Barb, that is the most amazing advice I have seen to date for patient, caregiver, family and friends. Absolutely amazing. I think about the future all the time but not like I did in the past. I believe those around us can be in denial and those with HD. I will make it a point for my wife to read this. It is a message I've been trying to get across since the beginning. You could write aby mikee - Huntington's Disease Support Center
Mine is high as well but I do the same thing. Mikeby mikee - Huntington's Disease Support Center
VRE said it well. I was told a long time ago to quit dwelling on the mistake but rather learn from it an move on. I'm not saying this is your situation by any means or that it applies (at the time it did apply to me). We can be our worst critics some time. Reflect on the situation, perhaps write down the good things and then the negative. It may help. Mikeby mikee - Huntington's Disease Support Center
Thanks for sharing. This will help me should I need a different med. Mikeby mikee - Huntington's Disease Support Center
This is truly sad. Thank God for people like him. Mikeby mikee - Huntington's Disease Support Center
We are looking forward to our first grandchild latter this month. My son has no idea if he has the gene nor the baby of course. We do look forward to seeing him although distance is an issue but we can deal with it. I feel there will be treatment in the not so distant future but it's anyone's guess. Everyone has decisions to make and their reasons. Keep this in mind as you go forward. Befoby mikee - Huntington's Disease Support Center
Check out long short term disability and long term disability. It is usually less expensive if through a group plan. I don't know your age but Social Security disability taken in earlier years is substantially different from what you would receive if you work to retirement and get SSI instead of SSDI. Mikeby mikee - Huntington's Disease Support Center
I'm sorry to hear about your loss. I will be thinking of you and your family. No matter what the cause it's hard to lose a loved one. Mikeby mikee - Huntington's Disease Support Center
Talk about difficult decisions......you both had them to make. My heart goes out to both families and I hope you both do well with your decisions. Try to keep in mind the decision has been made and all you need to do now is move forward for the future. Look for the bright spots. Mikeby mikee - Huntington's Disease Support Center
I am so sorry both of you are in this situation. I can't offer any advice since I have nothing to really base it on. Do know that we are listening to you and you are not alone. Mikeby mikee - Huntington's Disease Support Center
None of us come with a warranty. I certainly wish we did, I'm good with warranties. I have no idea what it is like to see a parent or relative being taken by this disease. I lost my Mother at 93 and it was sudden; my sister about the time I was diagnosed, only not from HD. No matter, seeing those we love slip away is not inspiring. Keep the faith, be positive and share your concerns with a communby mikee - Huntington's Disease Support Center
It's tough no matter how you slice it. I don't have a family history being the first diagnosed and I am thankful for that yet my family and children have to bear this burden. There have been some excellent post about testing and I recommend searching them. Being positive, even if you don't feel positive is a help to me. No, it doesn't change your thinking but helps with the burden somehow. Teby mikee - Huntington's Disease Support Center
This is an interesting topic. I don't have any knowledge but would like to learn more. Mikeby mikee - Huntington's Disease Support Center
Heather what you are feeling is something we have all seen and felt I dare say. This is a complicated and difficult illness. That's not to say there won't be any more good days or feelings. There will be. Give yourself time to get your head around things. Not many hours go by that I don't think about HD and my family and what I once was. I am still the person I once was only with a little more tby mikee - Huntington's Disease Support Center
Thanks for the concern. No surgery thankfully. I'm doing better now. Just have to be careful. Mikeby mikee - Huntington's Disease Support Center
Welcome Heather. You are among friends here and help is a keystroke away. I like your attitude toward family. So many don't have that connection these days. If not for family and friends (and this forum) I would be lost. My experience with COE's and Dr's was similar to Vicki's. Be comfortable with your medical team. Keep us posted and the best of luck, Mikeby mikee - Huntington's Disease Support Center
Well Howdy Doodee! Not what I wanted to hear. Just kidding. Let me share the background. About two months ago I broke my back in two places. My HD mind apparently didn't understand I couldn't do what I once did. Normally it does a good job weighing my options since things take place slowly there now. I attempted to move a LARGE limb out of the way so my wife wouldn't try. Well, snap crackle poby mikee - Huntington's Disease Support Center
My hat is off to all of you caregivers. Break it down and maybe it should read care-sacrificers or something like that. From my time on the forum you all give so much of yourselves and that is an attribute many do not possess. I don't "know" you but "thank" you. Mikeby mikee - Huntington's Disease Support Center
Hi everyone. I have a question due to some recent issues about bone density. Does anyone know of a connection between bone density, Osteoporosis, breaks etc in people with HD. If there is a connection, does anyone know where I can get information? Thanks, Mikeby mikee - Huntington's Disease Support Center
A question for you Jasperematt. I am curious how HD was chosen as a disease to follow. It's good that someone did, but how did it come to be the character's disease since it is not well known and doesn't get the publicity so many others do. Just curious, Mikeby mikee - Huntington's Disease Support Center
As stated, everyone is different. The best advice I think is to go to a facility. Talking to phd's and caregivers will give a really good insight. We all present in similar but different ways. Acceptance is not always an easy thing to digest. My story is different from many and similar as well. I don't think anyone will be exactly the same from my reading. You can learn a lot on the forum butby mikee - Huntington's Disease Support Center
Personally, I mellowed in a lot of respects. Addition of stress and anxiety does change things however. No longer do I awake planning out what I will do today. It may be the best I feel all day or not. Mikeby mikee - Huntington's Disease Support Center
I'm here. I've been checking in periodically. I dropped the ball....... Mikeby mikee - Huntington's Disease Support Center
Hope you guys get to feeling better. Take time to mend. Mikeby mikee - Huntington's Disease Support Center
Cognitive testing is just that. It is a series of one on one test in my situation ordered by physician to better evaluate my situation. From my knowledge it is not normally covered by insurance and is on the expensive side. I wasn't aware of the cost until my insurance did not pay. It could possibly give you some peace of mind, it takes several hours and I would imagine there are different typesby mikee - Huntington's Disease Support Center
I tested only after being symptomatic and did not have a family history. I can easily relate to your issues. Being a bean counter I relied on memory and constantly changing information as well as methods. This became a huge task. I couldn't remember or process questions that should have been simple. Hopefully it isn't HD. I get a little offended (shouldn't) when someone tells me that's just yourby mikee - Huntington's Disease Support Center
Barb, I am so sorry for the loss of your Dad. Great looking couple and smiling even with the situation. Thanks for sharing. I will keep you in thoughts and prayers. Mikeby mikee - Huntington's Disease Support Center
Marsha has a lot of HD under her belt. Be happy you are negative. Take your knowledge and use it for the good of others with HD. We need voices and you can be one of many. Mikeby mikee - Huntington's Disease Support Center
Find peace in what you did for your Dad. Please don't second guess what you did versus what you could have done. I am a PhD and didn't know how quickly people can cross the line until I met a fellow a few days ago. I was sharing with a contractor about having HD, my cane and balance issues when another worker turned to me with a startled look and said, "you have Huntington's"? "by mikee - Huntington's Disease Support Center
Whitney, many of us have children and they are asking the same questions. HD can seem unreal and it can be very real. There are so many variables. I don't thing any of us can tell you what to do or what you should not have done. We are a community of people affected and brought together by the same disease. Mikeby mikee - Huntington's Disease Support Center