March 24/07 Remembering John

 

 

Heaven is a better place today, and here on earth it’s a sadder place, because our good friend John is no longer here. John and Linda were inseparable, always always always giving, smiling, and serving others. John and Linda, always in the kitchen, together, cooking up a storm for church lunches…..always giving hugs….always ready to pray….travelling, to Africa and Mexico to help poverty stricken children….standing in the cold snow here in Canada ringing those kettle bells at Christmas time. They raised a beautiful family together too, and were just starting to enjoy the empty nest. John passed away from liver disease today, and his family, friends, and even strangers, will be missing out on one of God’s kindest and warmhearted person i have ever had the privilege to know. John was special, he loved God, he loved his family, he loved his friends, and he loved strangers too. They say heaven is a beautiful place, but i think that today, heaven is even more beautiful, because John is there. And here on earth, is beautiful too, because John has been here. John will be missed very much by his wife and family. John was very very special.

There is a special song called Friend of God. I want to dedicate this song to John, because John was a friend of God, and i know he would like this song so much.

Bless the Lord, O my soul: and all that is within me, bless His holy name.

Psalm 103:1

March 20/07 It\’s Bootcamp Time! With Will Brown

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:

http://www.hdlighthouse.org/commlinks/people/updates/1239wbrown.php

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.

March 16/07 The Long Journey Home

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

http://www.hdac.org/features/article.php?p_articleNumber=375

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!

Michael loved the Rangers

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!

 

Feb 14/07 Our Little Valentine – Elisa’s 4 today

Our Little Valentine

Well, our little Valentine is four years old today. It’s so hard to believe, we just love her to pieces. Our first grandchild was stillborn, and we were very uncertain of this little baby’s future too. But, she made it, and was born on a very special day, on Valentines Day. It just feels so special, and such a priviledge, just to be a part of her life. We love her so much. We are so proud of our daughter, she’s doing an awesome job parenting Elisa.

I love my daughters

We love both our daughters very much. Sometimes I wonder if I tell them that enough, I love them and am so very proud of them. They are two beautiful young women, very caring, kind, and loyal. I love you both very very much.

My first Valentines Day with Dan

I remember our first Valentines Day, I was 16, Dan was 17. Dan brought me two boxes of chocolates that first Valentines Day. At first I though, what, one wasn’t enough to tell me that he loved me, or was it because one was a square plain box, and the other one was a heart shaped box. Maybe he really didnt know what kind to get me, so he got me both. Well, sometime later, I found out why I really got two boxes of chocolates. He had gone to the store and bought me a heart shaped box of chocolates. Then later that day his Mom asked him if he had bought me any chocolates, so, being emberrassed, he said, uhm, no I haven’t. So then his Mom gives him the square box of chocolates, and says well here, you have to give your girlfriend chocolates on Valentines Day lol

I’m thankful

I am very fortunate. I don\’t think everyone finds love in their lifetime. I have been very fortunate to have been loved, and to love. I’ve had the love of my husband, I have had two daughters to love, and now a grandaughter. I’ve been fortunate to have very good friends to love, and be loved. More than anything, I have found something that not everyone finds in their lifetime, I have been fortunate, very fortunate, to find that God loves me, and that I can love Him too. I don’t think there is anything else I could ask for in life.

Everyone is special

I hope everyone, everywhere, knows, that someone loves them. Somebody loves you. There is a special plan and a purpose for your life. There is nobody else like you. You are special, so very special, yes you, you’re very special.

Feb 04/07 Friends – A caregivers heart

My friend Eric is caregiver to his wife Teressa, 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.”

Hope:

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!

Jan 27/07 I’m Stepping Out Tonight

Ok, so, I’m stepping out tonight, out of the closet, only momentarily lol. Anyways, here is a posting I did on the HDAC forum tonight, and I thought, hmmm, I will post it here too, because it is a good thing…….smile……so here it is:“Well here goes. I’m very uneasy talking about my meds on the forum, even though i talk about them in the chat. But i think i will this time. I have been on a memantine trial for 3 months now, and am doing really well on it. I don’t feel as confused and slow, feel more alert. I noticed the dif immediately. I’ve been told to stay at 10mg because 20mg has shown to have more side effects. I made my grandaughter a quilt this Christmas. I have not been able to sew for three years. One of my daughters told me last week, that she sees quite an improvement in me lately. And we ran into some friends today, that we have not seen for six months, and they were like, Barb, you look fantastic, what’s going on they said. They said you are not slow and confused looking, and you are responding quickly in the conversation. So, i have not had every area improve, i personally feel i have had maybe a 75% improvement. I feel this improvement is not in every area, but in three or four select areas. And so, i am happy about this, this is a good thing. If i get more improvement, great, and if not, the improvement i have already had i am very happy with. Does my husband notice an improvement, no. That’s only cus he doesn’t notice anything lol. I’m thankful to Marsha for telling me about memantine. It actually stops brain cells from dying. My Dr says current research is showing it will give me an extra 5 to 10 years he feels for sure” Grandma…….le’s have a conversation   Grandma…….let’s have a conversation…….OK sweetheart, what would you like to talk about?…….Well Grandma, when I am a grown up, I am going to have my own home. It will be very beautiful Grandma. And I will have pretty pictures on my walls, and I will have twins Grandma, and they will be twin girls, and I will have lovely hardwood floors, and Mommy will come and visit me in my pretty home, when I am a grown up…….That sounds wonderful sweetheart…….Yes Grandma, I am going to be four years old soon Grandma, I am growing up very fast…….Yes you are sweetheart…….Grandma?…….Yes sweetheart…….Jesus loves us, and Jesus just loves everyone Grandma, that’s because Jesus is in our hearts Grandma …….You have a lovely heart Grandma…….Well thank you sweetheart, you have a lovely heart too…….Well of course Grandma, that’s because Jesus loves us Grandma, and I am almost a grown up. I’m almost four years old Grandma…….Grandma?…….Yes sweetheart…….When I am a grown up, will you come and visit me in my lovely home Grandma, and come and have a tea party with me Grandma?…….Well of course sweetheart x o x o x                                Praise God from whom all blessings flow;                               Praise him, all creatures here below;                                            Praise him above, ye heavenly host:                                            Praise Father, Son, and Holy Ghost.

Jan 19/07 Sad

I’m so very sad this week. So many people passing this week, and all at once, and it’s just hard.

It’s so many, all at once, all at the same time, and it’s just very very shocking, and i’m just being honest that this is so very hard to take in all at once, and it’s frightening. It hits very close to home, and i’m sure i’m prob not the only person feeling this way. So good to have all of you for my friends. I guess hd is terminal, i guess, guess we’re being hit with it hard this week, i guess, does someone up there think we need a reality check on all this? I dont think so, but sure seems like it, i dont know. I guess stuff just happens, nothing can do about it, but would be nice if there was a cure. It’s ok to feel sad, it’s a part of life, and it’s ok.

I will remember three special people…….they are free now, and that is good, and I will remember them with a smile.

“Every good gift and every perfect gift is from above”

 

 

 

 

Jan 12/07 Special Friends – Honoring Michael

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.

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

http://www.jhdfamilies.co.uk/forum/_disc/00000020.htm

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.

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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. “

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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.

Jan 06/07 New Mercies

From Lamentations 3:23
Great is thy faithfulness! Great is thy faithfulness!
Morning by morning new mercies I see;
All I have needed thy hand hath provided
Great is thy faithfulness, Lord, unto me.

I tested positive for Huntington’s Disease in Jan of 2004. One of the things I have found the hardest to deal with, is the changes in my personality. I used to always have a song in my head, but that is one area of my personality that has just kind of disappeared, and when I do find myself singing, it is a very rare event now, and catches my be surprise…..so you can imagine my surprise today, when out of the blue, I found myself singing, and I slowly realized I was singing one of my favourite hymns, Great is Thy Faithfulness. And I realized, yes, what a beautiful beautiful song.

My old world…..I loved my life, and loved who I was. I always imagined that no matter what tragedy came my way in life, so long as I stayed strong in my faith, I would survive. But what happens when your memory fails you, even your memory of who God is? My mind was no longer my strength, but my weakness. I no longer had the same passions, church was no longer a joy, but a struggle, I could not focus and even remember sermons……keeping up friendships started becoming really difficult, as I found my old world disappearing, and finding myself in a whole new world. I was grieving a loss, the loss of me, my hopes, my dreams, and my personality. But, I finally began to realize, that even if my memory fails me, that God’s memory will not fail Him, and that I can trust Him to remember how much I love Him, even if I forget. I no longer had to fight to be strong, but could accept this new me.

I have been told that I have been very courageous in this past year, and that I have met some tough challenges. I’ve also been told that I probably will not believe that I have been courageous, and that is very true lol. But if my friends say so, then I believe it.

What I do know is I am no longer scared and angry, but finally in a place of acceptance of HD in my life, and this brings me great peace. I want to give thanks for special friends in my life, who have helped me this past year. Some have shown me what real grace is in the face of tragedy, others have helped me not to be scared of this new world I’m in, and others have offered true inspiration. I hope to introduce some of these people to you over the next while, because, well, just because…..