Marsha- Congratulations - I feel so blessed to have you on the site as everyone else also does. You and Steve do not get the thanks you deserve but know that everyone appreciates all your help so very much and don't know what they would do without you. Thanks Sharonby Shar - Huntington's Disease Support Center
I love it!! Sharonby Shar - Huntington's Disease Support Center
Yvonne- I think Eric had some very good advice. I would ask many questions. I am surprised, as well, that the drs actually gave a time period as most will not on HD or any other illness. You will probably know more after your next meeting and getting all your questions answered. Only God knows our time period and many people live longer than their diagnosis warrants. Meanwhile, kby Shar - Huntington's Disease Support Center
Barb- What a beautiful piece made with love for you. You deserve it and I know will thoroughly enjoy it. Sharonby Shar - Huntington's Disease Support Center
My thoughts and prayers are also with you. How blessed your husband was to have had you in his life. We are all here for you. Take care Sharonby Shar - Huntington's Disease Support Center
Hey it might be more of a race if it was between Biden and Palin - Forget Obama and McCain. Most of me thinks more of Palin and Biden than I do of Obama and McCain but I guess it is all politics. I just say may the best man and/or woman win!!by Shar - Huntington's Disease Support Center
I just pray we get the leadership that will lead this country in the right direction and make it much better than it has been lately. Personally, I think I need to vote for the lessor of two evils. I have never felt this way before. Due to many of Obama's associatons and things he has done he scares the daylights out of me. I am not overly fond of McCain either. I actually wish weby Shar - Huntington's Disease Support Center
Since you are back in Kansas do you think you could contact Greg Suter and that he could help you? When I filed for my husband's SSD some years ago I filled out the application and ran the answers by Greg and I know he was a great help to us.by Shar - Huntington's Disease Support Center
Same with us - we finally got a couple orders in and our credit card was charged but we hadn't received the product after almost a month. According to Avicena cards shouldn't be charged until product is sent. Anyway, we finally got all we ordered but the calls inbetween we were told they were having production problems.by Shar - Huntington's Disease Support Center
Congratulations-It couldn't happen to a nicer couple. God works in mysterious but wonderful ways doesn't he? Enjoy a thoroughly fulfilling life together!by Shar - Huntington's Disease Support Center
Please try to get to a counselor for you and your family. That has to be so painful and I am so sorry for what you are going through. Your children are also going through issues due to the way the family is functioning/not functioning. Your husband as well - he just doesn't seem to handle the stress well and may not know what to do so a counselor would be great if you are able to do that. Mby Shar - Huntington's Disease Support Center
Please try to get to a counselor for you and your family. That has to be so painful and I am so sorry for what you are going through. Your children are also going through issues due to the way the family is functioning/not functioning. Your husband as well - he just doesn't seem to handle the stress well and may not know what to do so a counselor would be great if you are able to do that. Mby Shar - Huntington's Disease Support Center
Refer to posting entitled "Decision To Have Kids" which was last posted on 9/16/08. It is not too far below your posting. It has alot of varying opinions on this exact same subject!by Shar - Huntington's Disease Support Center
Thank you for the link into this article. It sounds very promisng and is very good news. Thank you so much also, Marsha, for all you do and all your deciphering.by Shar - Huntington's Disease Support Center
I wasn't going to reply to the original message as this particular subject has been on the forum many times and there are different sides that individuals are on so to speak. My husband has HD. My children have not been tested. Before my daughter and her husband decided to have children they did alot of thinking. Their thought was that to "pick and choose" as pgd does would basicaby Shar - Huntington's Disease Support Center
I filled out the application for my husband when he applied for SS Disability. It was approved on the first go around which I was told was unusual. I did get some help from a person at one of the HD Centers close to my state. He told me how to word some of the answers which I did. I wonder if a HD center of excellence, etc. close to you may be able to help you.by Shar - Huntington's Disease Support Center
Stephen, What a wonderful husband you are. We realize it is not easy but admire you for what you are doing as it is not easy. Your wife is very fortunate. My thoughts are with you. Take careby Shar - Huntington's Disease Support Center
Alice- You are in my thoughts and prayers. You shared a rare kind of love many people do not find in a lifetime. What a blessing to have shared that. What a blessing he found in you as well and I know your feelings are mutual. You know you have many friends in here so you will never be alone. Take care Sharonby Shar - Huntington's Disease Support Center
We have ordered the neotine for quite sometime and had good service, HOWEVER, we ordered the bulk on Aug 12 as they said that would guarantee us the product as they were out of the packets. We still haven't received the product. I again ordered packets on Aug 20 as they were available. Still haven't received the packets either. After probably 2-3 emails and probably 4-5 calls someone finallby Shar - Huntington's Disease Support Center
I have been watching to order the sachet packets for quite sometime and have called a couple times. They keep saying it will be available in a few weeks. Both the packets and bulk were out sometime ago. Finally, the bulk was in stock a couple weeks ago and I ordered one container of the bulk a week ago today. We still have not received it. It did let us order and said it was in stock andby Shar - Huntington's Disease Support Center
Carla- I am so sorry for what you are going through. Yes, HD is in our lives daily, however, we try to live it as if HD is NOT OUR LIFE but our life has the challenge of HD in it. Some have cancer, strokes, MS, diabetes, HD, etc. although granted some are tougher to deal with than others and it can always be worse. Sometimes we also need to try to take one day at a time - no one is guaranby Shar - Huntington's Disease Support Center
Congratulations and I hope the aches and pains subside. Sharonby Shar - Huntington's Disease Support Center
Marsha- It is wonderful to hear positive news. We all thank you and Steve so very much for doing what you do. Without you we would definitely be very lost and not nearly as informed. Thank you so much!! Sharonby Shar - Huntington's Disease Support Center
Happy Birthday Barb! You brighten many a day with your posts. 51 is so young - age is only a state of mind. Have a great one!!by Shar - Huntington's Disease Support Center
Hi, I appreciate all your replies. I just feel that 30,000 has been used for years and since many people look at illnesses with higher numbers to correct that, the 30,000 number should be moved up since there are definitely more than the original number quoted that have HD and many more at risk. Get a cure or help and we could care less about the numbers right!!by Shar - Huntington's Disease Support Center
Me again - I did it -well, actually it automatically went to the article. I don't know how this happens but it is awesome!! Sharonby Shar - Huntington's Disease Support Center
HI, I am sorry but I don't know how to get a link on here and to have it highlighted so you all can click on it. My son called us this morning and told us about this article. It is great news. It seems scientists at Harvard have created stem cells for 10 genetic disorders which allow the researchers to watch the disease develop in a lab dish. Huntingtons was one of the stem cells creby Shar - Huntington's Disease Support Center
Steve- Thanks for sharing. I also am guilty of doing what you do. I, too, feel uncomfortable in silence and can be impatient but this teaches me a great lesson. My husband can express ideas slowly at times and I try to be patient but that is not always the case but I will remember what you have written and it will help me be more conscious of his effort and many others as well. Thank yby Shar - Huntington's Disease Support Center
Just curious - every since I have heard of the Huntington disease all articles written on the illness states that 30,000 in the US are affected with it and many more at risk. How long does it take to change those figures. I know it is very well over 30,000 persons who have the illness. Just look at this message board - it also seems when I mention the illness someone knows someone who has itby Shar - Huntington's Disease Support Center
Marsha- I read in our local paper about 6 months ago where our County was going to have an insurance policy in which people who were not covered by another health insurance could become part of this "group" policy. This would be offered to people who live in our county. I do not know any of the other details. Is there something your county might offer such as this?by Shar - Huntington's Disease Support Center