WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

Wall-to-Wall Shelly Townsend at 5:28 am, October 1 says

Wall-to-Wall Carissa Krivanek at 9:55 pm, September 17 says

hello how are u ??? Carissa ;)

Wall-to-Wall Jessica Cadeau at 12:18 pm, September 16 says

Thank you Crystal for the absolutely wonderful welcome. It is greatly appreciated and I am so glad that I joined this site! Thank you again!

Wall-to-Wall zena sutton at 5:50 am, September 16 says

Hey, Hope your well?? What have you been up to???

Wall-to-Wall Carla Hutchins at 5:38 pm, September 11 says

Thank you so much for that welcome. We (being myself and my kids), have been having some pretty rough times in the last few months and it's good to know that I have this wonderful place to talk and vent...Thank you again and god bless!!

Wall-to-Wall Laurie at 2:04 pm, September 9 says

Crystal, Thank you for the welcome.........Laurie

Wall-to-Wall echo paradise at 2:22 pm, September 8 says

well i just wanted to thank you so much for the comment :) echo :)

Wall-to-Wall Kelly at 8:15 pm, September 2 says

Hi Crystal, Stopping by to say hi! Hope all is well your way!

Wall-to-Wall Gene Merlino at 6:22 pm, August 30 says

Hi Crystal.......Hope your having a good weekend, love your music.

Wall-to-Wall jenny at 4:06 am, August 27 says

Glad to hear that you're on the mend Crystal. We have had some nasty bugs this winter down in Oz. I swear they are getting meaner by the year! (((hugs))) to you from a safe distance ......jenny

Wall-to-Wall Anne Duvall at 8:40 pm, August 25 says

Dear Crystal, Thanks for the concerns, regarding Fay. Three months ago we moved to Peachtree City, Ga. to be near our daughter, whose husband's is displaying systoms of the ugly beast, HD. My husband is into his 8th with Parkinson's disease and his neuro is located at Emory. I hope you are feeling better soon, hang in there , you have a very full plate for such a young lady. Love & Hugs, Anne

Wall-to-Wall Kelly at 10:25 pm, August 23 says

Hope you are having a great weekend Crystal! I hope you are feeling better also!!

Wall-to-Wall jenny at 9:00 pm, August 23 says

Hey Crystal, sorry to hear that you are not well now. Hope your Zoee is a good nurse. Lots of vitamin C, olive leaf extract, fluids and rest. Sending lots of Get Well wishes....and (((hugs))) Hope you're feeling better soon. jenny

Wall-to-Wall Erin Concannon Bolinger at 3:11 pm, August 22 says

thanks so much for the kind words- this website has helped me to not feel like an island... it is strange really, growing up in the 80's and 90's , 2 family members had hd and they both just felt so alone, I wish that this very helpful community had been around for my bumpa and my Uncle... but now that it is here for my father and for myself and all the rest of the family affected by HD- I already feel the comfort blanket. Thanks again Crystal for being such a beautiful person!

Wall-to-Wall Desirae at 12:14 am, August 22 says

aww thankyou, yes, zoee is one of my friends. i love this site i think it is great! there is a lot of helpful information too. takecare......Desi♥

Wall-to-Wall jenny at 5:55 am, August 21 says

Thanks for your kind words Crystal. I noticed that your Mom is getting married again. It's a strange feeling isn't it? But life goes on and no one should have to do it alone unless they choose to. Be happy that she will have a companion to share the rest of her life with. He will never replace your Dad, but hopefully he can be a good friend to the rest of the family. Have you known him long? Do you think she is making the right decision? What does your heart tell you? My very best wishes to you and Zoee. And congratulations to your Mom. (((hugs))) Jenny

Wall-to-Wall Ashley Johnston at 4:35 pm, August 20 says

Hey, and thanks for reaching out to me. I apologize for the delayed response. I have been a little crazy with work. I hope you are having a good week. I am glad it's already Wednesday! Talk to you soon.

Wall-to-Wall lisa porteus at 7:22 pm, August 17 says

HI CRYSTAL ,IT LISA HOPE YOU DOING OK MY FRIEND ,HOWS YOU AND YOUR FAMILY

Wall-to-Wall Sandy B at 3:25 am, August 17 says

Hi Crystal, It is nice to find groups like this. Thanks for the warm welcome. I hope to figure out how everything works! I live in a small town, so it seems strange to know so many people that are affected by and have HD. I have a freind that got tested 2 years ago (after her brother passed). He was a nice man, devoted to his children. Their family has been affected a lot. She once asked me to be available to her husband if he needs someone to talk to. It was one of those moments in time when learning somone else was going through the same emotional rollercoaster was a strange relief. My brother in law is 61and has showed symptoms for a long time. He recently lost his house on the ranch and all the ranch belongings to a fire. HD has played a cruel role in his retirement dreams. His wife (my husband's sister) had a heart attack a year ago, so life is strained for them. (she had a stent put in and is doing good) His oldest daughter is very close to us, and we are her only source of emotional support. His other 2 children (all adults) do not seem to face his reality. The only choice is to live each day like there is not HD looming and altering life. Live life, not let the impairments and "future impairments" take over.

Wall-to-Wall Anamaria Popescu at 5:41 pm, August 16 says

thank you for your comment.. comments can really brighten up anybody's day .. and yes it is very hard.. at times i feel too hard. but we all keep going and keep on praying.. thats all i can do.. sometimes i sit and think and then just fall apart.. but im learning that there is no point in worrying so much . i need to just enjoy whatever time i have with them and make the best of it.. im not really sure if he is showing any signs or if is cuz im paranoid.. his family actually strongly believe he does not have it.. and i deep down do too but its still hard beacse u never know.. this disease just takes you by surprise.. watching his sister is i think the hardest thing.. and now with his niece even harder.. i think everyone pretty much accepted his sister and always figured tey would have little kathleen to remember her by and now i think they feel like everything is being taken away.. i dont know.. my boyfriend plans on getting tested before we decide to have chilren and his other sister who is at risk has made the decision not too. im really up in the air about it.. i mean on one hand i do so it can come back negative and make my dreams come true but then again i dont because i still like having that Hope to hold on too.. but either way im here and staying here. i would rather spend 10 years or however long we had. with someone who completes me and makes me so happy then 30 years with someone who im not happy with.. im really sorry to hear about your sitution but it is nice to see you positivity throughout all this.. :)

Wall-to-Wall DQL at 2:39 pm, August 16 says

I have one sister, Kristen, and one brother, Scott. My brother has not been tested and goes back and forth as to whether he believes he's positive. We all believe he is. My sister has been tested and is very involved in HD.

Wall-to-Wall Joseph Romo at 4:01 am, August 15 says

also my myspace is myspace.om/josephr916, Im not on it as much as this site but yeah thats my address

Wall-to-Wall Joseph Romo at 3:59 am, August 15 says

Thanks, Im really excited about the walk-a-thon going on in Oct. Im just excited about in general you know? Its nice to see all these people come together for one goal....ten years ago I felt that my family was the only family in the world who deals with HD. lol. Im sorry about your dad. I really am. My mom is progressing, I try to visit her as much as possible (she stays with my bro) . But yeah it def gets hard, I feel like helping out and being active is the only way that I can fight back u know?

Wall-to-Wall Sue McGann at 11:57 pm, August 14 says

Chrystal, I LOVE your music. Hope you and your family are doing well today. Live each day to the fullest.

Wall-to-Wall Kelly at 1:47 am, August 14 says

Thanks for commenting on my journal entry, it made me feel a lot better! Congrats on being site leader, that's awesome! I hope your daughter feels better soon. My son had pneumonia this past February, not fun and he was only 9 months old. School is going good, the days I'm in class are sooo long. I can"t wait to be done and out there taking care of people!

Wall-to-Wall jenny at 9:11 pm, August 13 says

Hope Zoee is feeling better soon. (((hugs))) jenny

Wall-to-Wall Tera Thomas at 12:20 am, August 13 says

I think the yellow badges look great....we are brunettes so red is supposed to be our color, but I think the yellow works...LOL

Wall-to-Wall Jacey Mukka at 11:14 pm, August 12 says

She got a new pump and it's working fine for her... I hope Zoe get's better!

Wall-to-Wall Karen Bradley at 2:56 am, August 10 says

Hey Crystal.......Thanks for the add. If you want to chat just leave me a note. Hope everything is going ok for you:) I'm just taking one day at a time right now.

Wall-to-Wall Jacey Mukka at 10:15 pm, August 9 says

Thank you, I love your playlist too! I'm fine and everyone here is fine... how is are you?

Wall-to-Wall Kelly at 6:38 pm, August 9 says

Thanks so much for inviting me to this wonderful site! Hoe you are having a wonderful weekend!

Wall-to-Wall jenny at 8:35 pm, August 8 says

Thanks, the last thing I wanted to do was add to your heartbreak. (((hugs))) from Down Under, Jenny

Wall-to-Wall bobbi rudicel at 3:40 pm, August 8 says

hi! thanks for the friend request. its always nice to meet new people. hope all is well with you. have a great day.

Wall-to-Wall jaq at 8:20 am, August 8 says

Hi Crystal Loving the music on your profile hope things are ok over the other side of the pond Much Love Jaq

Wall-to-Wall jenny at 6:19 am, August 8 says

I really wanted to apologise if I caused you any grief Crystal. I'm just not ready to confront the future at this stage of my husband's illness. I'm not ready to see where it is going to take him. My heart is breaking for him already. But I certainly meant no disrespect to your Dad, who I'm sure was a wonderful person. No hard feelings? Jenny

Wall-to-Wall jenny at 6:07 am, August 8 says

Sorry about the slow connection on dial up Crystal. It takes forever to get to IM on this old computer!

Wall-to-Wall LizzieAnne at 8:20 pm, August 7 says

Krystal, I felt compelled to leave a comment regarding your fathers latest pictures. Thank you !! i took great comfort in viewing them! I was not sure if a person in very late stages could still find joy in life and your pictures allowed me to see that it's possible. Your father's spirit really showed through in the photos and I got the impression he was a really great person with a special spirit that despite adversity his spirit really showed through. He reminds me of my husband. You are really blessed and thank you so much for sharing those with me. I can't tell you what a difference it made to my future outlook with my phd spouse. LizzieAnne

Wall-to-Wall jenny at 9:09 pm, August 6 says

Thank you Crystal, it made my heart break to see him like that. I know it must have broken your heart to see him like that too. I saw him in the family photo Zoee posted...he was hansome! Much love, Jenny

Wall-to-Wall jenny at 3:25 am, August 6 says

Dearest Crystal, please don't be offended, but these photos of your Dad I'm sure are not what he would like the world to see. I'm sure he'd like to be remembered as the man he was before HD took its toll on him. I find them upsetting to tell you the truth. I know that my husband is on his way to that place and it's very confronting to contemplate it. I know you love him to bits and I don't for one moment suggest that you should not post photos of him. I just know that my husband would be horrified to be presented to the world as a shadow of his former self. He would want to be shown as a strong virile man, not one conquered by disease. Please don't be upset with me for pointing this out to you. I don't mean to upset you. Jenny

Wall-to-Wall Zoee Zachary at 4:46 pm, August 4 says

I LOVE YOU MOM

Wall-to-Wall Robert Cleveland at 11:48 pm, August 1 says

No more Steppenwolf? Wow...that's harsh! ;)

Wall-to-Wall Meghan O'Donnell at 9:42 pm, August 1 says

hey how are you today?

Wall-to-Wall Clinton Sell at 3:42 pm, August 1 says

Hey Crystal,Nice to have you as a friend.God bless you and your family.My wife LOVES Michael Buble too.Home is a awesome song.Peace and take care.Clinton

Wall-to-Wall jenny at 10:13 pm, July 31 says

Sorry, just realized that there are two Crystals!!! Seniors moment....have to concentrate more. Duh!

Wall-to-Wall jenny at 8:59 pm, July 31 says

Thanks for the frienship request sweety, but your already on my list! I'll give it a tick though because that might make us double decker friends! Have a great day...(((hugs))) from Down Under, Jenny

Wall-to-Wall lisa porteus at 8:30 pm, July 31 says

HI CRYSTAL,THANKS FOR YOUR COMMENT ,HOPE YOU ARE HAVEING A GOOD NITE,LIKE YOUR MUSIC

Wall-to-Wall Laura Cleveland at 4:48 pm, July 31 says

Hi Crystal. Thanks for reaching out... I basically know people through Rob's page, but it's nice to make the contact myself, too! We're doing well here. Keeping busy with the kids and getting items ready for the Celebration of Hope gig in September. Hope all is well with you and yours. Laura

Wall-to-Wall Cheri DeLargie at 4:00 pm, July 31 says

Hi Crystal - thanks for the note - made me smile :) We are hanging in - Bob is had a few challenges a few weeks ago - made some changes to his medication - he is better now - and we are enjoying as much family time as possible. How are you doing? Anything new?

Wall-to-Wall Krystal at 3:55 pm, July 31 says

Thanks for the add, Crystal. Take good care.

Wall-to-Wall lisa porteus at 10:38 am, July 31 says

hi crystal i hope you are going good ,from lisahugsx

Wall-to-Wall rebekah upperman at 7:25 pm, July 26 says

Hi Crystal, Thanks for adding me as a friend. This is an awesome site and is just so supportive and helpful to all of us!! Such a wonderful group of people who just stand together and help each other. I hope you are doing ok!! Keep in touch...and again, thanks for accepting me as a friend!!

Wall-to-Wall Cheri DeLargie at 12:38 am, July 22 says

Hey Crystal - it's been a while - hope all is well :)

Wall-to-Wall lisa porteus at 1:56 pm, July 20 says

hello crystal ,its lisa hope your all ok

Wall-to-Wall Robert Cleveland at 12:45 pm, July 16 says

Thanks for the kind words! :)

Wall-to-Wall Melinda Wagner at 7:04 pm, July 15 says

Sounds like we have a very similiar life (lots of HD). Thanks for inviting me as a friend. I didn't realize there was a support group "HD SUCKS" on myspace.

Wall-to-Wall Nellie olsen at 2:33 pm, July 13 says

Big hugs Hope all is well with you takecare

Wall-to-Wall Mary Martin at 4:32 am, July 13 says

Hi Crystal This is Mary. I am pleased to be your friend, thanks for that. We have some things in common. I have 2 brothers who ran our local HDSA. They are the ones who are not HD positive. Now they are older and other family members assist, but we have a new President now. Anyway, when I was young we made crafts to sell at Christmas Bazaar. Then we graduated to HoopaThons. Now even Art Sales. But we don't have a local webpage. I would like to help w/one. I even offered. Not sure why not, but hope to have back soon. My mom was one of the ladies who helped with establishing our local chapter. She always adored Marjorie Guthrie, her idol. I miss my Mom. This whole thing would be much easier w/her by my side. I can only hope she's getting the big place ready for us. She probably is. How are you? I adore the name of the HDSucks name. We would never get away with that here, but I do say tha alot!

Wall-to-Wall Meghan O'Donnell at 9:37 pm, July 5 says

hey what did you do for the 4th of july

Wall-to-Wall Robert Cleveland at 8:58 pm, July 4 says

Hi Crystal, just stopping by to listen to some Steppenwolf! Thanks!

Wall-to-Wall Meghan O'Donnell at 4:32 am, June 26 says

hey thats a great attitude to have

Wall-to-Wall valerie goldsworthy at 6:06 pm, June 21 says

I would love to chat, we have a lot in common. Hope to hear from you soon.

Wall-to-Wall Ashtin Hoegsted at 4:14 am, June 21 says

well thanks for the welcome. how are you?

Wall-to-Wall Janice Watsky at 3:47 am, June 21 says

Crystal, where in OK are you? And thanks for the great welcome:)

Wall-to-Wall Cheri DeLargie at 5:01 pm, June 16 says

Hi Crystal - loved your "thought" :)

Wall-to-Wall Jennifer Tonelli at 1:27 pm, June 12 says

I missed you at convention. I thought I'd get to meet you. How are you? Everything OK? Best wishes!

Wall-to-Wall Gabrielle Edward at 12:34 am, June 12 says

thank you so much for the comment on my blog. it really is sad that she has to go thru this so young. it makes it worse that there was only a 1% chance of her gettin it from her bio mom who is currently 23 and in stage 5 its just so hard to believe that such bad things happen to such great people.

Wall-to-Wall jenny at 3:13 am, June 8 says

Hi Crystal, just wanted to say G'day from Oz. How are you doing? I see you didn't get to go to the convention. I am looking forward to hearing all about it from those fortunate enough to attend. Hope all is well with you. Jenny from Down Under.

Wall-to-Wall Cheri DeLargie at 1:30 am, June 8 says

Thanks for the comments on Katie's speech. We are very proud of her and we get our strength from her and her demand for a cure :)

Wall-to-Wall Cheri DeLargie at 1:41 pm, June 5 says

Amazing story - Amazing pictures - Amazing Family

Wall-to-Wall Jennifer Tonelli at 11:51 am, May 29 says

HI Crystal. Haven't talked to you in awhile and wanted to send best wishes. I look forward to meeting you at the convention!

Wall-to-Wall Lynn Herzog at 1:42 am, May 15 says

I hope all is going well with you and your family!

Wall-to-Wall Donna at 3:58 pm, May 14 says

Hi Crystal, hope all is well with you. Love your site. Hugs and kisses...Dee xo

Wall-to-Wall Jennifer Tonelli at 1:05 pm, May 14 says

How do you get your playlist to randomize the songs. Mine isn't working.

Wall-to-Wall Jennifer Tonelli at 12:32 pm, May 14 says

I am very happy. My hublet is coming with me to the convention. You are going, right?

Wall-to-Wall Jennifer Tonelli at 2:05 pm, May 13 says

I sent you an email to your address because it keeps giving me an error to msg you through this site. You may want to check it out with Chris Seta.

Wall-to-Wall Jennifer Tonelli at 1:01 pm, May 10 says

It did it again! I typed you this long email msg and when I hit send it gave an error! Well, best wishes for your day!

Wall-to-Wall Robert Cleveland at 8:36 pm, May 9 says

Your playlist is smokin'!

Wall-to-Wall Jennifer Tonelli at 6:05 pm, May 9 says

I just left you a long reply email then when I hit send it knocked me clear out of windows explorer. I am sorry! I'll have to write more later.

Wall-to-Wall Jennifer Tonelli at 12:16 am, May 8 says

I never take my bracelet off for that very reason! :)

Wall-to-Wall ~*CrYsTaL ZaChArY*~ at 12:10 am, May 8 says

I HAVE A CURE HD TATTOO ON MY WRIST. I USED TO WEAR THE CURE HD BRACLET BEFORE I GOT MY TATTOO. I LOVE MY TATTOO, I NEVER LEAVE IT AT HOME BY ACCIDENT.

Wall-to-Wall Jennifer Tonelli at 12:04 am, May 8 says

I love your tatoo! I wear a bracelet because I just don't have the nerve to put it on my body. But leaving the space for "D" is what I love most about it! Nice to meet you!

Wall-to-Wall Gene Veritas at 5:11 am, April 23 says

Dear Crystal, On April 9 I visited Isis Pharmaceuticals, Inc., which has developed a unique technology for combating HD. This is the topic of "Building a 'laser-guided missile' to attack Huntington's disease," my latest entry at www.curehd.blogspot.com. Isis hopes to start testing a drug in humans in late 2010. If it works, Isis will make history by alleviating the suffering of tens of thousands of people affected by HD and their families and give new hope to those who are at risk. Yours in the struggle, Gene Veritas

Wall-to-Wall Robert Cleveland at 12:48 pm, April 21 says

Hi Crystal, thanks for the add! Hope you are well today!

Wall-to-Wall Mary at 8:25 pm, March 11 says

Myspace Comments @ MyNiceSpace.com

Wall-to-Wall Matty Ellison at 2:15 am, February 20 says

Matty Ellison Hiya, Ive decided to start doing my bit for HD. In June this year im going to be cycling the length of the UK in aid of HD. Ive made a page on both the American and UK giving sites so if you can sponsor me i would really appreciate it. Even if you can't sponsor me please take a look and email it to people you know, every little helps. The US site is www.firstgiving.com/matthewellison The UK site is www.justgiving.com/matthewellison If you arent from either country please donate anyway as it will convert your donation into pounds or dollars. Thanks alot! Matt.

Wall-to-Wall Denise at 6:18 am, December 26 says

MyHotComments
MERRY XMAS

Wall-to-Wall Tree M at 3:29 am, November 27 says

Thanks for the invite. Look forward to talking to you.

Wall-to-Wall amy stapleton at 5:41 pm, November 22 says

Myspace Codes: MyNiceSpace.com

Wall-to-Wall Angela Coleman at 3:41 am, November 22 says

Wall-to-Wall amy stapleton at 2:45 am, November 15 says

Glitter Graphics & Comments

Wall-to-Wall Marilyn Mask at 1:58 am, November 8 says

thanks for adding me as a friend..you were the first here...im still overwhelmed...

Wall-to-Wall Nellie Olsen at 1:35 pm, November 4 says

Thanks for the invite take care

Wall-to-Wall Rhonda Holscher at 2:22 am, November 2 says

Thank you for the welcome.

Wall-to-Wall Angela Coleman at 5:54 am, November 1 says

Wall-to-Wall Denise at 6:38 pm, October 31 says

MyHotComments / HotFreeLayouts

Wall-to-Wall Denise at 5:49 pm, October 28 says

Wall-to-Wall emma sutton at 9:35 pm, October 27 says

thank you love. its a great community. thinking of you x

Wall-to-Wall Lynn Herzog at 11:11 pm, October 24 says

Nice to see some fellow Myspacers!!
Get More at COMMENTYOU.com

Wall-to-Wall Tawnya at 4:56 am, October 24 says

Yes it has been awhile and I'm very sorry for that. I have had to work on a few things to get out of that dark place again, I'm getting back to the old me and doing pretty well. I have looked at your myspace and I'm sorry I was not there for you, but you know you are more than welcome to call any time.

Wall-to-Wall amy stapleton at 1:39 am, October 24 says

Wall-to-Wall Melinda Crowell at 9:51 pm, October 20 says

Hey! It's good to see people from myspace on here! Hope you're doing well!

Wall-to-Wall Heather Dugdale at 11:58 pm, October 18 says

Hi. Were new here! Seems like a lot of nice people are here. Look forward to talking to you.

Wall-to-Wall amy stapleton at 8:58 pm, October 17 says

You joined us! Yay! Im so excited. Now you need to get your sister and mom to join too. =)

Wall-to-Wall Robert Antón Patterson at 6:19 pm, October 17 says

Welcome to the Site!

Wall-to-Wall Denise at 4:18 am, October 17 says

Welcome to WeAreHD.org - Great to have you hear!