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Old 03-09-17, 11:11 PM   #61
LECS
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Default Re: Moving from Message Board

Quote:
Originally Posted by jacqueline View Post
Yes it does answer some questions for now Bill.
Thank you
Having had much difficulty in reading and understanding these threads I am pleased that things are remaining as they are. I don't feel I am able to use any other site other than this one so I would have had to stop posting. I do want to pick up on a point that was made though, that those in the light of a cure not being found should be showing understanding and working out how support might be offered are not doing so. I think so much more needs to be done for those affected in any way by HD. It has not been enough to set up an organisation with designated individuals with their responsibility being to help those affected and yet they don't have the ability to reach those that they should. I think very long and hard before posting because I am mindful of those yet diagnosed. I for one am sick of apologising on behalf of my HD. I don't want to write the true extent of how I feel, how I'm affected or how terrified and alone I feel but the fact I have nowhere to turn in 2017 I think is a disgrace, a cure might be much trickier, but putting together an organisation that offers a listening ear and thinks outside the box and educates GPs, Benefits, Social Services etc to put together services that are not the norm but a little different because anyone affected in whatever way with HD is never on the make but desperately seeking a little light in a very dark place. I no longer see any professional because I can't see them without feeling anger frustration and hatred and I couldn't be part of an organisation knowing that there is a huge HD community out there tied up in a tangle of secrets and lies because there is no other choice if you care for your loved ones and sufferers and carers experiencing stuff that no one should ever have to and I achieved nothing that made a difference. The only conclusion I can draw from this is those who don't know what it is like don't believe it is. The reason why changing this message board causes fury is because enough silencing already happens, the HD community is not heard, I saw a new advert on the TV this week that I couldn't really get my head around but it was about a man finally getting a job and then not being able to turn up for his first day because of the pain of his arthritic condition not allowing him to get out of bed and losing the job. Raising awareness of arthritis I presume. Because of the secret world of HD I would hate to see an advert on the TV raising awareness and becoming a discussion point in families an actor showing symptoms. However some way forward needs to be found leaving sufferers to cope, carers to cope, people learning about it for the first time to cope a huge community with just a message board to vent and find advice and support is an absolute disgrace. I need someone to talk today about my situation but no one is there. Someone might be there if I was in crisis but they wouldn't be a specialist they would be a duty worker because it was a crisis. No one is helping me and I don't mean that in a sorry for myself way I mean exactly that. If I affect someone or if my HD affects someone they can choose to leave, if I can no longer participate in something I can leave, it's a very lonely existence that those who claim to have responsibility paid or otherwise fail to actually find a way where I am able to talk to someone. I went to seek solace in church a few weeks back, I found it a very calming place and I felt closer to my mum, I told my story and went regularly over a few weeks but was not made to feel welcomed neither has anyone despite knowing the full extent of my story bothered to find out why I stopped going. It's only in the next street and I walk past it most days I would never go in again. No one seems to fully appreciate how difficult it is to access anywhere and if I'm there boy have I gone through hell. When I voiced this to someone I was told how can they, they don't see your suffering your inner turmoil and I get that but if more people were made aware and educated then maybe I wouldn't feel like a leper everywhere I go. So again it's those that consider themselves to be in positions of caring that do little to help. The reason I am still here is because of this message board and the validation and kindness from those who have posted and those who read my posts and tell me how well I'm doing and if it stopped being here I would find it a huge loss. Being the optimist I am I looked at the new health site and I found it clumsy and when it showed me people living within a mile of me also suffering, I clicked on the individual faces and found that it wasn't with HD but another condition which I am sympathetic to but when you suffer with HD or it's fallout you need to be talking to like minded people who know and truely understand. This message board needs supporting, everyone out there affected needs to feel that they have found a safe place and the HDA and professionals need to have a good long think as to what they might do to make our dark world a little lighter which after all is what this message board does. Sending lots of hugs to you all. Lily
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Old 04-09-17, 11:44 PM   #62
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Default Re: Moving from Message Board

Dear Lily - what an open honest post❤️ I admire your honesty in writing how you feel. I have to say it has certainly made me think a little outside of the box. I for one have not been on here very much since Martin died almost 2 yrs ago. I wanted the board protected for all the valuable information stored on here, tips in how to deal with things, medication that has worked for some but not others, ways of dealing with the day to day **** (sorry) of HD. I am a dinosaur when it comes to technology, so I dont like change either, but for someone with HD depending on how far advanced the disease is, the prospect of learning a new site would be daunting if not impossible to say the least, and then as you say isolating that person even more. It is a point I am sure we have all missed, especially those in head office, when they have looked at alternatives. Going forward the HDA want to discuss the options of volunteers to help manage this site. I am not sure how feasible that is really, we can all come on here and offer our experiences, which of course as it states is not a substitute for professional advise, we all know the frustration as Lily describes with professionals not understanding HD, (I for one was always banging my head against the wall with the mental health team over Martins condition, that was never going to get fixed with pills, unlike most of the other patients) and I guess we would all like to think the HDA are the organisation closest to our hearts for being there for our loved ones, helping raise awareness and having the answers we are looking for.
I am wondering Bill why the HDA can't have a SHDA that is employed to look after the people that come on here, we all know they are given the task to over see occasionally in monitoring, although I wonder how often that actually is. Someone who can welcome the new people, someone with the knowledge and expertise to help the likes of Lily, feeing isolated and alone, that one contact could mean the world on that day. I know it will come down to funding but inthegrest scheme of things how many hours would it actually need on a weekly basis for a properly trained person to come and respond to people, rather than it be the day where someone comes on writes a post, for it to be left - no responses for days and that person feeling all the more hopeless.

Lily I hope you have had a better day today, I am so sorry to read that the church did not offer you the support you were hoping for, I am not a church goer myself, my faith disappeared when Martin was diagnosed with HD and even more so with the cancer, and I sometimes wonder how genuine some of these church people are? Maybe try another church, you may have just been unlucky. Take care xxxxxxxxxx

Finally Bill thank you for responding and confirming that the board will stay and no posts moved, in its current format I am happy with all my posts remaining and not being deleted.
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Old 06-09-17, 07:07 PM   #63
LECS
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Default Re: Moving from Message Board

Thanks Cupcake for your warm reply. I do find it tough and I would love to be able to talk to someone who understands what I feel in my head, when you have a scary mind you need reassurance, it wouldn't take many words, just a few on a regular basis to stop myself from feeling alone with my madness. Burdening loved ones impacts greatly so it becomes even more lonely. I have always been honest and I don't know how to be any other way and I meet nothing but disbelief that I could feel how I do which causes me great upset and frustration. This is a lovely community made up of geniuine people who find themselves in turmoil trying to make sense of their situation but it is not always appropriate to share details that may make someone feel more despair. It's a tough journey that demands the best support possible and the professionals who know how tough it is should put systems in place that do support. I have a very long list of names of people I would never ever see again but I had two visitors recently from the HD profession that I would be happy to see again so it can be done. Professionals have known of my existence for the past 13 years and no one has ever offered any support, I can't even find a support group to attend, I think this is a disgrace. Poor Gary is sick of HD to the point he doesn't want it mentioned and is very sick himself with a huge host of ailments which are not helped by my HD and I regularly lie and pretend to my sons and wider family because I have no other option if I want them to be well and yet I am fully aware of how poorly my mind is. I am still here because I understand how important my presence means to my youngest son, he shows me and tells me every day how much I mean to him so I keep going and trying for his sake but it would make all the difference if I could have a little help and to all of you wonderful supportive carers out there you all know how difficult it is to care for someone with HD and what a thankless task it is, so I've no idea what that help looks like but I feel strongly that someone should be thinking hard about it for all our sakes! Best wishes Lily
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Old 06-09-17, 09:39 PM   #64
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Default Re: Moving from Message Board

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Originally Posted by LECS View Post
Thanks Cupcake for your warm reply. I do find it tough and I would love to be able to talk to someone who understands what I feel in my head, when you have a scary mind you need reassurance, it wouldn't take many words, just a few on a regular basis to stop myself from feeling alone with my madness. Burdening loved ones impacts greatly so it becomes even more lonely. I have always been honest and I don't know how to be any other way and I meet nothing but disbelief that I could feel how I do which causes me great upset and frustration. This is a lovely community made up of geniuine people who find themselves in turmoil trying to make sense of their situation but it is not always appropriate to share details that may make someone feel more despair. It's a tough journey that demands the best support possible and the professionals who know how tough it is should put systems in place that do support. I have a very long list of names of people I would never ever see again but I had two visitors recently from the HD profession that I would be happy to see again so it can be done. Professionals have known of my existence for the past 13 years and no one has ever offered any support, I can't even find a support group to attend, I think this is a disgrace. Poor Gary is sick of HD to the point he doesn't want it mentioned and is very sick himself with a huge host of ailments which are not helped by my HD and I regularly lie and pretend to my sons and wider family because I have no other option if I want them to be well and yet I am fully aware of how poorly my mind is. I am still here because I understand how important my presence means to my youngest son, he shows me and tells me every day how much I mean to him so I keep going and trying for his sake but it would make all the difference if I could have a little help and to all of you wonderful supportive carers out there you all know how difficult it is to care for someone with HD and what a thankless task it is, so I've no idea what that help looks like but I feel strongly that someone should be thinking hard about it for all our sakes! Best wishes Lily
I think you are a very courageous lady, and deserve all the help and support you can get, as at the moment you are still able to see both sides, your inner strength is keeping you focused, and despite all the pain you feel in your heart you are still able to keep thinking of your family. My Martin struggled with that as HD took hold and locked him in another world where reality was not present very much, a mixture of psychosis, and unable to feel much emotion to anything, which made him a totally different person. As carers I think we tend to get abit lost sometimes, and exhausted and focus on all the bad bits, and don't think about what we write sometimes, forgetting that people suffering with the day to day challenges of HD read the posts. The information though hopefully helps others know that they are not alone with the struggle of trying to help. My sons are still untested, so we don't know what the future holds, but for me the message board is still important. I feel so sorry that there is no support in your area for you, and so few professionals that have been able to be supportive of you, the terrible post code lottery of the NHS, where some areas have a lot of help and support and others with nothing. Xxxx
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Old 07-09-17, 07:40 PM   #65
LECS
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Thanks Cupcake, I really appreciate your reply X
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Old 07-09-17, 10:03 PM   #66
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Default Re: Moving from Message Board

As cupcake said Lecs... us carers of partners sons siblings parents etc need to take a step back sometimes and see it from your point of view and even more so the professionals who are supposed to help you and other people suffering you are amazing and I thank you for your insight. Sorry you feeling have no support wish there was more could be done x

GABBY
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Old 26-09-17, 03:26 PM   #67
jacqueline
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Default Re: Moving from Message Board

Quote:
Originally Posted by LECS View Post
Having had much difficulty in reading and understanding these threads I am pleased that things are remaining as they are. I don't feel I am able to use any other site other than this one so I would have had to stop posting. I do want to pick up on a point that was made though, that those in the light of a cure not being found should be showing understanding and working out how support might be offered are not doing so. I think so much more needs to be done for those affected in any way by HD. It has not been enough to set up an organisation with designated individuals with their responsibility being to help those affected and yet they don't have the ability to reach those that they should. I think very long and hard before posting because I am mindful of those yet diagnosed. I for one am sick of apologising on behalf of my HD. I don't want to write the true extent of how I feel, how I'm affected or how terrified and alone I feel but the fact I have nowhere to turn in 2017 I think is a disgrace, a cure might be much trickier, but putting together an organisation that offers a listening ear and thinks outside the box and educates GPs, Benefits, Social Services etc to put together services that are not the norm but a little different because anyone affected in whatever way with HD is never on the make but desperately seeking a little light in a very dark place. I no longer see any professional because I can't see them without feeling anger frustration and hatred and I couldn't be part of an organisation knowing that there is a huge HD community out there tied up in a tangle of secrets and lies because there is no other choice if you care for your loved ones and sufferers and carers experiencing stuff that no one should ever have to and I achieved nothing that made a difference. The only conclusion I can draw from this is those who don't know what it is like don't believe it is. The reason why changing this message board causes fury is because enough silencing already happens, the HD community is not heard, I saw a new advert on the TV this week that I couldn't really get my head around but it was about a man finally getting a job and then not being able to turn up for his first day because of the pain of his arthritic condition not allowing him to get out of bed and losing the job. Raising awareness of arthritis I presume. Because of the secret world of HD I would hate to see an advert on the TV raising awareness and becoming a discussion point in families an actor showing symptoms. However some way forward needs to be found leaving sufferers to cope, carers to cope, people learning about it for the first time to cope a huge community with just a message board to vent and find advice and support is an absolute disgrace. I need someone to talk today about my situation but no one is there. Someone might be there if I was in crisis but they wouldn't be a specialist they would be a duty worker because it was a crisis. No one is helping me and I don't mean that in a sorry for myself way I mean exactly that. If I affect someone or if my HD affects someone they can choose to leave, if I can no longer participate in something I can leave, it's a very lonely existence that those who claim to have responsibility paid or otherwise fail to actually find a way where I am able to talk to someone. I went to seek solace in church a few weeks back, I found it a very calming place and I felt closer to my mum, I told my story and went regularly over a few weeks but was not made to feel welcomed neither has anyone despite knowing the full extent of my story bothered to find out why I stopped going. It's only in the next street and I walk past it most days I would never go in again. No one seems to fully appreciate how difficult it is to access anywhere and if I'm there boy have I gone through hell. When I voiced this to someone I was told how can they, they don't see your suffering your inner turmoil and I get that but if more people were made aware and educated then maybe I wouldn't feel like a leper everywhere I go. So again it's those that consider themselves to be in positions of caring that do little to help. The reason I am still here is because of this message board and the validation and kindness from those who have posted and those who read my posts and tell me how well I'm doing and if it stopped being here I would find it a huge loss. Being the optimist I am I looked at the new health site and I found it clumsy and when it showed me people living within a mile of me also suffering, I clicked on the individual faces and found that it wasn't with HD but another condition which I am sympathetic to but when you suffer with HD or it's fallout you need to be talking to like minded people who know and truely understand. This message board needs supporting, everyone out there affected needs to feel that they have found a safe place and the HDA and professionals need to have a good long think as to what they might do to make our dark world a little lighter which after all is what this message board does. Sending lots of hugs to you all. Lily
Hi Lily,
What a heart rendering message.
I am not a believer in anyway in god or in churches but my help used to come form Spiritual Chrches.
To me spirituality is everything in everything.
Even thought Spiritualists Churches pray to God I don't pray to God as I am not a believer in a god.
BUT I am a believer in people and their sprits after they pass on. Everything that a person has done in life cant end when the body is finished. The loved ones that have been in your life are all around you and stay with you. I am also a believer in Guardian Angels. My Guardian Angel has had to work extra hard to keep me safe as I am a nightmare. They deserve their wings looking after me when I throw caution to the wind. I must have given my Guardian Angels heart attack sometimes hahaha.
Lily is there not a Spiritualist Church near you at all. They can also give you Healing after the service which in itself is very soothing.
Thank you Lily for your knowing insite into HD. Please let me know if you if manage to go to a Spiritualist Church. It is also inter denominational. I think if that is the right word. In other words all religions are welcome.
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