My turn to be the test subject

Today I enrolled in Enroll-HD


It felt good to do something about this horrible disease. I am now part of the family participant control group. 

I gave blood, did some cognitive tests and some physical test. I get to do this once a year. My results will be used to track my decline in cognitive and physical function over time. Hopefully due to regular normal aging processes. This will be used as a comparison with the HD participants.

Everyone I dealt with was incredibly positive about the future. Particularly the clinical trials currently happening on gene silencing.

And I will admit it. The science nerd in me thinks it’s pretty cool being in the control group.

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Having HOPE for my boys

So it’s HD Awareness Week/Month and I have been sharing some old posts and claiming I’m too busy to write new ones. That is only partially true. The truth is these are hard to write. The whole thing is hard but for me sharing helps.

My biggest worry at the moment is my kids, Noah and Luc. They are wonderful human beings but they are also teenagers. They grunt, they fight with each other and us, they claim we don’t listen and that no one understands. They are riding the hormone fuelled emotional roller coaster that is puberty. They have the normal teenage pressures but they also have a dad with a degenerative neurological disease and there is a 50/50 chance they could have the same.
We have no point of reference for this. Kev’s mum did not know this was in the family. It only came to light when Kev, the youngest of his siblings, was in his early 20s. He did not have to do his teens with this hanging over his head. He had life experience when faced with the possibility of having inherited this. He was an adult prior to having to watch his mum be symptomatic. My kids are 10 years younger than he was when the spectre of HD raised its ugly head.

As my boys watch their dad deteoriate, will they have the emotional maturity to deal with it? Will they have the life experience to deal will the fear of inheritance? Will they get into a negative head space and become pesimistic about their future or remain positive and optimistic? The teens are fraught enough without adding this.

Kev’s attitude to life definitely helps all of us. He is mostly positive, and rarely dwells on his prognosis. “It is what it is. Shit happens and life goes on,” often escapes his lips. 

The future for treatment looks bright and we point out the trials that are running and the advances that are made to the kids all the time. We take them on the hospital visits to speak with doctors, nurses and social workers. Hopefully this helps a little. 

For the rest, the gaps, I have to be the emotional compass, be the strength they may not yet have and lend them some emotional maturity so they can make it through theirs teens and live their lives with HOPE.

Thank You does not seem enough

How do you measure a person’s worth? There are more ways to measure this than I can count and 1000’s of years of philosophical, economic and theological debate on the subject.

This month I have come to the conclusion that a person’s worth is measured by the deeds they do and friends they have. Kevin and I have amazing friends. They are giving, kind and generally AMAZING. They have given up their weekends, some everyday of every weekend for a month to transform our yard so Kev can continue to use it as his health and mobility decline.

I am not comfortable asking for help. I am incredibly independent. It is hard for me to admit that I cannot manage by myself. Don’t panic. For the most part, we are doing fine. However, our yard was a mess. A retaining wall had fallen down and the slope and stairs are not conducive to a person with mobility issues.  See the before pictures:

Before

Before: The steps

Before

Before: The Entertaining Area (Sarcasm)

Before

Before: The Garden (Sarcasm)

Before

Before: The Retaining Wall

I was telling our friend, Jackie Brown, about getting someone in to fix the wall. Jackie informed me that there were a number of people who had been asking her how they could do something for Kev and this would be something they could do. My immediate reaction was no way.

It took me a long time to agree to Jackie’s plan but eventually I caved in. She can be very persuasive. So we developed a plan and I put it out on Facebook.  This is what happened:

During: Jack Hammering out the steps

During: Jack Hammering out the steps

Demolition

Demolition

During: Retaining Wall Construction

During: Retaining Wall Construction

The wall grows

The wall grows

The rubble pile grows

The rubble pile grows

Just like an ant colony

Just like an ant colony

Construction begins

Construction begins

Where did all that rubble go?

Where did all that rubble go?

Wall complete

Wall complete

The cement arrives

The cement arrives

Screeding (is that a word)

Screeding (is that a word)

Form work

Form work

Concrete finished.

Concrete finished.

Framing up

Framing up

Construction begins

Construction begins

The bones are up

The bones are up

The Deck nearing completion

The Deck nearing completion

The roof goes on

The roof goes on

The undercover entertaining area

The undercover entertaining area

Planting

Planting

Mulching

Mulching

As you can see, there has been an amazing amount of work done. We have discover that our friends are the most valuable of assets that Kev and I have. We know have a low maintenance yard that has disabled access.

The yard is looking great

The yard is looking great

The beginnings of a hedge

The beginnings of a hedge

New clothes line and grass not weeds (Honey is a little unsure of the new grass)

New clothes line and grass not weeds (Honey is a little unsure of the new grass)

Garden finished

Garden finished

Almost finished

Almost finished

Almost there

Almost there

I will never be able to thank all of those who came and helped.  Many of you commented that this is what our community should be like.  There is no SHOULD. This IS what our community is like.  You are generous, hard working, beautiful people. Thank you seems so inadequate. I will try and acknowledge all of you but first I need to acknowledge a few people for going above and beyond.

Firstly, Jackie and Ian Brown. We are incredibly lucky to have you in our lives. Thank you for being the driving force behind this. It would not have happened without you. I don’t know what I did in a past life to deserve you guys in this one but it must have been good.  As a side note, I highly recommend getting at least 1 ‘doer’ in your friendship group. It also helps if they are an ‘organiser’ as well.

Next, Glen and Karen Craft. Thank you for being Kev’s voice of reason as his frontal lobe functioning diminishes. I will be forever grateful to you for having our back.

I also need to thank Geoff Piper and the Piper and Texieria families. What can I say? You have turned an area that I thought Kev would eventually be unable access into a space he will be able to use for a long time. Thank you for your expertise and back breaking work in concreting and brick laying.

The rest of you all deserve your own paragraph but I will be here forever. So a massive thank you to all of those who helped, whether is person or in the form of sending food or alcohol. You are all amazing and are listed here in alphabetical order:

Kristie Beedie

Michael and Leanne Brake

Biscuit Briscoe

De and Ian Backhouse

Brian and Angel Bowman

Lisa Budden

Kaylan Craft

The Davis family

Donna and David Drain

Joe English

The Erler family

Shelley Fay

Shari Fox

Jason and Helen Hedley

Beorn Hulme

The Kanaris family

Glen Milligan

Belinda and Darren Monkman

Matthew Morgan

Louise and David Morgan

The Moss family

Nathan Oliver

Monique Piper

Andrew Ramos

The Reynolds family

Gary Richards and Niki Kallenberger

Heike and Ben Roberts

Lucie Robson

Jan and Ross Smith

The Rudd family

Mick Souter

The Stutchbury family

Wayne Thomas

Greg Watson

Molly and Demi Westwood

John White

Clearly Kev and I have have done something right along the way. We are blessed to have so many generous people in our lives.

THANK YOU, THANK YOU, THANK YOU.

What would change if you knew how you were going to die?

Last week we (Kev, Noah and Luc) went to a screening of a documentary called Twitch. This documentary follows 18 year old Kristen Powers as she undergoes testing for the HD gene.  Kristen was at the screening and Luc was very excited as he had only recently watched her TEDxTeen talk.

WARNING:  SPOILER ALERT.  I GIVE AWAY THE END.

As a family, we had admired Kristen’s attitude from her TEDxTeen talk. The idea that you have to live for today because you don’t know what tomorrow will bring is one we have tried to instil in our boys. Along with the concept that you have a choice to make a positive impact on this world or not.  Your actions and not your words are the thing that will determine this. Here is a girl, threatened with her own mortality who chooses to do good, and leave the world a little bit better than how she found it. I hope that this is what I am doing through my career in education, it is what Kev was doing through his and continues to do through his relationships. It is what we hope our boys will choose. They seem to be on this track, currently it is through their music.

Like Kev, Kristen’s mum did not know about her family’s genetic history and her mum suffered from misdiagnosis as Kev’s mum did (a post for another time I think).  Like Kev, Kristen was tested at a young age. I have written about this before: Would you want to know?

But Kev’s test was positive for the HD gene. It was interesting listening to Kristen talk about her choices after the screening.  She had made a list of things that she had wanted to do if her diagnosis was positive.  She did not want to waste any time.  Interestingly, she is following the time frame she set herself despite her outcome.

This got me thinking. Would Kevin have done anything differently if his results were different?  It is my honest belief that the answer is no. Being faced with a disease like HD and its long term outcome makes you look at life differently regardless of your gene status. Knowing that life is a 50:50 lottery in all things, not just your gene status, changes the way you view life.

This can bring about positive choices or negative ones.  But are they different to what they would have been without knowing or with a different genetic outcome? My confidence in my answer, no, strengthens everyday.

Another thing that struck a nerve was Kristen’s adamant stand against having children if she was gene positive. Although, she did say that even now, she is still considering whether she wants a family – giving further evidence to my theory that nothing would be different.  I would have liked to ask her if she thought this decision may have been different if her mum had known about HD before she showed signs?  If she would have a different opinion if her mum had been appropriately medicated from the start and her psychological symptoms were controlled better?  Hindsight and all that jazz.

As you all know Kev & I decided to have kids. Kev had grown up with friends who did not make it to adulthood due to disease or accident and we knew that babies don’t come with a written warranty for 80+, happy, healthy years.  The decider for us came when I asked Kev:  if you had a choice to be born, live a life then suffer from HD or not be born at all, which would you choose?  Which would you choose?

Kristen also talked about relationships in her documentary and in the Q and A afterwards. She said several times that she would not want to ask someone else to care for her when she could not care for herself. This sparked a nerve with me. Kev had often said this to me after his positive gene test. But I would like to say to anyone out there with a degenerative disease the same thing I said to Kev. YOU DON’T GET TO ASK! THE PEOPLE IN YOUR LIFE GET TO CHOOSE.  All life situations have choice, you can not attempt to control the choices of those around you. They have a choice to go or stay. You don’t have a right to choose for them.

Free to ChooseWhich brings me to the point of this post. This year, I have been trying to take “I have to” and “I need to” from my vocabulary and replace it with “I choose to”. This has led me to question my choices. How many of the choices we make are determined by who we are and what we have faced or observed others face? Would these choices change if you knew how and when you would die? Should it make a difference?

Remembering for two

Memory has always fascinated me. What triggers a memory? Why do we hold strange snippets of events so closely while other details fade away? Lately I’ve added: Why is HD taking Kev’s short term memory away?

Last night sounds and smells dropped me right back in 1990. The year I turned 21. In particular, songs, written and performed by some old friends, in a pub that reeked of stale beer. (Aahhh how’s the serenity?) The memories started with a room full of familiar faces, all a little bit rounded and some with a little less hair and a lot more grey. Then there were the songs and remembering all the words. Finally, Perfect Wave, not a metaphor, but a song (click on the name to hear the song in Soundcloud). Which meant I was dancing with Kev and the memories flooded back. Just like old times, Kev was the first one up to dance and we were reminded of wonderful memories of a relatively carefree time in our lives shared with some outstanding people who we don’t see enough of now.

2015/01/img_3940.jpg
Unfortunately, Kev may not remember last night. Those memories might not make it to his long term memory. But I always try to find the upside. The upside of memory loss in HD is that it only takes short term memories. So the wonderful memories I recalled from last night were also recalled by Kev and will hopefully continue to be. So much of that time is wrapped in music and the smell of stale beer (but the stink of cigarette smoke has been eliminated). Although he is likely to forget all about last night. The CDs we bought might help, music seems to have that effect on his memory recall and if all else fails, I’ll just have to remember for him.

2015/01/img_3932.jpg

Some personal truths and NY resolutions

I debated about sharing this. I write stuff down to help process it. Some I share but most I don’t. I have decided to share this in an effort to be accountable to my New Year’s resolution.

My sister visited over Christmas. She is a psychologist. It is very easy to hide from your psychologist sister when she is about 2500 km away. Not so easy when she is in the same room. She called me out on 2 issues. The first is my sleeping patterns. I average about 6 hours a night. Apparently this is not enough. The second is the time I spend on social media and how I use it to avoid what’s happening around me – this one was tough to hear.

Some background (for those who don’t know), my life is … challenging. My husband, Kev, has a degenerative neurological disease (HD). (Check out the rest of the posts on the blog.) While he is still independent and functioning well, his disease has taken some of his higher order cognitive ability, his short term memory and has made him anxious in high stimulus, pressure situations. He can no longer work and has great difficulty with most household tasks – the worst being grocery shopping and cooking. Even with a list, he can’t keep a single item, let alone multiple items in his head long enough to find them on the shelf. So shopping becomes a marathon of him reciting an item in his head over and over while he walks aisle after aisle to find it. Then he moves onto the next item and repeats the process. Add to this all the distractors in a supermarket and you have nightmare territory of stress and anxiety for someone with short term memory issues. As he has to work so hard to do this and part of his disease has an uncontrolled movement component, this is exhausting and requires him to sleep/rest for hours afterwards. Most tasks are like this. I tell you this so you understand why I am responsible for about 90% of household tasks and organisation.

We have 2 teenage boys who are heavily into music and sport. They play baseball for a club in Wollongong and a club in Camden and both have music lessons, auditions, rehearsals, etc as well as all that teenage social stuff to be a part of. This is a logistical nightmare requiring hours away from home driving to training, games, events, etc. They are happy and active and enjoying life while doing all of these things. Given their situation, it is important to me that they have as normal a life as possible. I am lucky to have great friends who help with all of this.

Professionally, I have had an amazing 12 months relieving as Teacher Quality Advisor for the NSWDEC, out of the classroom. I feel professionally refreshed and excited about teaching again. This has come at a cost. I have had to work office hours. As a teacher, I worked long hours but could leave at 3.00 to do the kid stuff then work at night. This has not been possible this year. I have also had to travel and stay away from home on numerous occasions. This has placed a greater burden on Kev. He has coped well while I’m gone but he crashes (both physically and emotionally) on my return.

Which brings me back to sleep and social media. My life is incredibly busy. I talk a good game and outwardly put on a brave face. Part of this is making sure I exercise. I get up early to fit this in. However, when things are complicated and I’m overtaxed for time, I just get up early to get things done, normal household things. Hence, my lack of sleep. Easy, just outsource a few tasks, make the kids do more and go to bed earlier. Sorted! (bahaha – who am I kidding)

When life is at its most stressful and I feel completely overwhelmed, I tend to disengage by reading or spending time on Facebook and Twitter. I claim that reading turns my brain off and allows me to escape and social media keeps me connected to my friends and colleagues in my time poor existence and that it improves my ability to do my job well. It does. Right? But at what expense? (I should also resolve to go a day without attempting to rationalise my behaviour to myself and others.)

When my sister pushed me on this, I argued with her about it, I denied I was ‘addicted’ to social media – I don’t think I am. And its OK to pick up a book and ignore everything else until your finish it. Everyone does that. But I am definitely using these things to avoid aspects of my life. I am using it to avoid being present with those close to me because often it is just too hard to accept what my situation has become and will continue to become. It helps me remain in denial. (Did I just give the classic definition of what an addiction is?) I have always tended to avoid putting effort into tasks to negate my fear of failure. If you don’t try, you can’t fail or at least have a justification for your failure that is not linked to your lack of ability. This tactic works particularly well for learning to drive and relationships. (Insert sarcasm sign here) I have always run away from the difficult emotional stuff. Maybe my inadequacies in being a good wife, mother, daughter, sister and friend are because I’m afraid of investing all my emotional energy into it and still being inadequate.

I can’t avoid it any longer. In the not too distant future, I will not be able to do it all and I definitely can’t have it all. I can’t hide from the most important people in my life. I can be present NOW, while it is still possible to do and have most of it.

So this New Years Eve my resolution is to be less connected with all of you so I can be more connected with myself and my family. While a real person is in the room, I will not be in a virtual room. They need me and I can’t hide in my cyber-world avoiding them and that emotional roller coaster any longer.

For 2015 my wish for all of you is that the important people in your life are present and that you can get all that you need to be happy, healthy and whole.

Thank You (but I may never walk again)

About 2 years ago I decided that I needed to look after myself better.  I likened it to the emergency drill on the plane.  I needed to put my oxygen mask on first to be able to help those around me do the same.  To that end, I started to exercise and put myself on a diet.  I did pretty well on my own, lost some weight and got myself up to running 5 km all be it very slowly.  But then I got shin splints and stopped … everything.

In December this year, after putting all the weight back on, I decided to join a fitness group that a number of people I knew went to.  It was the Christmas holidays and I had time during the day.  I wasn’t sure if I could maintain it going back to work but seven months down the track, I’ve lost most of the weight again (10 down 5 to go) but more importantly I am much fitter.  I’m not running, the shin splints returned, but I am doing cardio and weights so I feel stronger. While everyone around me got a cold this year, my immune system has held.

Mt Keira 2

Before Boot Camp

But this is not the best part of taking this step.  The best part is the people that have come into my life.  Jules Verheyen, her husband Rob, her trainers Mark and Bec and the fitness family that they train are amazing.  They are inclusive and supportive of everyone they train, way beyond the classes they run.  I was impressed when they did a major fundraiser for Lizzy as she battled breast cancer.  What I didn’t expect was that they would lend the same support to me.

Mt Keira 3

Tim Team. Winner, Winner, Chicken Dinner

As Jules gradually gathered information about my situation, she decided that her next fundraiser would be for Kev.  A Bootcamp through Mt Keira.  Designed and coordinated by Mark and Bec. The Jules Fitness family paid $10 each for the chance to bush bash up hill and down dale.  Through creek beds, on deer tracks, bike tracks and tracks Mark slashed through the lantana just days before.  All money raised to go towards our US trip.  Although I will be giving some the the HD Association towards the respite camp Kev attended.

MtKeira1

Leo’s Team. I prefer 2nd place to last.

I am sore from head to toe, I don’t think I will be able to walk tomorrow and my hand still tingles from the stinging nettles but I had a great time.  That’s right a great time. And I was on the winning team.  Go Tim’s team!

I want to say a big thank you to Jules, Rob, Bec and Mark as well as everyone who came along this morning.  I am a little bit overwhelmed by it and so is Kev. We have decided to put it towards hiring Kev an electric bike to ride across the Golden Gate Bridge.  He was determined to do it on a push bike but this will make this day trip a whole lot easier for him (and rest of us).

If you are looking to get fit and live in the Figtree area, I highly recommend Jules Fitness.  Just click on the link to go to the website.  They go way beyond fitness for the people they train.  I have to say signing up has been one of the best decisions I’ve ever made.