Had a shocker of a weekend. In short, have been let down or left behind by a lot of people, for all different reasons. The worst of it was a visit to hospital at 1am until 8am when a friend stupidly got hit by a car and fucked up his foot. I got abused, hit, spat on and generally had a horrible time, only for him to not appreciate it the next day and go drinking all that day and night. So I pretty much wasted my time making sure he was ok...
I was too exhausted on Saturday to go a friend's 21st, as well as go out after that (as I'd promised) to see some friends I haven't seen in ages. So I stayed at home on Saturday night, went to bed early (10am) and caught up on some sleep.
It literally amazes me how many things have gone wrong for me this year, in all aspects of my life - personal, family, work, friends. In varying scales.
And today, mum comes in and tells me that Dad's gotten a lot worse suddenly - he's lost strength in his arms, and he's worried about going to New Zealand. They leave in a little over a day.
I'm even closer to breaking point.
I've tried to be so strong, but it doesn't seem to matter. Stuff just keeps on happening, and I can't control it. I can't stop it. I can do amazingly nice things for people (like fucking go to hospital with them in the wee early hours of the morning in the scariest hospital in Sydney) and it all goes back in my face.
I don't know if I can take much more.
Any more really. I just don't get it. I'm such a good friend - I'm loyal, forgiving, giving etc.. And hardly anyone cares. This isn't being emo. This, unfortunately, is how it is.
The bottom line is that you only ever count on yourself.
But right now, I can't keep being strong. I just can't. It's too much.
Monday, March 17, 2008
Friday, February 29, 2008
Small Win for MND
Below is an exciting news article on research (FINALLY) findings on Motor Neurone Disease. There is so little known about this disease, so a finding like this is massive.
For me personally, I have to consider the remote possibility of developing MND. Whilst it seems highly unlikely that my father has the genetic form of the illness, as nobody else in our family history has had it, there is still a possibility.
I would imagine that in the future, a test will be developed where they can see if someone has high levels of those proteins etc etc. As soon as that is available, I will of course take the test.
from http://www.smh.com.au/news/science/gene-flaw-finding-brings-hope-for-neurone-sufferers/2008/02/29/1204226941283.html
SYDNEY researchers have discovered a genetic mutation that causes motor neurone disease, raising the prospect of better diagnosis and a treatment for the fatal paralysing condition.
About one in 5000 people over 50 develop the disease, with most dying within three to five years, apart from rare exceptions such as the physicist Stephen Hawking, whose nerves have been slowly degenerating for more than 40 years.
A team led by researchers at the ANZAC Research Institute at Concord Hospital studied the DNA from more than 500 people with the condition, including an Australian family with at least six members affected and more than 20 of their relatives in Britain.
The team's leader, Ian Blair, said they were excited by the find, which was the culmination of a 10-year project. "This will have crucial implications for understanding motor neurone disease as a whole."
The disease causes the death of nerves that extend from the brain and spinal cord to all the muscles of the body that control the ability to move, breathe, eat, and drink.
About 10 per cent of cases run in families, while the other 90 per cent occur sporadically, mostly later in life. All people with the disease have high levels of a misshapen protein, called TDP-43, in their nerve cells. But it had not been known whether the protein was good, bad or indifferent, or there because it was killing the cells, trying to help repair them, or for some other reason.
The mutation was found in the gene that produces this protein, said Dr Blair, whose study is published in the journal Science. "We've found the smoking gun. We now know this protein truly does play a role in the disease."
Although the specific mutation identified was rare, it caused both inherited and sporadic cases, which meant the TDP-43 gene was implicated in all cases of motor neurone disease, the researchers said.
Understanding how the protein it produced became toxic and killed the cells could lead to a much-needed treatment.
For me personally, I have to consider the remote possibility of developing MND. Whilst it seems highly unlikely that my father has the genetic form of the illness, as nobody else in our family history has had it, there is still a possibility.
I would imagine that in the future, a test will be developed where they can see if someone has high levels of those proteins etc etc. As soon as that is available, I will of course take the test.
from http://www.smh.com.au/news/science/gene-flaw-finding-brings-hope-for-neurone-sufferers/2008/02/29/1204226941283.html
SYDNEY researchers have discovered a genetic mutation that causes motor neurone disease, raising the prospect of better diagnosis and a treatment for the fatal paralysing condition.
About one in 5000 people over 50 develop the disease, with most dying within three to five years, apart from rare exceptions such as the physicist Stephen Hawking, whose nerves have been slowly degenerating for more than 40 years.
A team led by researchers at the ANZAC Research Institute at Concord Hospital studied the DNA from more than 500 people with the condition, including an Australian family with at least six members affected and more than 20 of their relatives in Britain.
The team's leader, Ian Blair, said they were excited by the find, which was the culmination of a 10-year project. "This will have crucial implications for understanding motor neurone disease as a whole."
The disease causes the death of nerves that extend from the brain and spinal cord to all the muscles of the body that control the ability to move, breathe, eat, and drink.
About 10 per cent of cases run in families, while the other 90 per cent occur sporadically, mostly later in life. All people with the disease have high levels of a misshapen protein, called TDP-43, in their nerve cells. But it had not been known whether the protein was good, bad or indifferent, or there because it was killing the cells, trying to help repair them, or for some other reason.
The mutation was found in the gene that produces this protein, said Dr Blair, whose study is published in the journal Science. "We've found the smoking gun. We now know this protein truly does play a role in the disease."
Although the specific mutation identified was rare, it caused both inherited and sporadic cases, which meant the TDP-43 gene was implicated in all cases of motor neurone disease, the researchers said.
Understanding how the protein it produced became toxic and killed the cells could lead to a much-needed treatment.
Life Update
Everything has been a bit back and forth. My mother has been TRYING to get Dad to agree to go to New Zealand on a holiday. He says yes, they get their passport applications, then he changes his mind saying he doesn't want to go there because he won't be able to do anything. Was extremely difficult for my mother - they had planned to go to Europe after my sister and I finished highschool, but with my father's diagnosis, that is out of the question. So she's been brainstorming places to go.
They are limited by the fact that he can't visit places that are really warm as the heat exacerbates his symptoms making him extremely uncomfortable. So NZ is a great choice - the flight isn't too long, perfect temp range, and good medical access etc (as opposed to say Thailand I mean).
So as per previous post, the update on this situation is that a mutual friend who they've known for 20+ years, and who happens to work with my dad, talked to my Dad and finally convinced him to go. Which is awesome!
And gooderer news again on this side of things... So my father has been quite depressed, understandably. I get quite resentful of the fact that he doesn't seem to make the most of the time he has left with us - i.e. he could try and pretend to be happy at times. I don't mean to sound selfish in saying this, but it would be very sad if after he passes, I look back on his last years and only remember him as being miserable.
So he went on a helicopter flight that we bought him for Christmas, and he enjoyed it so much that he's paying for my family (mum, him, sister and myself) to go on one together.
He has NEVER done anything like this. He's quite frugal, and certainly never goes all out like this. For me, this means he does, in a small way at least, recognises the importance of doing what we can, while we can.
so i'll be flying over sydney next saturday with the fam. Afterwards, we're going out to lunch in the city somewhere nice. So there's one good thing.
They are limited by the fact that he can't visit places that are really warm as the heat exacerbates his symptoms making him extremely uncomfortable. So NZ is a great choice - the flight isn't too long, perfect temp range, and good medical access etc (as opposed to say Thailand I mean).
So as per previous post, the update on this situation is that a mutual friend who they've known for 20+ years, and who happens to work with my dad, talked to my Dad and finally convinced him to go. Which is awesome!
And gooderer news again on this side of things... So my father has been quite depressed, understandably. I get quite resentful of the fact that he doesn't seem to make the most of the time he has left with us - i.e. he could try and pretend to be happy at times. I don't mean to sound selfish in saying this, but it would be very sad if after he passes, I look back on his last years and only remember him as being miserable.
So he went on a helicopter flight that we bought him for Christmas, and he enjoyed it so much that he's paying for my family (mum, him, sister and myself) to go on one together.
He has NEVER done anything like this. He's quite frugal, and certainly never goes all out like this. For me, this means he does, in a small way at least, recognises the importance of doing what we can, while we can.
so i'll be flying over sydney next saturday with the fam. Afterwards, we're going out to lunch in the city somewhere nice. So there's one good thing.
Saturday, February 23, 2008
Still waiting
So this has been a particularly eventful and difficult week. My parents have been planning on going to New Zealand together. It can be hard to find places to travel to, Dad's quite affected by warm weather so it has to be somewhere cool/cold, and also need the flight to not be too long as it can get highly uncomfortable for him. Now he's always been stubborn, but it seems that dealing with MND has exacerbated his more negative traits, stubbornness included. My mum always hoped that they would travel Europe after my sister and I finished high school, so having to settle for New Zealand instead is difficult. Instead, he's been completely opposed to the idea, and she's been struggling with it.
And she couldn't handle it. When she's sacrificing so much, and asking so little, it would be nice if he could something nice for her. So tension was rising. Then there was an article on A Current Affair about a young mother of 2 with MND, and even those who don't know anything about it would be affected. I sobbed and sobbed, in a very cathartic way which was good in a way. My sister, as usual, didn't want to know anything about it, my mum watched it and pretended everything was ok, and my dad wasn't interested. It's interesting how this example shows so much about how we are all dealing with it.
Anyway, they replayed it on a breakfast TV show, and this time it finally got to Mum - added in with her anger at my father. So she informed a mutual friend about it, and apparently he had a word with my Dad and he finally decided to do it. So there's something, resolved, about that situation. I won't say good, because it was about bloody time that he did it.
Otherwise, he's starting to lose strength in his fingers. After chopping vegetables for dinner one night, he found he had difficulty signing his name at work the next day.
And he's recently informed us that he won't give up work until he falls, which infuriates me. Not only is he using up strength that he could be using so he'd have more energy with his family now, but in the event of him injuring himself at work it means that it'll a) take him way longer to repair than the average person b) make him even less mobile than he should be at the stage. Fucking ridiculous.
I'm struggling at the moment. Moods all over the place. Generally sad in a hidden way, but I have some good stuff happening for me, which keeps me vaguely positive. The way my moods come out is more me just being rude and patient, and naturally the worst of those moods are inflicted upon family.
I've been having those days that I have occassionally where the only thoughts that run through my head is "this isn't going to get better". I don't know how to get over that - how the hell do you accept the fact that stuff really sucks, and it's going to get worse. I mean, I've suffered from severe depression in the past, and people would tell me (not that I believed them at the time) that things would get better. And they did.
In this case, things getting better is a long way off, and nothing will ever be the same. Eventually when he passes, time will continue on and I will accept and move on to an extent.
But when I get married, I won't have my own father to walk me down the aisle. When I have children, I'll have to explain to my kids why they don't have a grandfather on one side of the family. There will be a constant lack, perhaps not imposing at all times, but a lack, always.
My friends don't know what to say. There are a couple of approaches in talking about it with me:
1) Listening. Offering minimal input and just listening. This is the most rare approach I've encountered
2) Optimistism. Telling me that maybe medical advances will save him. There is ONLY ONE thing that works, Rilutec or however it's spelt, and it made him worse. Anything that they're developing now will be too late, at least 5-10 years down the track after all the testing and development. this is the most common and infuriating response because it means they haven't fucking listened. When I say my father has a terminal incurable illness, I mean it. Don't tell me otherwise - it doesn't comfort me, it just makes me really angry. I should NOT have to explain that bullshit to someone. I want to talk about how I feel, not make somebody else feel better.
3) Telling me about other people whose parents have died. SMOOTH FUCKING MOVE. How the fuck is that going to make me feel better?
4) Telling me I should make the most of everything, and completing negating the fact that the illness, right now, is the least of my concerns. What I struggle with is the changes occurring in my family. I can't cope with that. I don't want to be at home, and that makes me feel guilty. When I am home, I can't handle it so I'm rude and closed off. If I could make the most of everything, I would. But he's pushing everyone away, and never tells me what's happening with him and his MND
5) Not mentioning it at all because they're too uncomfortable. This, surprising, is ok with me, because at least they're being honest. We all have different friends for different things, so I'm fine with having friends who know but don't talk about it with.
This is all I have for now
And she couldn't handle it. When she's sacrificing so much, and asking so little, it would be nice if he could something nice for her. So tension was rising. Then there was an article on A Current Affair about a young mother of 2 with MND, and even those who don't know anything about it would be affected. I sobbed and sobbed, in a very cathartic way which was good in a way. My sister, as usual, didn't want to know anything about it, my mum watched it and pretended everything was ok, and my dad wasn't interested. It's interesting how this example shows so much about how we are all dealing with it.
Anyway, they replayed it on a breakfast TV show, and this time it finally got to Mum - added in with her anger at my father. So she informed a mutual friend about it, and apparently he had a word with my Dad and he finally decided to do it. So there's something, resolved, about that situation. I won't say good, because it was about bloody time that he did it.
Otherwise, he's starting to lose strength in his fingers. After chopping vegetables for dinner one night, he found he had difficulty signing his name at work the next day.
And he's recently informed us that he won't give up work until he falls, which infuriates me. Not only is he using up strength that he could be using so he'd have more energy with his family now, but in the event of him injuring himself at work it means that it'll a) take him way longer to repair than the average person b) make him even less mobile than he should be at the stage. Fucking ridiculous.
I'm struggling at the moment. Moods all over the place. Generally sad in a hidden way, but I have some good stuff happening for me, which keeps me vaguely positive. The way my moods come out is more me just being rude and patient, and naturally the worst of those moods are inflicted upon family.
I've been having those days that I have occassionally where the only thoughts that run through my head is "this isn't going to get better". I don't know how to get over that - how the hell do you accept the fact that stuff really sucks, and it's going to get worse. I mean, I've suffered from severe depression in the past, and people would tell me (not that I believed them at the time) that things would get better. And they did.
In this case, things getting better is a long way off, and nothing will ever be the same. Eventually when he passes, time will continue on and I will accept and move on to an extent.
But when I get married, I won't have my own father to walk me down the aisle. When I have children, I'll have to explain to my kids why they don't have a grandfather on one side of the family. There will be a constant lack, perhaps not imposing at all times, but a lack, always.
My friends don't know what to say. There are a couple of approaches in talking about it with me:
1) Listening. Offering minimal input and just listening. This is the most rare approach I've encountered
2) Optimistism. Telling me that maybe medical advances will save him. There is ONLY ONE thing that works, Rilutec or however it's spelt, and it made him worse. Anything that they're developing now will be too late, at least 5-10 years down the track after all the testing and development. this is the most common and infuriating response because it means they haven't fucking listened. When I say my father has a terminal incurable illness, I mean it. Don't tell me otherwise - it doesn't comfort me, it just makes me really angry. I should NOT have to explain that bullshit to someone. I want to talk about how I feel, not make somebody else feel better.
3) Telling me about other people whose parents have died. SMOOTH FUCKING MOVE. How the fuck is that going to make me feel better?
4) Telling me I should make the most of everything, and completing negating the fact that the illness, right now, is the least of my concerns. What I struggle with is the changes occurring in my family. I can't cope with that. I don't want to be at home, and that makes me feel guilty. When I am home, I can't handle it so I'm rude and closed off. If I could make the most of everything, I would. But he's pushing everyone away, and never tells me what's happening with him and his MND
5) Not mentioning it at all because they're too uncomfortable. This, surprising, is ok with me, because at least they're being honest. We all have different friends for different things, so I'm fine with having friends who know but don't talk about it with.
This is all I have for now
Monday, January 21, 2008
Is this the day it all changes?
I've found MND to be a disease of small steps. I find myself waiting for the next stage to come, and each time I think I will deal with it differently.
Right now my father is at a point where he has no core strength in stomach. This makes very simple tasks such as standing upright very difficult. If we talk to him while he is standing, we find that we need to repeat ourselves. For a couple of weeks, before we decided to ask, we thought it was because the MND was affecting his brain, for example his memory. The family had a chat with him a couple of nights ago, and we found out that sometimes he has to concentrate so hard on controlling what muscles he has left in order to stand upright, that he doesn't hear what we say, and therefore asks us to repeat ourselves. This is therefore not a case of losing memory, but rather a case of distraction.
Today we have some tradesmen installing doors downstairs. I feel that this is the start of the disease being more visible.
We have a two storey house. We moved into our current house when I was 8 years old, and it was a single storey red brick house. Over the years, we renovated it, adding an additional level and essentially changing the entire house - cement rendering on the outside, new carpet, knocking down walls, wooden floorboards etc. When we first moved in, what is now our dining room was my parents room.
When we renovated, we knocked down the wall seperating the living room from my parents room to create a living room that flowed into the dining room.
We are now building doors to seperate those areas again, so when my father can no longer walk up and down the steps, they will have a bedroom downstairs. It's really good in that their "new" room will at least be somewhere that has been a room before, which I think will help make the whole process less alienating.
this is the first change that we have made to our house. We are still waiting on government approval for a grant to develop our bathroom - that is, make it disability-friendly. And we will need to install a handrail at the front of the house so my father can walk up the front steps more easily. And then eventually, we will need ramps, and then fancy equipment to help him out of bed/into the shower etc.
This is yet another big step for us.
The first was him telling my sister and I about the disease. Then close family. Then friends. This was a 1 year process. Then he told work about his disease, which was probably the hardest, as he more than anything wants to work for as long as possible.
The second stage was him finally giving in, and applying for a disabled parking sticker.
The third stage has commenced - the alterations to our house. Whilst they may not be too big, they certainly make his disease, and the changes we have had to make, more visible.
Right now my father is at a point where he has no core strength in stomach. This makes very simple tasks such as standing upright very difficult. If we talk to him while he is standing, we find that we need to repeat ourselves. For a couple of weeks, before we decided to ask, we thought it was because the MND was affecting his brain, for example his memory. The family had a chat with him a couple of nights ago, and we found out that sometimes he has to concentrate so hard on controlling what muscles he has left in order to stand upright, that he doesn't hear what we say, and therefore asks us to repeat ourselves. This is therefore not a case of losing memory, but rather a case of distraction.
Today we have some tradesmen installing doors downstairs. I feel that this is the start of the disease being more visible.
We have a two storey house. We moved into our current house when I was 8 years old, and it was a single storey red brick house. Over the years, we renovated it, adding an additional level and essentially changing the entire house - cement rendering on the outside, new carpet, knocking down walls, wooden floorboards etc. When we first moved in, what is now our dining room was my parents room.
When we renovated, we knocked down the wall seperating the living room from my parents room to create a living room that flowed into the dining room.
We are now building doors to seperate those areas again, so when my father can no longer walk up and down the steps, they will have a bedroom downstairs. It's really good in that their "new" room will at least be somewhere that has been a room before, which I think will help make the whole process less alienating.
this is the first change that we have made to our house. We are still waiting on government approval for a grant to develop our bathroom - that is, make it disability-friendly. And we will need to install a handrail at the front of the house so my father can walk up the front steps more easily. And then eventually, we will need ramps, and then fancy equipment to help him out of bed/into the shower etc.
This is yet another big step for us.
The first was him telling my sister and I about the disease. Then close family. Then friends. This was a 1 year process. Then he told work about his disease, which was probably the hardest, as he more than anything wants to work for as long as possible.
The second stage was him finally giving in, and applying for a disabled parking sticker.
The third stage has commenced - the alterations to our house. Whilst they may not be too big, they certainly make his disease, and the changes we have had to make, more visible.
Thursday, January 17, 2008
A start of some sort
Hi,
My name is Rachel (21) and my father (52) has Motor Neurone Disease. Look it up if you want to know more about it. See http://www.mndnsw.asn.au/index.htm for starters.
He's been diagnosed for over a year now. At this point, he can walk 15 metres max in one go, and gets slowly worse every day. He is still working, although he probably shouldn't. He is still driving, although he definitely shouldn't be. There are however a lot of shouldn'ts, but when it comes to a man's sense of pride and vanity, these shoulds and shouldn'ts are superceded by a need for acceptance.
Nonetheless, these are all details that will be delved into later. Right now, my reason for creating this, is in hope that this might help other people who find themselves in a similar situation to me, in dealing with a loved one having Motor Neurone Disease, or in fact any other progressive degenerative neurological issue.
I am also hoping that this will be cathartic for me. A way of documenting what has been happening, for something to look back on, one day.
My name is Rachel (21) and my father (52) has Motor Neurone Disease. Look it up if you want to know more about it. See http://www.mndnsw.asn.au/index.htm for starters.
He's been diagnosed for over a year now. At this point, he can walk 15 metres max in one go, and gets slowly worse every day. He is still working, although he probably shouldn't. He is still driving, although he definitely shouldn't be. There are however a lot of shouldn'ts, but when it comes to a man's sense of pride and vanity, these shoulds and shouldn'ts are superceded by a need for acceptance.
Nonetheless, these are all details that will be delved into later. Right now, my reason for creating this, is in hope that this might help other people who find themselves in a similar situation to me, in dealing with a loved one having Motor Neurone Disease, or in fact any other progressive degenerative neurological issue.
I am also hoping that this will be cathartic for me. A way of documenting what has been happening, for something to look back on, one day.
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