What gets me sometimes is I never applied for this job. I don't ever remember saying ooh yes I'd love to do that. There was no choice. No one is coming along to say thank you either. There will be no annual appraisal with talk of pay rises and promotions.
If you ever see a carer..it may cross your mind that they cope well...perhaps better than you would...luckily they are such a strong person. I have to tell you they are not. It's all fake. Inside they hate it as much as you know you would. No one talks about it you see..how much they hate it.
Cos it's wrong to moan right?
I wish I could be a better carer. I wish I could give up my happiness for his. More self sacrificing, patient, loving, calm..but I'm not sure I'm up to the job. I wish I could keep my marriage vows. But really who would stand in church and say "I agree to stand by you despite you getting a disease that means I no longer recognise you. I will take on all the responsibility because you no longer can. I will watch you whilst you ignore our children because your too tired. I will accept it when you let me down again and again.....and that this will go in and on...with the promise that things will only get worse". Would kind of spoil the mood of the ceremony right?
Inside you see..I'm still a little girl. I want to be back in my parents house, in my bedroom..surrounded by my Wham and Duran Duran posters. Not a care in the world except whether I would get to snog George O'Leary (never did btw).
And at night? At night I dream of handsome princes to whisk me away and take me to a better place...
Wednesday, 26 December 2012
Monday, 10 December 2012
Money.
So, living with HD can kind of mess up your finances. I wasn't really used to having money in the first place. I grew up in a working class family. A rough part of London. Never went without..but certainly not rich. My parents were intelligent people though. Made sure I knew right from wrong and worked their butts off to give me an education. My Dad always told me to get me an education, go to Uni. It would open doors..give me choices in life (it was also mean I would get to stay up all night, sleep all day, try dubious substances and lose my virginity...he didn't mention that but thanks anyway Dad). So, somewhere along the way I ended up becoming an inverted snob, despising wealthy people, joining the Socialist Workers party ...left of left. My Dad was proud.... my mother hung her head in shame.
Then I met Mr W. He came from money you see. Had a good job..own business. Many women would have run to that but I hated it. His friends mocked my left wing values.. I despised their ability to behave like hideous rich bastards who clearly didn't give a stuff about anything about having a good time. But somewhere along the line I guess I joined in. I was also earning a good salary. The holidays were good. The shopping. The BMW on the drive (well you would wouldn't you?). My father started mutterings of me being a Gucci Socialist.
So, then it all changed. Mr W's business went down the pan. Then he got sick. So now we live on benefits and a 'blink and you'd miss it' pension. So now I watch every penny. have to constantly make choices about where its spent. Worry I won't be able to send my kids to Uni. Stress when I have to say no to something they want. For the first time in my life I take handouts from my family..having always been proud to stand on my own two feet (but Mum if your reading this..im not that proud..and there are a pair of boots in Next calling to me...) Then there is the stress of claiming the money...stupid forms...having to learn which words to use, which boxes to tick.
I don't miss the money though. Only the freedom and choices it brings. So, where do we go from here? I guess its all down hill... but somehow I know I will be ok.
Anyway, according to the Daily Mail we are living the life of riley right? and I guess if it gets really bad I can always knock out a few more kids.
Then I met Mr W. He came from money you see. Had a good job..own business. Many women would have run to that but I hated it. His friends mocked my left wing values.. I despised their ability to behave like hideous rich bastards who clearly didn't give a stuff about anything about having a good time. But somewhere along the line I guess I joined in. I was also earning a good salary. The holidays were good. The shopping. The BMW on the drive (well you would wouldn't you?). My father started mutterings of me being a Gucci Socialist.
So, then it all changed. Mr W's business went down the pan. Then he got sick. So now we live on benefits and a 'blink and you'd miss it' pension. So now I watch every penny. have to constantly make choices about where its spent. Worry I won't be able to send my kids to Uni. Stress when I have to say no to something they want. For the first time in my life I take handouts from my family..having always been proud to stand on my own two feet (but Mum if your reading this..im not that proud..and there are a pair of boots in Next calling to me...) Then there is the stress of claiming the money...stupid forms...having to learn which words to use, which boxes to tick.
I don't miss the money though. Only the freedom and choices it brings. So, where do we go from here? I guess its all down hill... but somehow I know I will be ok.
Anyway, according to the Daily Mail we are living the life of riley right? and I guess if it gets really bad I can always knock out a few more kids.
Sunday, 9 December 2012
This one's for you...
So, I chickened out of blogging. Its quite hard you see, to open up your soul to anyone who chooses to read it. There's no point writing if it's not from the heart. I guess its ok if the blog is about cooking, shopping etc but this a blog about living with someone who has a progressive neurological illness, it ain't gonna be pretty.
I was fine with strangers reading it. Fine with close friends reading it..they already know my life anyway but I found it hard with the in-betweeners. You know the friends you havn't seen for years, the school run people, the sympathetic looks. Couldn't be doing with sympathy..not my thing..although I know well meant.
But a few of my friends kept nagging me. ''We miss Mrs W" they said..keep blogging. So, I thought I would try again...
So I want to dedicate this one to them. For every bit of crap in my life I seem to have something good. So many lovely people in my life...and they just keep coming. I think I do have someone up there looking out for me after all.
The special one's you know...the one's that accept Mr W, turn a blind eye as he knocks his food on the floor, show concern when he nearly falls over and even blame someone else when he falls off his chair! The one's that really look into my eyes when they ask me if im ok and don't just take my word for it.
Thank you my BFF's this one is for you!
(Gonna miss you Mrs Bangater!. *sobbs*)
I was fine with strangers reading it. Fine with close friends reading it..they already know my life anyway but I found it hard with the in-betweeners. You know the friends you havn't seen for years, the school run people, the sympathetic looks. Couldn't be doing with sympathy..not my thing..although I know well meant.
But a few of my friends kept nagging me. ''We miss Mrs W" they said..keep blogging. So, I thought I would try again...
So I want to dedicate this one to them. For every bit of crap in my life I seem to have something good. So many lovely people in my life...and they just keep coming. I think I do have someone up there looking out for me after all.
The special one's you know...the one's that accept Mr W, turn a blind eye as he knocks his food on the floor, show concern when he nearly falls over and even blame someone else when he falls off his chair! The one's that really look into my eyes when they ask me if im ok and don't just take my word for it.
Thank you my BFF's this one is for you!
(Gonna miss you Mrs Bangater!. *sobbs*)
Wednesday, 11 April 2012
The end of the trial...
So Mr W wasn't keen on feeling so sedated. We tried varying other medications but it became clear that it was the trial drug that was having this side effect. When Mr W couldn't find the energy to get up and get some lunch we both decided something had to give..so he stopped taking the trial drug.
Gradually he began to come back to life. By the end of the week he actually left the house. Two weeks after stopping taking the med's he was pretty much back to normal. Or, HD normal.
Last week we went up to London for him to get checked over...to make sure there were no ill effects from the medication. Whenever we go up to London my tummy goes haywire. I have always been a jittery tummy kind of person and I guess going to London forces me acknowledge that Mr W is not well (the rest of the time I like to pretend he just walks a bit funny). Anyway, we dropped the children off at my parents..as soon as we get to the end of their road I get that urgent kind of need the toilet feeling. So I drive quickly to the station. I inform Mr W how I am feeling (he is used to me oversharing!) and that as soon as we get to the station I need the toilet. We buy our tickets and I plan my emergency route to the toilet. Mr W decides that now is a great time to check out the times of the trains. In exasperation I fling his ticket at him and make a run for it. He then proceeds to shout to me, as I am running away, that 'If I do my poo in the next five minutes we can catch the 8.52' . I run red faced down the platform....
Later, feeling much more comfortable, we arrive at UCL. Now, I hate hospitals and fortunately the trial is being undertaken at the research facility behind the hospital. I do however have to walk through the reception area of the hospital. I try not to breath (germs!) or look (ill people) as I rush through. As soon as we get to the Research Centre I relax. The team there are so lovely. Really relaxed (but professional) and most importantly they treat Mr W like a normal person who just happens to have HD. A plus in my book and sadly this can be rare. Now, like others, I have done my bit of NHS bashing. There are aspects I hate about it. The jobsworth, the poor management, the grunting receptionist and the doctors who are so far up their own arses that they have lost all ability to communicate with patients. But the team at Queens Square are amazing and I seriously do not know where we would be without them. They have totally made the Clinical Trial an enjoyable experience for both of us.
So the good news is that Mr W has no detrimental effects from taking the drug. We have not delayed the trial at all, as I was worried we had. This side effect is useful information for the trial. No one else as yet has reported this side effect..which is good news for the HD Community. Just because Mr W had this side effect it does not mean that the drug will have that effect in others. Part of this trial is assessing the optimum dosage. Perhaps Mr W was on a high dose. It is also felt, that as he seemed to be unique in this side effect, that perhaps it was interacting with other meds he is taking. So, all in all the hope for this drug is still there. Other good news is that they have recruited to this trial really quickly. This is good news if the drug works as the sooner its completed the sooner it becomes available.
So, life as we knew it, resumes in our household. The other exciting news is that Mr W, being a blue badge holder is exempt from the hose pipe ban. So, for a nominal fee I can rent him out to water your garden!
Gradually he began to come back to life. By the end of the week he actually left the house. Two weeks after stopping taking the med's he was pretty much back to normal. Or, HD normal.
Last week we went up to London for him to get checked over...to make sure there were no ill effects from the medication. Whenever we go up to London my tummy goes haywire. I have always been a jittery tummy kind of person and I guess going to London forces me acknowledge that Mr W is not well (the rest of the time I like to pretend he just walks a bit funny). Anyway, we dropped the children off at my parents..as soon as we get to the end of their road I get that urgent kind of need the toilet feeling. So I drive quickly to the station. I inform Mr W how I am feeling (he is used to me oversharing!) and that as soon as we get to the station I need the toilet. We buy our tickets and I plan my emergency route to the toilet. Mr W decides that now is a great time to check out the times of the trains. In exasperation I fling his ticket at him and make a run for it. He then proceeds to shout to me, as I am running away, that 'If I do my poo in the next five minutes we can catch the 8.52' . I run red faced down the platform....
Later, feeling much more comfortable, we arrive at UCL. Now, I hate hospitals and fortunately the trial is being undertaken at the research facility behind the hospital. I do however have to walk through the reception area of the hospital. I try not to breath (germs!) or look (ill people) as I rush through. As soon as we get to the Research Centre I relax. The team there are so lovely. Really relaxed (but professional) and most importantly they treat Mr W like a normal person who just happens to have HD. A plus in my book and sadly this can be rare. Now, like others, I have done my bit of NHS bashing. There are aspects I hate about it. The jobsworth, the poor management, the grunting receptionist and the doctors who are so far up their own arses that they have lost all ability to communicate with patients. But the team at Queens Square are amazing and I seriously do not know where we would be without them. They have totally made the Clinical Trial an enjoyable experience for both of us.
So the good news is that Mr W has no detrimental effects from taking the drug. We have not delayed the trial at all, as I was worried we had. This side effect is useful information for the trial. No one else as yet has reported this side effect..which is good news for the HD Community. Just because Mr W had this side effect it does not mean that the drug will have that effect in others. Part of this trial is assessing the optimum dosage. Perhaps Mr W was on a high dose. It is also felt, that as he seemed to be unique in this side effect, that perhaps it was interacting with other meds he is taking. So, all in all the hope for this drug is still there. Other good news is that they have recruited to this trial really quickly. This is good news if the drug works as the sooner its completed the sooner it becomes available.
So, life as we knew it, resumes in our household. The other exciting news is that Mr W, being a blue badge holder is exempt from the hose pipe ban. So, for a nominal fee I can rent him out to water your garden!
Thursday, 15 March 2012
Happy Daze...by Mrs W: Is this love?
Happy Daze...by Mrs W: Is this love?: A while back, when at the carer's meeting there was a lady who was from the NHS. I think she was some sort of Neuro-Co-ordinator. Really g...
Is this love?
A while back, when at the carer's meeting there was a lady who was from the NHS. I think she was some sort of Neuro-Co-ordinator. Really great fiesty lady. The kind you would want looking out for you. Anyway she said that when she heard the stories around the room she was amazed at the amount of love the carers had for whoever they were caring for and that she didn't know if she could do it. My knee jerk reaction was - 'love?? no we are just stuck with it' (see I never said I was a nice person).
Since then I have reflected on what she said. Why do we stick around? yes, im married...in sickness and in health and all that. In reality however I could just up and go. What's to stop me? I could have a care free life again for a while. I'm certainly not here for the lifestyle...not my thing. Nor for the money...ha ha to that one. So why am I here? Well, whilst I know I could not walk away from this. Even if I lived elsewhere I would constantly be wondering how he was. Had he taken his meds. Has he been attending appointments. I would want to attend his appointments with the specialist. Let someone else go instead? no, I dont think so....too much of a control freak,me. I wouldn't trust anyone else. I would worry about my kids. Is he still being a good Dad? I want to make sure he listens to them and knows every detail of their lives.
The thing is Mr W is still my best friend (yes HD you havn't taken that yet) he is still the person who never left my side once whilst I gave birth (ok once to go to the toilet and even that I told him off for). He is still the person who has loved me unconditionally for the last 20 years or so. So now he is different but he is the only person I know who could be so brave in dealing with this disease. Never doing self-pity (and comforting me when I wallow in mine). He is still giving 100% of himself to this family (even when 100% is not much).
So, what is it then that makes us stick around? I guess it is love.
p.s thank you to everyone who is continuing to read my wafflings and thank you for showing you care xx
Since then I have reflected on what she said. Why do we stick around? yes, im married...in sickness and in health and all that. In reality however I could just up and go. What's to stop me? I could have a care free life again for a while. I'm certainly not here for the lifestyle...not my thing. Nor for the money...ha ha to that one. So why am I here? Well, whilst I know I could not walk away from this. Even if I lived elsewhere I would constantly be wondering how he was. Had he taken his meds. Has he been attending appointments. I would want to attend his appointments with the specialist. Let someone else go instead? no, I dont think so....too much of a control freak,me. I wouldn't trust anyone else. I would worry about my kids. Is he still being a good Dad? I want to make sure he listens to them and knows every detail of their lives.
The thing is Mr W is still my best friend (yes HD you havn't taken that yet) he is still the person who never left my side once whilst I gave birth (ok once to go to the toilet and even that I told him off for). He is still the person who has loved me unconditionally for the last 20 years or so. So now he is different but he is the only person I know who could be so brave in dealing with this disease. Never doing self-pity (and comforting me when I wallow in mine). He is still giving 100% of himself to this family (even when 100% is not much).
So, what is it then that makes us stick around? I guess it is love.
p.s thank you to everyone who is continuing to read my wafflings and thank you for showing you care xx
Monday, 5 March 2012
Happy Daze...by Mrs W: Bloody drugs...
Happy Daze...by Mrs W: Bloody drugs...: So the last couple of weeks have been pretty rubbish. Little Miss W had Chicken Pox or Chicken Spox as she liked to call it. She didn't g...
Bloody drugs...
So the last couple of weeks have been pretty rubbish. Little Miss W had
Chicken Pox or Chicken Spox as she liked to call it. She didn't get it too bad but when she is poorly she becomes very clingy. I quite enjoyed the first two days cuddled up on the sofa but not much got done.
In addition to this Mr W lost his oomph. His motivation to do pretty much anything has gone right out the window. I hope to god it is medication related and not disease progression (surely it wouldn't kick in so quick?)
I mentioned before that he is currently doing a drug trial. The symptoms seem to co-incide with him taking the new drug. This means if it becomes intolerable he may have to stop the trial. Bad for the trial organisers and a lot of hope out of the window for us. We are going to try adjusting some stuff before we make any decisions on that one.
It's just all so complex and horrid...HD really is a piss taker!
I suppose the only good thing to come out of all this is that I sure will appreciate the old Mr W when he comes back. Come back Mr W all is forgiven!
Chicken Pox or Chicken Spox as she liked to call it. She didn't get it too bad but when she is poorly she becomes very clingy. I quite enjoyed the first two days cuddled up on the sofa but not much got done.
In addition to this Mr W lost his oomph. His motivation to do pretty much anything has gone right out the window. I hope to god it is medication related and not disease progression (surely it wouldn't kick in so quick?)
I mentioned before that he is currently doing a drug trial. The symptoms seem to co-incide with him taking the new drug. This means if it becomes intolerable he may have to stop the trial. Bad for the trial organisers and a lot of hope out of the window for us. We are going to try adjusting some stuff before we make any decisions on that one.
It's just all so complex and horrid...HD really is a piss taker!
I suppose the only good thing to come out of all this is that I sure will appreciate the old Mr W when he comes back. Come back Mr W all is forgiven!
Thursday, 23 February 2012
Happy Daze...by Mrs W: The Carer's Meeting
Happy Daze...by Mrs W: The Carer's Meeting: Despite knowing several people in the HD Community I have, as yet, not really met that many people that live within 'popping over for a coff...
The Carer's Meeting
Despite knowing several people in the HD Community I have, as yet, not really met that many people that live within 'popping over for a coffee' distance and this is something that I would like. Our 'local' branch meet a couple of times a year but those meetings are held over an hour away and not always practical to attend. We did attend a branch meeting a couple of years ago. This was soon after Mr W was diagnosed. I was still at the 'emotional wreck' stage of dealing with everything. I was nervous to say the least. I was holding up OK, and then a lady with quite severe symptoms arrived with her husband. I couldn't deal with it and had to leave the room for a while. Prior to this, I had only really seen HD on the Internet and had not witnessed someone so poorly. I felt so ashamed to have to leave the room and hoped that I did not upset the couple. Since then I have met other people with severe symptoms and not been so affected but I haven't been brave enough for a branch meeting again!
So going to a Carers meeting (set up by the lovely Helen Santini from the HDA) seemed a great idea. People to chat with, who's partners, would all be at a similar stage to Mr W...we could share stories and ideas. I would come home uplifted and revitalised. Ha! why did I kid myself? Despite us all being affected by HD in one way or another of course everyone is at different stages. Around the room, these lovely people, told me heartbreaking stories. The mother who is caring for both her son and husband whilst dealing with breast cancer herself. The lady whose son came home from University to be looked after. The woman whose days are dictated by her husbands moods.
Im not saying it was not a helpful meeting but I came away with a heavy heart. I felt grateful that Mr W does not, as yet, have some of these problems but there is no pleasure to be found in hearing about others lives being worse than yours. I am a doer. I want to solve all their problems. I want to make it all go away. I want to erase some of what I heard as I will now worry that Mr W will have some of those problems.
There is no easy answer to how to get the right support. Perhaps when I reach the 'acceptance' stage (think I'm still waiting...) I will cope better ... who knows. In the meantime I think I will try the 'branch' route again. Maybe attending social events that raise money will help my desire to 'do' something and help me feel that I am helping.
So going to a Carers meeting (set up by the lovely Helen Santini from the HDA) seemed a great idea. People to chat with, who's partners, would all be at a similar stage to Mr W...we could share stories and ideas. I would come home uplifted and revitalised. Ha! why did I kid myself? Despite us all being affected by HD in one way or another of course everyone is at different stages. Around the room, these lovely people, told me heartbreaking stories. The mother who is caring for both her son and husband whilst dealing with breast cancer herself. The lady whose son came home from University to be looked after. The woman whose days are dictated by her husbands moods.
Im not saying it was not a helpful meeting but I came away with a heavy heart. I felt grateful that Mr W does not, as yet, have some of these problems but there is no pleasure to be found in hearing about others lives being worse than yours. I am a doer. I want to solve all their problems. I want to make it all go away. I want to erase some of what I heard as I will now worry that Mr W will have some of those problems.
There is no easy answer to how to get the right support. Perhaps when I reach the 'acceptance' stage (think I'm still waiting...) I will cope better ... who knows. In the meantime I think I will try the 'branch' route again. Maybe attending social events that raise money will help my desire to 'do' something and help me feel that I am helping.
Friday, 10 February 2012
Happy Daze...by Mrs W: Should I be angry?
Happy Daze...by Mrs W: Should I be angry?: Little Miss W has gone out with her Dad to visit her Grandparents, so I thought I would grab an opportunity to avoid doing any housework! ...
Should I be angry?
Little Miss W has gone out with her Dad to visit her Grandparents, so I thought I would grab an opportunity to avoid doing any housework!
I want to start by saying a massive thank you to everyone that has read this blog. So many have taken the time to comment, 'like' my status or to e-mail me. To be honest I am overwhelmed and really touched. I worry when writing this that I will choose the wrong words and may cause offence...I am no expert on HD and only know it from my limited experience. I know there are many of you who have been on this journey a lot longer than I have. So please forgive me if I get it wrong. Mr W and I also like to deal with things with sense of humour...again hope this does not offend. It is just how we deal with stuff.
I have reflected on one of my contacts who seem to suggest that we should feel angry about stuff. I am not sure why but I really don't feel angry. I also don't get the feeling that those that I have connected with, in the HD Community, feel anger. I wonder why this is. Yes, occasionally someone has made a stupid comment. But do you know what - people can be stupid!! I do get frustrated by some people's lack of understanding - but why should they understand - was I any different to them before this happened to us? In the main, people have been overwhelmingly kind and supportive... taking time to see the real Mr W behind the illness. Families have been supportive...strengthening relationships that were previously on occasion fragile. Some old friends have disappeared - actually only one - I don't even feel angry about that any more. We have lost one friend but made so many new - dare I say - better friendships - it no longer matters. Existing friendships have strengthened - people have shown me how much they care - even walking up mountains with me! (way beyond the call of duty).
Some health professionals have been idiots - but we ditched them and found better ones. In fact an amazing team who are always there for us - and help us laugh along the way.
Of course I feel sad. Sad about what could of been. Sad about the effect on my children (but am hoping and praying every day that they will cure this thing). If they do ...my children will be all the better off for learning at an early age what is important in life.
So why do we not feel more angry? Well within the HD community, time is not on our side. It becomes precious, you don't sweat the small stuff, you learn to appreciate what is important. I think I just don't have time to feel angry. What do you think?
I want to start by saying a massive thank you to everyone that has read this blog. So many have taken the time to comment, 'like' my status or to e-mail me. To be honest I am overwhelmed and really touched. I worry when writing this that I will choose the wrong words and may cause offence...I am no expert on HD and only know it from my limited experience. I know there are many of you who have been on this journey a lot longer than I have. So please forgive me if I get it wrong. Mr W and I also like to deal with things with sense of humour...again hope this does not offend. It is just how we deal with stuff.
I have reflected on one of my contacts who seem to suggest that we should feel angry about stuff. I am not sure why but I really don't feel angry. I also don't get the feeling that those that I have connected with, in the HD Community, feel anger. I wonder why this is. Yes, occasionally someone has made a stupid comment. But do you know what - people can be stupid!! I do get frustrated by some people's lack of understanding - but why should they understand - was I any different to them before this happened to us? In the main, people have been overwhelmingly kind and supportive... taking time to see the real Mr W behind the illness. Families have been supportive...strengthening relationships that were previously on occasion fragile. Some old friends have disappeared - actually only one - I don't even feel angry about that any more. We have lost one friend but made so many new - dare I say - better friendships - it no longer matters. Existing friendships have strengthened - people have shown me how much they care - even walking up mountains with me! (way beyond the call of duty).
Some health professionals have been idiots - but we ditched them and found better ones. In fact an amazing team who are always there for us - and help us laugh along the way.
Of course I feel sad. Sad about what could of been. Sad about the effect on my children (but am hoping and praying every day that they will cure this thing). If they do ...my children will be all the better off for learning at an early age what is important in life.
So why do we not feel more angry? Well within the HD community, time is not on our side. It becomes precious, you don't sweat the small stuff, you learn to appreciate what is important. I think I just don't have time to feel angry. What do you think?
Wednesday, 8 February 2012
So, what does HD mean for us?
HD can vary in different people. Whilst most people will experience similar symptoms it seems to me that the particular areas that cause problems can be quite varied. The joy of HD is that it is progressive, meaning that symptoms tend to remain stable for a while and then 'wham' a new symptom or issue tends to arrive. Keeps us on our toes.
So, this is where we are pretty much at for now:
Motor Impairment
This effects movement. Walking is affected. Balance is poor. Gait is poor. Co-ordination is affected making Mr W very clumsy. Mr W has been asked if he has been drinking, this is the effect HD has on the body.
Spacial Awareness
Mr W is prone to walking into things, including children on occasion.
Speech, swallowing , eating etc.
What I didn't know until recently is that eating and speaking is actually a very complicated process involving several different functions. Strange to think that we don't really give it any thought. It is no surprise then that this is affected so early on in the disease. Speech can appear slurred and with lack of clarity. Choking becomes a common occurrence.
Lack of oomph!
This was I would say one of the first things I started to notice in Mr W prior to diagnosis. Ability to initiate tasks becomes affected ... particularly those that Mr W is not keen on (or perhaps he is just smarter than me)...I have gradually over a five year period become responsible for most household chores. ( Except putting the bin out! and I'm not taking that one on easily)
This also affects social interaction as ability to initiate conversation can be affected.
Sadly this was the main reason Mr W had to give up work and can be quite hard for both of us to deal with. People can understand being physically unable to do this...mentally unable is harder to understand.
Sleeping
The changes in the brain interfere with normal sleep patterns. This brings with it a continual challenge of finding drugs or supplements to help with sleep.
Lack of energy
HD interferes with energy production. This, added to everyday tasks becoming harder for the brain to undertake, means that Mr W spends a lot of time falling asleep on the sofa! Imagine you had only one arm. Perhaps you would use the other one a great deal more. This arm would therefore become very tired easier. With HD the other brain cells have to compensate for the ones that have been affected or impaired. The rest of the brain has to work harder and can therefore tire more easily.
Cognition
With HD cognitive skills decline. For us it is very much a slowing down of thinking. Before diagnosis I was often guilty of shouting " have you heard me? are you going to answer?" In fact, on a bad day I do still do this. (Understanding what is going on and being tolerant are not always the same thing....and I am no angel!) Mr W likes to say "pardon" a lot. This is not a sign of poor hearing but of him taking time to process what I have said.
Chorea
This is one of the worst aspects of the disease as far as I am concerned. Chorea 'dance' makes it sound like something fun....but involuntary movements are far from fun. We have gone from mild finger tapping to full body jerks and it is a constant reminder of the illness. At its worst people with HD become unable to remain seated on a chair without falling off. There is nothing pleasant about Chorea. There are however some medications which can be of help.
Poor temperature regulation
You would think not a big issue but having a husband who likes to walk round in his boxers and constantly opens windows "because he is too hot" drives me mad! He clearly has not been affected by the recent cold weather!
So, this is where we are pretty much at for now:
Motor Impairment
This effects movement. Walking is affected. Balance is poor. Gait is poor. Co-ordination is affected making Mr W very clumsy. Mr W has been asked if he has been drinking, this is the effect HD has on the body.
Spacial Awareness
Mr W is prone to walking into things, including children on occasion.
Speech, swallowing , eating etc.
What I didn't know until recently is that eating and speaking is actually a very complicated process involving several different functions. Strange to think that we don't really give it any thought. It is no surprise then that this is affected so early on in the disease. Speech can appear slurred and with lack of clarity. Choking becomes a common occurrence.
Lack of oomph!
This was I would say one of the first things I started to notice in Mr W prior to diagnosis. Ability to initiate tasks becomes affected ... particularly those that Mr W is not keen on (or perhaps he is just smarter than me)...I have gradually over a five year period become responsible for most household chores. ( Except putting the bin out! and I'm not taking that one on easily)
This also affects social interaction as ability to initiate conversation can be affected.
Sadly this was the main reason Mr W had to give up work and can be quite hard for both of us to deal with. People can understand being physically unable to do this...mentally unable is harder to understand.
Sleeping
The changes in the brain interfere with normal sleep patterns. This brings with it a continual challenge of finding drugs or supplements to help with sleep.
Lack of energy
HD interferes with energy production. This, added to everyday tasks becoming harder for the brain to undertake, means that Mr W spends a lot of time falling asleep on the sofa! Imagine you had only one arm. Perhaps you would use the other one a great deal more. This arm would therefore become very tired easier. With HD the other brain cells have to compensate for the ones that have been affected or impaired. The rest of the brain has to work harder and can therefore tire more easily.
Cognition
With HD cognitive skills decline. For us it is very much a slowing down of thinking. Before diagnosis I was often guilty of shouting " have you heard me? are you going to answer?" In fact, on a bad day I do still do this. (Understanding what is going on and being tolerant are not always the same thing....and I am no angel!) Mr W likes to say "pardon" a lot. This is not a sign of poor hearing but of him taking time to process what I have said.
Chorea
This is one of the worst aspects of the disease as far as I am concerned. Chorea 'dance' makes it sound like something fun....but involuntary movements are far from fun. We have gone from mild finger tapping to full body jerks and it is a constant reminder of the illness. At its worst people with HD become unable to remain seated on a chair without falling off. There is nothing pleasant about Chorea. There are however some medications which can be of help.
Poor temperature regulation
You would think not a big issue but having a husband who likes to walk round in his boxers and constantly opens windows "because he is too hot" drives me mad! He clearly has not been affected by the recent cold weather!
Happy Daze...by Mrs W: Phase II Trial starts...
Happy Daze...by Mrs W: Phase II Trial starts...: "A Double-Blind, Placebo-Controlled Study in Huntington's Disease Patients to Determine the Safety and Tolerability of SEN0014196". Why d...
Saturday, 28 January 2012
Why Blog??
So, why do a blog? I can honestly say I have no idea other than it seems like a good idea and I can't afford therapy. In December 2004 my husband was diagnosed with a progressive Neurological condition called Huntington's Disease. Prior to the day we met with the Neurologist, and they took blood for the relevant blood test, I had never heard of this disease. The diagnosis can only be likened to waking up from a lovely dream and your life becoming a living nightmare. My daughter was 3 months old when we received Mr W's diagnosis. Our children are now 3 and 7.
So, I guess I have stuff I want to talk about.
Whilst life has been a bit of a roller coaster since diagnosis it has not all been bad. In fact there has been a lot of good. One of the main reasons that I wanted to blog was that Mr W is going to start a Phase II clinical trial this month. I though it might be useful to share our experiences so that others can decide if this is something they may like to get involved in. I also want to share, that life, living with HD (or I guess in its shadows) ain't all bad... for someone just diagnosed that can be difficult to believe I know. It has taken me three years and a lOT of those lovely happy pills to get to this point!
So, I guess I have stuff I want to talk about.
Whilst life has been a bit of a roller coaster since diagnosis it has not all been bad. In fact there has been a lot of good. One of the main reasons that I wanted to blog was that Mr W is going to start a Phase II clinical trial this month. I though it might be useful to share our experiences so that others can decide if this is something they may like to get involved in. I also want to share, that life, living with HD (or I guess in its shadows) ain't all bad... for someone just diagnosed that can be difficult to believe I know. It has taken me three years and a lOT of those lovely happy pills to get to this point!
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