So sorry to hear your news Sylvia, Please believe that Huntington's Disease has nothing to do with God's will. What kind of a God would do that to anyone? It's got way more to do with the 'other' guy, I think. Positive test results are never easy to hear, but we all know how you feel. Big hugz... JJby JJ - Huntington's Disease Support Center
I must admit Eric....the thought of pecan pie was definitely on my mind. Does anyone know if these nuts and seeds are recommended to be eaten raw? I heard somewhere that cooking destroys the goodness. Please tell me they can be roasted...I am such a nut freek! Salivating......JJby JJ - Huntington's Disease Support Center
I was just wondering if anyone knows whether pecans have the same benefit as walnuts? They taste so similar...are they from the same family? I love them both. JJby JJ - Huntington's Disease Support Center
This is the best advice for when you're not coping too well with life..... TWO DAYS There are two days in every week about which we should not worry, two days, which should be kept free from apprehension and extreme anxiety. One of these is yesterday, with its mistakes and cares, its faults and blunders, its aches and pains. Yesterday has passed forever beyond our control. All the moby JJ - Huntington's Disease Support Center
Hi Mary, Wow!!! You have been on such an emotional roller coaster....and now this. It's about time there was some good news... (apart from your precious baby niece that is.) It always gives us heart when we hear that someone who was sure they were positive, tests negative.....maybe that will be the case for our (as yet) untested loved ones. I'm also relieved for your children...theby JJ - Huntington's Disease Support Center
You know, the one thing that really helps me in reading what you guys have to deal with on a daily basis, is the perspective I get. If I ever get to feeling sorry for myself....I just come here and listen to what you are all going through and it makes my problems seem so small by comparison. I remember attending a lunch for pHD's and their carers a couple of years ago and meeting a wonderfby JJ - Huntington's Disease Support Center
Hi Mary, Yes I believe that OCD is part of HD in some people. Though it exists as a separate entity for others without HD. My husband has not long started with small obsessions. I have a feeling these will get worse with time. He is obsessed with closing windows if he sees one cloud in the sky. He is so sure it is going to rain, he has to close every window in the house. I went out with mby JJ - Huntington's Disease Support Center
Hi deedee, My husband's first symptoms were his erratic driving, some choking, facial tics and relentless shuffling of his feet. Strangely, after he gave up work, the driving improved, the choking did too, but the tics and head movements got worse. He was always a good eater but his appetite went into overdrive and now he makes cups of tea and coffee all day long, each has to have food to goby JJ - Huntington's Disease Support Center
Hi Myrna, I'm only new to the forum and had just begun to know Rikki's story. What an inspiration you both are. A wonderful Girl and an amazing Mum. Our thoughts are with you and yours. Sending much love from Australia. JJby JJ - Huntington's Disease Support Center
Hi Mary, We had to wait several weeks here in Australia for my husband's results. So having to wait only days is amazing. If and when my children decide to get tested, I know the wait will be agonizing. We'll be thinking of you and willing the result to be negative. Here for you no matter what. All the best, JJby JJ - Huntington's Disease Support Center
Hi Mike, Welcome to you. Lots of support here. That crazy world you spoke about is getting crazier by the minute! And the crazier it gets, the more support you need...we are all here for you. You will need those who know and understand what the days ahead will bring. They will give you and your wife 'survival' tips to cope with the various situations as they arise. No two people'by JJ - Huntington's Disease Support Center
Hi Mary, Thinking of you all the way from Australia! Whatever the outcome, we're all here for you. All the best, JJby JJ - Huntington's Disease Support Center
Yep...got to keep your sense of humor!! If you didn't laugh...you'd cry and I know what I'd rather be doing.! I have friends who send the funniest emails....so precious. Really keeps our spirits up. All the best JJby JJ - Huntington's Disease Support Center
Hi Bonnie, I'd like to make you feel welcome too. Our stories are so similar. My husband is also 60, diagnosed in 2004. We have 2 children, our son is also 37 and we have a daughter 29. I live in Australia. Do you have grandchildren? We have 4 grandchildren (all at risk) ranging from 12 down to 3. Three were already here before our diagnosis and the last one was 'hatching' when weby JJ - Huntington's Disease Support Center
Hi Mary, What a terrible time you are going through. I thought of Job when I read your post. If HD is present in your genes, then you will be able to prepare yourself and other family members for what is coming. We can't go through these things alone. There is a lot of support here. We all identify with what you are feeling and the fact that you have faith will sustain you and carry througby JJ - Huntington's Disease Support Center
I am totally with double j on this one. Don't castigate this nursing student for his/her ignorance. Education and understanding are the key to spreading the word. And it needs to be spread in the medical community before it can be dealt with by people in general. Ditto on reading the posts here.....these are expressions straight from the horses mouth. Nothing teaches like experience...andby JJ - Huntington's Disease Support Center
Hi Myrna, How are things going for Rikki and yourself? Has anyone been able to help you? We all should be able to do what is best for those we love. Sometimes the best is to do nothing but make them comfortable. We should be allowed to 'love them to death'. When someone has a terminal illness that involves horrendous pain, why can't doctors 'disconnect' the pain centre of the brain soby JJ - Huntington's Disease Support Center
Hi, I'm JJ. I live on the east coast of Australia and have a 60 yr old husband diagnosed with with HD in 2004.(CAG's 43) We have 2 at risk children and 4 grandchildren. There is no documented family history, so we were all shocked when my husband was diagnosed. It appears as though the gene came through his mother and maternal grandmother. Our children have chosen, at this point not to be tby JJ - Huntington's Disease Support Center
Isn't it ironic that there are those who want to throw their lives away, (for whatever reason) and there are those who desperately want to hold on to theirs and can't? What a shame we can't trade? The ones who want to throw their life away could swap with the ones who want to live! It's such a precious thing...life. The fact that we exist is a miracle. To all those obscenely wealthy peby JJ - Huntington's Disease Support Center
Skmf...Ask your friends who've been to Oz if they ever saw any of our 'deadly's'. Like the kangaroos, they aren't exactly running down the main street! We have snakes and spiders and other 'nasties', but we don't see them very often. They are mostly in the 'bush'...outside the cities. So 'come on down' under! It's good to know you didn't actually chooses to go to the UK instead of Oz..by JJ - Huntington's Disease Support Center
Hi skmf, I can't believe anyone would choose the UK over OZ! Australia is the ultimate destination! We have everything here....the best beaches, great snowfields, deserts that go on forever with a big rock in the middle. (Ularu) Some may not find that too appealing but OZ is a whole bunch of desert in the middle, and it's a big middle! But round the edges it's awesome! This place isby JJ - Huntington's Disease Support Center
Wow Trudi, what an emotional minefield you are treading! It is fairly obvious from your expressions that this is the age old problem of objectivity. It is always so easy to see what others should do, but always difficult to know what we should do with our own lives. Objectivity allows you to see the whole issue unclouded by emotion. That's why I totally respect you for bouncing this offby JJ - Huntington's Disease Support Center
skmf...thanks for the welcome. I'm from Downunder. We have restricted licenses here in Australia. My husband has a restriction of 100km from home provided he is declared medically fit by the doc. As his illness progresses he may well be restricted even further. They are also talking about introducing a "Local License" for older drivers. This allows them to drive 10 km from home depeby JJ - Huntington's Disease Support Center
In our case, some symptoms did come and go. Driving, for example, a few years ago my husband's driving was terrible! He was all over the road! This was before his diagnosis and one of the things that indicated that something was wrong. After going through the testing process,and being diagnosed, we realized that he was at the crossroads....being able to continue working or not...we decby JJ - Huntington's Disease Support Center
We are also in this category. No documented family history. My husband's diagnosis came out of the blue. His symptoms were becoming very obvious and tests showed nothing. Finally we were referred to a neuro who was as surprised as we were when the results came back from one final test...a dna. His CAG's were 43. My husband's mother is 83 and is probably the 'transmitter'. She has very mildby JJ - Huntington's Disease Support Center