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...
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