Posts Tagged ‘Eric’

I am in the early stages of Huntington’s Disease, and I have decided to do an annual raffle quilt for HD research.  This was my first raffle quilt, and soon, I will be starting on next year’s quilt. If you would like to know more about HD, please visit http://www.hdac.org

The Rose 2009 annual raffle quilt, for HD research

The Rose 2009 first annual raffle quilt, for HD research

Make  Me a Quilt…and make it Big!

Make me a quilt, my friend Eric said to me … but … make me a quilt … but … make me a quilt … It had been a very sad week on the forum, and I was sad. So my friend Eric said to me, make me a quilt … but I was sad … a quilt???  Yes, make me a quilt. Uhmm, you want a quilt? Yes, make me a quilt … how big? … big! … like single size? … bigger … like double size? … no, real big! … like uhmm, queen size??? Yes, make me a quilt and make it big!

So I started making a quilt, and forgot about what I was sad about.  But along the way, I got another idea. I decided I wanted to make a nice quilted wall-hanging, as a gift for my HD clinic, and Eric said,  very good. And then I said, I think I will also make a raffle quilt, and it can be raffled for HD research, and Eric said, very good. And so, did I dare, once again, to ask, how big? I said, how about a wall-hanging raffle quilt, and he said, oh no, make it big! Ok, single size? Oh no, make it big! Double size??? Oh no, make it bigger! uhmm, gulp, queen size??? Yes! That’s it, make it big!!!

And so, a small idea, of making a quilt, turned really big! 🙂

And so, my quilt went to: The World Congress!!!

Me and Dan at the World Congress!

Me and Dan at the World Congress!



Carly, from the HD clinic, who helped me so much with my raffle sales, thank you Carly!
















So I made the wall-hanging quilt, and gave it to my HD clinic. And I told them about the raffle quilt. I said, hmmm, the World HD Convention is coming to Vancouver soon, maybe the quilt could be draw there? And they said good idea! And so, I thought my quilt would be at the convention, and the ticket would be drawn, and that would be wonderful. But, I didnt think that I would be there too! And that I would be able to meet my online friends from all over the world! And that I would stand on stage, and that Dr. Hayden and Dr. Leavitt would give me flowers. And that I would be able to speak to the congress, about why I made this quilt. And, that someone very famous would win my quilt.

The Winner is!!! …

The Winner is!!! Drum roll please! NBC news reporter, Charles Sabine!!!!!!!

The conference was awesome! I was so happy to meet Michelle! and Matt! and Jimmy! and Will! and Sherri! she is new to the forum. So wonderful meeting everyone!!!!!!! And i met so many people i didnt know, from all over the world.

Before the conference, my raffle quilt total was at $920.00

And at the end of the conference, the Grand Total was!

Grand Total: $1400.00 

I am so happy and thankful, everyone that contributed to make this nice for me. And during the closing ceremony, I went up front to pick the winning ticket. I spoke for a moment in front of the whole congress, and I told everyone, that the reason I did this, is because I feel so fortunate, to be able to go to one of the best HD clinics in the world, and that because of the good care I am receiving there, that my HD is doing good. And that that was why I wanted to do this, because I’m just thankful that I am able to do this.

And then we picked the winning ticket, and it was for Charles Sabine, the famous NBC news reporter. He had spoken to me just an hour before the draw, came to my table, and admired the quilt, and asked me a little about myself, and why I did this. He bought the very last 4 tickets before the draw. And I am serious, we shook that ticket bag up really really good! That is why, I was kind of blown away, when it was him that won. I would have loved whoever won, but this hit me so strange, that I gasped when his name was called. So he came up and got his quilt, and hugged me, and then Dr Hayden and Dr Leavitt gave me a huge, beautiful bouquet of flowers. I was so blown away, I hugged them both too.

One of the most striking moments for me though, was earlier in the day, when a lady with HD came over to my raffle table, and she was crying, and she hugged me and hugged me and hugged me, and cried and cried. She told me that she read my story, about the quilt, and she said, your story gives me so much hope .. .that is truly what this was meant for, and so that really meant a lot.

Friends Meeting Friends

My friends, Matt from the UK, me, Will from North Carolina, and Michelle from Australia

My friends, Matt from the UK, me, Will from North Carolina, and Michelle from Australia
















And now, for the more personal side of it. I loved meeting my online friends soooooooooooooo much! That meant the world to me. That was the best part of the conference, meeting friends. It was so wonderful meeting Sherri, she is such a nice person. Michelle is so lovely, we cried and hugged when we met, and her cousin Naomi was there, So nice to meet her too. And Willie our marathon man! lol We hugged and hugged, so nice to meet him, and Matt, our junior marathon man! 

Jimmy and the gang

Jimmy and the gang













Got a photo of me and Will and Matt, and Jimmy and Michelle. Yes, Jimmy Pollard was there. Jimmy made things sooooo nice for me. When I was feeling a bit nervous and tired near the end of the first day, he visited me at my table, and introduced so many people walking by to me. Jimmy is so easy-going, real nice person to talk with, and made my day nice. And the next day, my husband and daughter both came, and that was so nice. Dan really enjoyed talking with Jimmy, and Matt came and brought his lunch to our raffle table, and sat and had lunch with us.

I only stepped in and out of a few speeches, for a few mins at a time, I wasn’t really able to focus on that very well, and that’s ok. Charles Sabine, at the end of the day, did an awesome, and oh so funny, wrap up of the days events, and summarized the research speeches into something understandable! That part was sooooo funny, and he had everyone laughing so hard. I was so happy to meet everyone, and to meet new people too.

The Meeting Place

The best part of all was meeting people, my table seemed to be the HDAC meeting place, it was perfect. In between sessions, anyone that wanted to meet anyone from HDAC just seemed to come to my table lol. And Matt came and had lunch at our raffle table one day, that was so nice. And Jimmy came to my table and introduced me to so many people. Next thing you know Matt, Jimmy, Michelle and Will were all at my table at one time, so we got pictures! And i met Robi, and Shana Martin. And Bonos and his wife came by my table.


Dr Hayden at my raffle table

Dr Hayden at my raffle table















Oh, and one time when Dr Hayden was walking by, I snagged him , and got a picture of him behind my table with me, this was very cool. Oh, and uhmmm, lol, all I can say for my husband is this, he liked the food more than anything!  Oh, and the best part of the conference, was the rock’n roll video of Dr Hayden and Dr Leavitt! Theyre wearing tank tops, and playing guitars, and singing rock and roll!!! LOL LOL Then they were kissing cheek to cheek!!!!!!!!!!! LOL LOL Was sooooooooo funny!!!!!!! Don’t expect that out of staunchy looking researchers!!!! LOL

Make me a Quilt!

And so, those four words, make me a quilt, turned into something really big. My friend Eric is still waiting for his quilt. Eric is once again saying, where is my quilt, make me a quilt! But first, I need to get started on Next Year’s raffle quilt. Do I dare ask Eric, how big????? Nooooooo. This turned out much bigger than I ever could have planned. And my husband now says, I think you better make Eric a quilt!!!

Thank you to everyone for your encouragement and support, and for making this such a wonderful experience for me, and thank you so much to Carly, for helping me so much with my raffle, thank you so much! 🙂


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My friend Eric is caregiver to his wife Teresa, and he is raising their two boys. I think being a true caregiver is not a job description so much as an attitude of the heart. I have learned so much from him, about life and friendship, and about the true heart of a caregiver:

Sometimes I do my best blogging on the HDAC, and then I send it over to my blog, and that is what I am going to do with this one. A couple of weeks ago, I wrote about my good friend Gordon, his daughter Kirsty, and his son Michael. I have more friends that I want to share about too. I want to thank all of you for making this place such a great place to be. You all mean so much to me, but there is one person in particular that I want to thank tonight, for being such a good friend to me when I needed one. Yeah I know, he’s not going to like being in the spotlight, but you know what, I want to anyways…smile. Here is a short article about loneliness, then I will talk:

Reader’s Digest article on loneliness and our health:

“According to recent study by Reader’s Digest, lonely people seem more likely to die of heart disease than do the socially active. The study allowed for medical and life-style risk factors-age, smoking, physical inactivity, and signs of heart disease-and found that the subjects with few social contacts had a 40 percent greater risk of dying from cardovascular disease than the rest did.”Loneliness ” said Newsweek Magazine in reporting a similar study, ” can speed your demise no matter how conscientiously you care for your body.” One study of elderly heart-attack patients found that those with two or more close associates enjoyed twice the one-year survival rate of those who were completely alone. “We go through life surrounded protective convoys of others,” says Robert Kahn, a University of Michigan psychologist who studied the health effects of companionship. “People who mangage to maintain a network of social support do best”.

My old world was gone, and this new world of HD was lonely and frightening:

Huntington’s Disease has turned my world upside down. I was diagnosed three years ago as being in the very early stages, memory,cognitive, and some emotional issues. I had been very active in my church, and had a huge social network of friends, but over the last five years that has disintegrated, as I became more socially withdrawn, having trouble making phonecalls, could no longer drive, could no longer focus on conversations that lasted more than a couple mins, and the list goes on. Suddenly HD was putting me into a whole new world, where none of my old friends were. I was so alone. No phone calls, no friends, and I was in grief. I was losing the old me, I was angry and I was terrified, and I was alone, and I had a lot of questions. Coming to the HDlighthouse and the HDAC has been the best thing that has ever happened to me. Caring people, a wealth of information, and knowing that you’re not alone in this. But more than that, I’ve met people that I never would have met, in my old world.

Tired and angry, and needing a friend:

But, a year ago, one person in particular, Eric, became a good friend to me. I was terrified, and I was angry, at HD, for taking away my life, my personality, my friends, but more than that, I was tired of being angry. You can only be in grief and angry for so long, before you even get tired of that. Anger is tiring, and draining. So I wanted to know if there were any good things, any benefits to having HD, so I could let go of this anger. So I started an HD pros and cons thread, and asked people to give me the pros and cons of HD. Well, everyone gave very true and emotional answers, and they gave pros and cons. But the best answer for me, came from Eric. This is what he said:

This is Eric’s story, from May/06, the heart of a caregiver:

“People succumb to HD. Given that downside I have more than a few positive things that have happened through the course of dealing with HD. HD has allowed me to know true compassion. I saw my wife exercise it with her mother. I was able to learn it from her and and eventually show it to her when she needed it. My children have learned it also. I have watched as Teresa has exercised grace in her illness. We as a family have become closer, not the ships passing in the night like so many families become, and that we might have become also. I feel God has bestowed upon us a true purpose in our lives. Teresa has become the tool for three better people. The boys and I have a purpose in caring for someone in her greatest need. I have learned humility as have the boys. We have seen people from doctors and nurses, to teachers, to the people of our town and people in our church offer what they could when they could. We learned what matters in life and what doesn’t. Small moments in time have become larger and more enjoyable. We have all learned to ask for help when we need it. We learned to accept it from those who benefit from giving it. I also have seen a true humanitarian effort on the part of this community. I have seen so many people give beyond what any normal person would give. We have all seen thoughtful well wishes..true compassion..a sharing of ideas, thoughts, feelings, and experiences, all for the benefit of someone else who needs it. I think picking out what sucks is pretty easy. Bad things have happened for sure. But for me at least, bad things happening hasn’t meant a bad life. I get to hear “I love you”, from the boys and my wife more than I ever would have. I get to say it back and mean it more too. Barb…in your tally you may not want to count all that stuff. I skewed it. But you have to count this on the pro side…I can count you as a friend thanks to HD.”


I guess I’ve never really questioned why me, like why was I chosen, what did I do to deserve this, maybe. For me, my question has been why anyone, why this disease. I guess maybe a good question might also be, why not me. I think in life things just happen, and we don’t really know why. I know for me, I don’t really feel like God did this to me and others…I know it’s very valid for some to wonder that….I also don’t think some great enemy out there did this personally to me. I think sometimes in life, things just happen….I was feeling angry, and the only person I knew how to be angry at was God, and God allowed me to do that, because He knew I needed to be angry, for a time. But I was tired of the anger now, and wanted some hope. Eric’s post really touched my heart, and gave me that hope. He did not speak of tragedy, he spoke of HD as being the opportunity in their lives to show compassion. I was so jealous, I was so jealous that he could feel that way, and I wanted that too. I wanted it so bad that I decided to accept that HD had been brought into my life, to not be angry any more, and to trust God again. Eric helped give me back my hope, and that is something that thank you does not even cover.

Taking away my fear:

Eric continues to be a true friend to me, and to so many others here on the forum as well. Recently, when Gordon’s son Michael passed away, it was a very very tragic time for many of us. Eric did what Eric always does. Checking up on people, making sure everyone was OK, just doing what he knows how to do, just being a friend, to anyone that needs one. And when Norma and Scott both passed the following week, it was too much for me, and I’m sure many others. But Eric continued doing what Eric does, being a friend. And when it was all suddenly too much for me, and I broke down crying, and told Eric I was terrified, because Scott was in a lot of torment his last few months, and I was terrified, not of dying from HD someday,
but that I might be trapped in torment, Eric did what Eric does best. Convinced me that that won’t happen to me, and convinced me I was living in a tomorrow that is not going to happen to me, that I need to live in today. How did he convince me of that? I dont’t know. I guess because he is Eric, and he is my friend.

Being a friend:

I once asked Eric, how do you do so much for so many people? I said, aren’t you scared of burning out? He said, well first, I dont do much. People are lonely and scared, and they just want someone to talk to. He said I’m awake 18 hours a day, there is a lot you can do for others in 18 hours, and he said, it doesn’t take much, a simple email, let them know someone cares. I don’t do anything special, it is easy. And he says, I will not burn out, because I only do in a day what I can do. Nothing more and nothing less. It’s easy to be a friend he says. He says I am only paying back friendship that was given to me when I needed a friend. Thank you for being my friend Eric, and for teaching me how to be a friend too. You’re the best Eric!

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