Thats a shame Vicky - although I have had not email contact with you - there seem to be wellwishers on thsi site that have found your posts insightful and will miss you and I suppose the support they can give to you and you to them Spam well - it gets on my nerves too esp as I have started reading it with expectations - to it dawned on me 'Oh right they are trying to sell me some goods' butby Dece - Huntington's Disease Support Center
Thanks Sonshinesandi - re your first post I showed this to J (he has HD) and he said he would be interested in other peoples experiences this is a good thing as none of his family seem to have this (although his mum and dad will be tested this august) and we have no knowledge, experience or support within the family to try and understand this and see what the future brings. we are speakingby Dece - Huntington's Disease Support Center
Hi Alex My boyfriend had inretrospect symptoms over about 3 years - but the family had no idea - never even heard of HD. Initially diagnoised with Parkinsons,late 2013 about a month ago J advised he had trouble with chewing and his mobilty was as always unsteady. He was on medication s The consulant for Parkinson, suggested maybe HD, took blood tests and 2 weeks later J and his mum went to seby Dece - Huntington's Disease Support Center
Re Dignity its two parts - YES its the part about not forgetting that person is a human living being person and ensuring at what ever stage that person is treated with respect (opinons, involvement, likes, dislikes) AND the more practical side (toileting, helping to feed etc)which may seem undignified but can be handled in a dignified -even matter of fact way. Im thinking my post is quite sby Dece - Huntington's Disease Support Center
These are only my thoughts -....and excuse me if this is maybe not what you have asked..... I work with older people - predomiately dementia sufferers (also having had a grandparent that suffered from this and saw the effect of my mother in coping with this). Of course this is not the same as HD but I have been around end of life care (albeit in a care home enviornment) and how hard it is (eby Dece - Huntington's Disease Support Center
Thats super, why not share good news, everybody hopes that they have that good news. At the end of August 2014, Js mum and dad ill get tested (both inearly 60s). Js only sibling - his brother is waiting to get tested- he has 5 kids - youngest 3 olders 22yrs. All the family hope that its good news.. you take the happiness where you find it!!!by Dece - Huntington's Disease Support Center
Dear All wonder if you have any knowledge, experience, opinons on this ( by the way Im not looking to endorse or berate this product). I live in Europe and have state health care but this I would have to purchase this medication privately - which is not a problem. My friends daughter has ME and fybromalgia and uses LDN has done for a few years - however in disussion with my friend she aby Dece - Huntington's Disease Support Center
I can not comment on whether you should have your child - but I know that when J was diagnosied with HD at 43yr - CAG 46 (only last month) - we sat with his mum and dad last night - who are been tested for HD (no results yet . J and I dont have children, have never wanted children so was not an issue His mum said last night 'my son - I would not be without him'. That broke my heart, theby Dece - Huntington's Disease Support Center
Thank you that is so kind of you and Im trying I really am - trying not too be so morbid for Js sake -hes a half full person - and am half empty person - so not best placed ever to deal with problems. J has been working but his work again have refered him to their doctors again - they are aware he has Parkinsons but the new diagnosis they are not aware off - we are nto being devious J just doesby Dece - Huntington's Disease Support Center
Thanks V, I appreciate your response J has the consultant next week so were hoping he will get some answers ...by Dece - Huntington's Disease Support Center
Dear All Im D and my boyfriend is J and J has been diagnoised with Huntingdons disease less than a week ago, painful as he had originally been diagnoised with Parkinsons 6 months ago (hence as if that wasnt bad enough...) and so overwhelmed by this. Both in our early 40s and both - overall - healthy people. We were not only shocked but both at a loss on how to cope. I live in Europe so thanby Dece - Huntington's Disease Support Center
Hello - J is waiting to see the consultant/nurse. The misdiagnosis was beacuse the consultant had no reason to even suspect that anyone in the family had the disease - ie Js parents, brother, aunt, uncle, cousins, second cousins, grandparents (both sets), niece, nephews - not one sign of this! and even in the diagnosis of parkinsons there was no family history of this. So Ok - I think J is inby Dece - Huntington's Disease Support Center
Thank you very much right now - I feel as if we both have been gave a death sentence (in different ways - and I understand this is not all about me) . Having my own mental health issues for many years - it is impacted by this diagnosis - and how I can support J I dont even know how I am able to cope with myself. I will look on this site when im stronger - as to be honest the full scale of this dby Dece - Huntington's Disease Support Center
Hello I dont use forums like this as Im unsure who will respond and what they will say- but things are bad so I need to say something = so at least Ive said it.. My boyfriend of 10 years has been diagnosed only yesterday with Huntingtons disease. For the past 3 years, his behaviour such as balance, twitching, lack of descision, mental health issues ie anxiety, OCD - this man who was my rock juby Dece - Huntington's Disease Support Center