Posts Tagged ‘hope’

yahoo 11

I am very happy that i was able to make this little sweater for my grandaughter for Easter. I only decided 4 days ago to do it, and i didnt have a pattern, but i was pretty sure i could do it. I kept ripping it apart, cus it didnt look right, and my husband was so nice, and kept saying it looks good, don’t undo it.

And then as the countdown to when it needed to be finished, he\’d glance over every once in awhile, and smile and ask me if i thought i would be able to finish it. And i would say yes. But i felt so proud and happy that he seemed to like it too, and seemed so anxious, and then the minute it was finished he said well lay it out nice so i can take a picture of it for you…..wasnt that so sweet? And Elisa loved her sweater, and it looked beautiful on her. I am so proud.

Things like this are hard for me to do these days, and i’s hard for me to plan on doing something, and complete it, and so that is why i am so proud of it, because i have HD, i don’t have it bad yet, just early stages, but i am very proud of this. I am so happy. And i like to be able to give my grandaughter something new and pretty for Easter, because I think Easter is a time of new beginnings, it is a beautiful time.

I like this scripture verse:

Old things have passed away; behold, all things have become new. 2 Corinthians 5: 17


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yahoo 13

Ok everyone, spring is here! Finally! And so, it’s bootcamp time! Yes it is, why? Just because i care, about you and about me, and because i really need it too. And what better way to start our bootcamp than with my friend, retired Marine Colonel, Will Brown. Will is someone who i admire sooooo much, and he is a true inspiration to me. Reading Will’s story last summer, really inspired me to start walking every day, and it felt wonderful, but winters here really suck, so come winter i of course went into hybernation like any sane person would do lol. I wish i could run marathons like Will, maybe someday i will, i don’t know, i would like to maybe, but Will always compliments me, and says i’m doing well, even at just walking. He truly is an ecouraging and inspiring friend to me, and to so many others too. Here is a video of Will running in the Marine Corp Marathon:  http://www.youtube.com/watch?v=V0BLu6e9_Qk

Will is such an inspiration to me, because Will also has HD, but he is symptom free. He believes running is keeping his brain healthy, and i think that very well may be. Here is Will’s Story, you won’t want to miss reading this, this is Will’s story, as shown on the lighthouse website, you wont’t want to miss this. It is called:

Running from the Devil:


So i am hoping to get myself inspired again, and “out there” again, now that spring is finally here. The health benefits in exercise are undeniably a huge way to help with many illnesses, including HD, but many others also, and so’m putting this out there for all my friends. I’m going to post some more articles over the next little bit too on exercise and stuff, and aging and health. Yeah, i dont want to be over focused on exercise, but i am so underfocused, a little focusing wont hurt me at all lol lol.

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yahoo 14

These are my friend Gordon’s thoughts, as he wrote them for the HDAC, on what would have been Michael’s 19th birthday. Gordon, your story, and your writing, is sooooooo inspirational! I love hearing your stories about Michael, he always makes me smile 🙂 

The Robertson family: Gordon, Michael, and Kirsty

The Long Journey Home

written by: Gordon Robertson


Gordon, your stories about Michaels life make me smile soooooo much. I feel so special to know you. I think it is so awesome that you are writing about Michael, and sharing him with the world. I think you are doing awesome Gordon! Michael is an inspiration, and he will continue to be an inspiration through you Gordon. Way to go Gordon!

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yahoo 15

Michael loved the Rangers, and the Rangers loved him too. Here is michael holding his Rangers memorabilia, a soccer ball signed by all the Rangers. Way to go Michael! 🙂


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yahoo 17

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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yahoo 20
Honoring Michael

Last week, I wrote a bit about my HD journey, and how special friends have helped me along the way, people whose lives have also been touched in one way or another by HD. I wanted to begin to share a bit, how some of these friends have been such an inspiration to me, and helped me with my journey.

I wanted to start with my good friend Gordon. You see, the first time I met Gordon in the chat room, I was feeling sorry for myself, being newly diagnosed with HD, but I decided to say, tell me about yourself Gordon. He began to tell me about his son Michael, who has Juvenile HD, and my jaw just hung open in astonishment, as this kind man began to tell me about the misfortunes in his life, and how his family is so special to him.

Please read Gordon’s story, it is a very special story, one that will inspire you, one that will tell you no matter what is going wrong in life, to carry on. Gordons son Michael passed away today, at the age of 19, from Juvenile Huntington’s Disease, and he will be dearly missed by his family and friends.


Here is their story, as written by Gordon for the jhd families forum last July:


There are a few special people in this world, who truly, when life gives lemons, turns it into lemonade, and Gordon is one of those people. He is a huge advocate for JHD, always trying to raise awareness of the disease, and always always trying to help others in the HD community. And more than anything, always telling the world about his son Michael. If I was to say that Gordon is a true hero in the HD community, he would say, no, the true hero is my son Michael, and I have to agree with that.


On hearing the news of Michael’s passing today, there were many condolences, here are just a few of them:


Dusty said, “Alas, Michael’s battle is over. There is so much love and strength in your family, and you did a fantastic job providing love, discipline, hope, fun for Michael as he went the course of JHD, a horrible job for any parent or family.
I pray that you and your family will remember him without HD. Michael was fine young man whom we all loved here, and we will honour his memory with you. “

Marsha said, “Dusty’s right, Gordon, all of us will honour Michael’s memory along with you. I only knew Michael through you but he must have been a remarkable young man to inspire you to advocate on behalf of JHD patients everywhere and to provide support to others who are dealing with Huntington’s Disease in their lives. Michael was fortunate in his father and his sister. He left this world surrounded by love and I know he entered the next world the same way. You and Kirsty are in my prayers and I will be thinking about you. “

Eric said, “Michael had a full and rich life. He had loving friends. He had spirit. He had fight. He had the Rangers. He met his hero’s. His hero’s met him and he became their hero. Micheal had fun. He had school. He had beer and nights out with the boys. He had a fondness for the ladies and one in particular. He had inside jokes to laugh about and off color ones too. He had his own “pad”. He had the attention of people throughout Scotland and throughout the world. He had the best fortune of having Gordon and Kirsty and their love and caring. He had smiles, laughs, and a love of life. He gave us all fond remembrances and the inspiration of a life well lived.”

And these were my thoughts for Gordon, “Gordon, I didnt know Michael, but I did know him, I knew him through you. Many times, when I have chatted with you, and I have been feeling down, you would help me feel better. Not by talking about whatever had me down, but instead by telling me stories about Michael. Even though I didn’t know Michael, it was Michael that always cheered me up, and put a smile back on my face. It was like, you became Michaels voice, his advocate, he lived through you. He was a wonderful son, you are a wonderful father. And as a caregiver, your giving has been endless. But, never, never, never, as tired as you were, did Michael get spoken of with the utmost respect and dignity. You are a person who has taught me what true grace and humility is. I love hearing the stories about Michael, yes, he has won the heart of Scottland, and the whole world. He did his HD journey with a smile on his face, and I hope I can too, just like Michael. Lots of love to you and Kirsty. “


Gordon, I hope you and Kirsty can begin to share many smiles together, as you remember good times together. I know Michael is smiling too, he is free now.

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yahoo 24 

Some day I will make a quilt like this one. This morning in church, was just the best, because of all songs that we sang, this one I remember most:

O Holy Night
Oh holy night! The stars are brightly shining,
It is the night of the dear Savior\’s birth.
Long lay the world in sin and error pining,
Till He appear\’d and the soul felt its worth.
A thrill of hope the weary world rejoices,
For yonder breaks a new and glorious morn.
Fall on your knees! Oh, hear the angel voices!
Oh night divine, Oh night when Christ was born;
Oh night divine, Oh night Divine.
Led by the light of Faith serenely beaming,
With glowing hearts by His cradle we stand.
So led by light of a star sweetly gleaming,
Here come the wise men from Orient land.
The King of Kings lay thus in lowly manger;
In all our trials born to be our friend.
He knows our need, to our weakness is no stranger,
Behold your King! Before Him lowly bend!
Behold your King, Behold your King.
Truly He taught us to love one another;
His law is love and His gospel is peace.
Chains shall He break for the slave is our brother;
And in His name all oppression shall cease.
Sweet hymns of joy in grateful chorus raise we,
Let all within us praise His holy name.
Christ is the Lord! O praise His Name forever,
His power and glory evermore proclaim.
His power and glory evermore proclaim.

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