.

I work as a policy consultant for Centrelink and I work alone with no-one to check my highly specialised and complex work. My replies to queries directly effects the payments welfare clients receive. I’ve discussed my HD status with Centrelink management and they have risen to the occasion brilliantly and per­fectly. They have no intention of demoting me or re­fusing to promote me. We have a very rational plan in place to manage the situation as I approach, and reach, the time my symptoms will appear. My HD counsellor, Winsome, was invited to participate in the discussion. In addition the staff have provided an en­viable support network for me while I was having the test and ever since. Only this week a colleague stated how hard it will be for them to see me go from the seemingly competent person I am now to having to leave work due to HD.

As I mentioned before, I’ve never had bad feedback from a person, ironically the only bad feedback I re­ceived, was from a medical board—the Red Cross refused to take my blood because I had the HD gene. It happened just after I started work with Centrelink. I don’t know how much you know about Centrelink, but one of the most common phrases used with clients is “if you don’t agree with the deci­sion, you can lodge an appeal against it”. It’s drummed into us constantly. So when the Red Cross doctor rang to advise me of their decision, I just auto­matically said “You’re wrong and I want to appeal that decision”. I reminded him that even if I had sex with him, traded blood with him, or if he grew in my womb - - I couldn’t give him HD. As you know, the only way I can give him HD, is if he gets my DNA by grow­ing from my egg. I’m pleased to say they changed their decision and I received an apology.

I don’t need to tell anyone here, that HD isn’t all good. It has many terrible, challenging issues, such as fear for our children’s future, fear for our own de­cline, fear about the nursing home - add to this our pain at having a lesser life span, a reduced quality of life, and no dignity in our death, it’s the stuff horror stories are made of. But there are worse things than HD:

q       I think, having a child die or be severely dis­abled is worse than HD

q       I think having a family member commit suicide, without leaving a note is worse that HD

q       I think watching the person you love die in front of you and be unable to help them is worse than having the HD gene

My family life with my parents and siblings is like a bad soap opera, one melodrama after another…. . domestic violence, family feuds, divorce, aborted and complete suicide etc. These are the things I consider to be the ‘difficult problems’ in my life. The things that could have been prevented. The worst thing that ever happened to me was when someone I loved and trusted took my mother out of the nursing home to see if he could go through with a murder/suicide plot. That person re­turned my unharmed mother to the nursing home but rang to ‘reassure’ me he could do it, then just hung up and left me to clean up the mess! Whenever some­thing bad happens to me now, I compare it with that event and say … well if I can survive that, I can survive anything. Trust me, HD is nowhere near as bad as that.

However, for all the bad things I’ve experi­enced I still count my blessings every­day. I have a husband I’m completely be­sotted with, three wonderful, healthy chil­dren and the most wonderful friends.

I’ve been with my husband for 22 years and I still get goose bumps when I see him. We still sleep holding hands. It still makes my day when I see him drive by unexpectedly. If I see him park his bus, I’ll still chase after it to get a kiss. (My friends just laugh at how pathetic I am to chase buses). I see the women around me and I know that what I have is very unique and spe­cial and I DO treasure it. My children are three strap­ping, healthy lads who also enrich my life immeasura­bly.

Dr Carl Kruzilnitski once said, “Imagine you have just been told you have three weeks left to live.  Then try and work out what you would do in those three weeks. Whatever your answer is, is the thing that’s im­portant to you”. My family is the thing that is important to me. Surprisingly, no-one mentions working overtime for their boss.

I don’t hate having HD. If I had a choice, I wouldn’t have it, but as I don’t have that choice I just accept it. HD is going to steal half of my life, so I refuse to give it the other half by being depressed and worrying.

There are only two things that really annoy me about HD: a) I wish I could grow old with my husband; and b) HD will take the best years of my life.

q       As you know, the life cycle of the parents is to work hard and scrimp and save so you can afford to raise your children. The children’s needs are invariably put first. However eventually, the children are sup­posed to leave home leaving the parents free to con­centrate on each other again and many parents choose this time to travel. I wish I could have that time with my husband.

It seems to me women spend their twenties trying to be everything to everyone; in their thirties they work out what they want for themselves; in their forties they go out and get what they want; and in their fifties they enjoy having it (and no doubt enjoy it even more because they finally don’t have to share it with their kids)!  My life keeps getting better as I get older. I feel more confident and in control. If I feel this good at 38, I imagine 48 must be even better.

So, in closing I would just like to say.

q       No one is perfect. Everyone has problems and by sharing stories we get a better perspective on our own problems. A problem shared IS a problem halved.

q       Problems that don’t kill you, WILL make you stronger.

q       Life DOES get better as you get older.

q       Challenge discrimination -  don’t let it stand.

q       There is more to Dianne Harris than just HD.

q       Have faith that mine is the last generation that will have HD.

q       Try and laugh as much as possible. Exercise your mind.

q       If you’re unsure if you want the HD test, then give yourself permission not to have it. The permission can be temporary or permanent.

I can’t control my HD. There is nothing I can do to effect it. The only thing I can control is my reaction to it. I refuse to let HD destroy any of my precious time before the HD symptoms appear

Thank you, for listening.

Because I’m a public servant any public speech I make has to be approved by the manager. My manager read my speech and was so moved by it he has sent it to the entire Centrelink network (with my hesitant approval). Many of these people are now sending that onto their friends and colleagues. I’m getting lots of supportive emails. I have to say this speech (my first,) has been a wonderful experience.

Dianne Harris