The life of a man suffering from Huntington's Disease, a genetic and fatal illness. Every child of a HD parent has a 50 % chance of suffering from this fatal degenerative neurological illness. This is the story of one such person.
Thursday, 18 October 2012
HD is a creature of habit
Friday, 12 October 2012
Transitions
So in some of the worst taste I've ever exhibited here (especially considering how much Jane dislikes not only their music but local Martin L. Gore in particular):
Monday, 11 June 2012
Been too long, Popping in with an update.
For two weeks my laptop is in the shop. The canister is used by the twins so I'm a bit uncomfortable using that for my personal writings. The problem is Blogger's mobile platform doesn't allow me to place embedded music videos so its going to be text for a while.
First, my friends Stella and Jan of HDTrainwreck are in my thoughts. Jan is having a bit of a crisis of Faith with all the destruction HD is causing around her. Both her sister and Father are suffering from this disease.
Jan went to the Las Vegas HD Convention this year on scholarship. Stella also applied but did not receive one.
I've been asked if I am going. A resounding NO! Perhaps it was seeing my mother suffer before killing herself. Perhaps it was seeing my grandfather succumb to the final stages of the disease, but I know where I'm going. Simply put I don't want to be around it anymore.
This isn't new to me, I considered going to a support group once. Just the idea gave me nightmares for a month. I think it's great for some people, I'm just not one of them.
Stella is still battling her depression. In terms of dealing with soft symptoms I feel like she's my soul sister. I was in the hospital for them myself last week. It stated innocuously enough. I was on Twitter and suddenly couldn't manage some basic functions. My brain was confusing the private message or DM function with the open communication mention function. Even after using the basic software almost daily for months my brain functioning simply forgot the difference. This caused my frustration and depression, all HD related, to skyrocket. Before I knew it, I was running around the block trying to get all these pent up feelings out. It didn't work.
So back to the hospital I went. Med adjustment time, again.
There went our vacation to Belfast. Corrine Kelly, our twins paternal grandmother, flew out to spend time with her two grandchildren from her late son , Dahy "David" Kelly. A friend of ours Dan G., and former co -worker of Dahy's, came up to help Jane and me while I was at hospital.
The poor man was served with divorce papers his third day here. Jane and I have opened our house to Dan but unlike Dahy, he doesn't like to commute to Los Angeles daily for work. I can't say I blame him. So after his work break he drove down to start on a new project. We're hoping we can convince him to come up on the weekends. We can always use an extra pair of hands and it must be better than sleeping in a hotel. Besides, we have better company, weather, and beaches than LA. His kids have playmates in the twins. We even have live fruit trees in our backyard. Oranges, apples, figs, tangerines, and lemons among others. What's there not to like?
This is my life the last couple of weeks. Thanks for stopping by to read.
Friday, 25 May 2012
Just Try
DJ was invited to sing at his vocal coach's recital in September. We are all very excited for him. She admitted that its not her practice to have first year students perform but she thinks he'll shine. The Ware house is very excited for him. Especially his sister Sasha who has been bragging to anyone and everyone who will listen.
We were actually a bit concerned about how Sasha would deal with all this attention on her brother. So far she's handling it well.
After some well placed phone calls, I was able to get through to her pairs coach. She had wondered why Sasha had stopped coming so suddenly, and why her mother never returned her calls after her missed lessons. I explained that Sasha had been with her father his last week, and soon after staying with us. Sasha's partner had already moved on to train with another girl. She's not working out well with him, and his mother said she'd much prefer to start him up with Sasha again. Now if we can only get her custom skates from her former home, that would be a blessing. If not, we'll take the money for her new skates from the estate her father left her. She had just finished breaking in her last pair, though, so we want to avoid that if possible. In the meantime I renewed her annual Figure Skating Club membership card so she will be able to test when she is ready.
Sasha's coach had expressed real sadness over Dahy's death. He had left a very favourable impression on her. Not just as a skating parent as a person in general.
The move looks like it will probably be a "go". A woman Jane knows from work wants a smaller house and with three children we need a bigger one. The plan is for us to pay the difference with a loan from her parents and then tie our mortgage onto the new property. The appraisers came earlier this week, and Monday we have an appointment to have the bank go over our new property.
To those of you who leave comments, they brighten my day. Thanks.
Tuesday, 15 May 2012
Introspection
Before I talk about my friend, first I want to discuss some sleep issues I have been having lately. For over two weeks I was averaging less than two hours a night. These two hours were so fragmented that cycle after cycle I was not entering REM sleep. A mind needs REM to properly sleep. A lack of it can actually cause psychosis. In my case, I nearly had a nervous breakdown. Last Monday I finally took so ill I ended up on the lawn slurring my words and my thoughts were completely fragmented.
While waiting for my psychiatrist to return my call, a friend recommended I call the man who last changed my meds at rehab. I did and he recognized my problem immediately. He put me on a low dose of the antidepressant impramine which I had been switched off when they put me on the Lexapro. We don't know why it took this long to effect me but the point is that less 48 hours later I had two full nights of uninterrupted sleep.
Ever since the ninth my wife and I have been in an extreme funk. It was also Mother's Day on Sunday here in America, and that is a reminder of my mum.Yes, I still miss her.
On the positive side, this was my wife's first Mother's Day since she became pregnant on the 5th of January as well as now being a mother to DJ and Sasha.
When I turned into this type of introspective and melancholy mood I began to ponder about the possibility of an afterlife. The more I've thought about it lately, the more I find my mind opening to idea there might be something out there I'm not ready to accept.
Now with Dahy gone, I do hope one day to be reunited with two important people in my life. To see him and my mum both healthy and no longer having to fight their respective illnesses and demons, well that idea brings peace to my heart. I mean dammit no one should ever have to suffer like they did. Would it be the end of the world if they could actually experience what "should have been" instead of their life just ending when they died. Is that too much to ask for?
Especially with the loss of Dahy I've begun to wonder about my lack in a belief in a god, much less all the anger I feel toward things like Huntington's Disease. Have I actually been blaming someone who may not even be responsible. Who ever said that a god is to blame for all the evil this world?
If anyone ever got the bad end of the stick in life, it was Dahy. Yet he still managed to find some peace of mind in his church. So do his children. In fact, just recently Sasha told me she looks forward to going to church because its where she feels closest to her father. I find that bizarre just based on her age. Seven year old's can't grasp the ideas around most of the rituals and god talk yet, so I think there is something else going on. I do know that she thinks that's the one place her dad always found his centre (as she calls it "his calm").
I once heard a Catholic Priest speak on evil and the bad things that happen to us. He said that evil was brought on when Adam and Eve committed their big sin. The kicker is that this man went on to say that many people are uncomfortable with the thought of God not stepping in at that time. However, if he had then he would have taken away their free will. If he took that away, Adam and Eve wouldn't have been made in his image. God did have free will, after all and he made man and woman, not robot.
So combine what would have been David's 39th birthday followed four days later by Mother's Day and its been a bit sad of a week. Not depressed. Just introspective and melancholy. Obviously I've been doing a lot of thinking too.
Wednesday, 2 May 2012
Cruel
While I'm on the subject of Depeche Mode, the day I wrote my last blog post I realized my information was a bit off. They were still here until that afternoon working on the new album, I literally missed them by half an hour in fact, being as I was downtown on other business. The same block as the studio. Rumour is that they will be coming here to work so we'll have to see if its going to be another Santa Barbara Sound Design LP like Playing the Angel and the (Bare) rerecordings were. Personally, I love the vibe that studio seems to send the band home with.
Thursday, 19 April 2012
Two Sleeping Children
For the second night in a row the twins were out cold before ten o'clock. Thanks to technology I discovered their father's key to getting them tired enough to sleep. Namely the one day he was on Twitter he had mentioned playing with them and then reading them a story, which they woke him up long enough to complete. Jane and I had been running on fumes since they came home so we figured it wouldn't hurt to play them to the point of exhaustion. It worked. We were tired, and they were sleepy. Aces in the hole!
Monday, 9 April 2012
Easter Monday
Their father had bought the outfits for them to wear during his last night at home. He hung up the clothes, gave each of his kids a kiss and went off to work. Somewhere in there he managed to drop a note into each of their pockets.
My wife was getting their clothes ready when she found the piece of paper in DJ's pocket. She opened it, read it, put it back and started sobbing. Its been that kind of weekend.
Thursday, 5 April 2012
Double Trouble
Dahy's twins are currently staying with us. They are rambunctious and filled with energy constantly, just like their father. They're wonderful children and its nice to have them around when they aren't in school. It also makes it harder for me to drink because one of my steadfast rules has always been that I don't drink around children. Even in my worst when I was climbing up freeways hoping a car would run over me, even then I wouldn't drink around my sister or any other children. I can't count the times I dropped my little sister off at the neighbours just so I could get loaded. Its a lot like the way Dahy would drop off the twins at my home when they were babies, now that I think about it.
On a more cheerful note, because I really don't feel that down in the dumps even if it seems like it, Depeche Mode is back in the studio. Yeah! Now if we can just drag Human League back there as well I would be really happy.