Happy Birthday Mom!!!

 Happy Birthday in Heaven Mom!

Living and Healthy & Fit Life

Shared by my youngest sister, Ann: 

Started 21 day fix extreme today. Just got my heart rate back down from doing the PYLO Fit extreme workout for the day. I think I'm going to die. But I'm going to see this thing through. "Why?" you might ask. Here's why. I was born into a family with a mother who has Huntington's Disease (HD). For those of you that don't know what HD is it's like taking Alzheimer's and Parkinson's on steroids then a mixing it all together. It is 100% fatal. As for now, there is no cure. I grew up my whole life never knowing my real mother but taking care of her instead. Two years ago we buried her at the tender age of 58. Last August, I mustered up the courage to be tested for HD. I had a 50/50 chance of having it. The Monday before last Thanksgiving I was given the blessed news that I did not inherit the HD gene. It is a miracle and gift I will never take lightly. NONE of my children will grow up having to wonder if they have the walking time bomb. They won't have to watch their mother deteriorate due to HD like I did. I will be able to hold my grandchildren. By living a healthy and fit life I am going to do all those thing my mother would have liked to but was robbed. I have spent the last decade letting my body go to pot but no more excuses. Here's to you Mama. I love and miss you.

Last night I co-hosted a webinar for the A-T community about protandim with Dr. Joe Giacalone. Along with the several questions that I had afterwards, I also had a request to update my blog. I was very inspired by this request because I really didn't know anybody really cared or was watching for updates. I am going to try to get back to posting at least a few times a week. I have had a very rough few months and had just kind of shut the world out and hibernated into my own little world.

First of all, I have to admit that co-hosting last nights blog was very HARD for me and I was very SCARED.  I do not enjoy public speaking or being the center of attention. In fact, I was even nervous at my own bridal shower because like I said I just don't love being the focus of attention. Even though I have had a rough couple of months and have wanted to just stay in my own little world, when Dr. Giacalone joined our team and offered to do educational classes for me I knew that I had to get some educational information out to my A-T friends. As I read your stories and struggles my heart just aches for each of you and the struggles that you and your children are going through and I have to ask myself how I can just sit back and watch you and your children suffer when I believe that I have come across a product and science that has been life changing for our A-T children??? Yes, this takes a lot of effort for me to get this information out there, but if I can just improve the quality of one of your children's lives my sacrifice will have been worth it.

As you may recall from my blog, last year my mom had been dying from Huntington's disease. The care center where my mom was staying quit giving her the protandim, that she was doing so well on, and lied to us about it. She plummetted and went down hill quickly. We didn't catch what was going on for about 3 mos. and by that time she had reverted back to being a vegetable, had quit eating, and was down to less than 100 lbs. in weight. As siblings, we made the decision to put her on comfort care and let her go. She passed away August 13th of last year. We spent 11 days gathered around her hospital bed, in my sister's house, keeping her comfortable in her last days. Her death has been very difficult for me to cope with, but it has also been a great blessing as she know longer has to deal with an imperfect body.

In the fall we moved to a house out in the country on five acres--FINALLY! Even thought it is what we have wanted for quite some time, there have been a lot of changes to deal with and I still don't have my office put together!!

At the beginning of November I got very unexpected and unwanted news. We found out that we are expecting another baby again in July, even though the copper IUD that I had put in was still perfectly in place. We were the 1% that is on the statistical chart at the doctors office. We just seem to have a knack for beating the odds! The doctors only comment was that this must have meant to have been. I have cried a lot since I received this news, I have been so exhausted, and I have not felt well. I'm sure that some of this is enhanced because I am not getting any younger at age 39. I know with time that I will learn to love this baby and it will be a blessing in our home. My two year old, Rachel, was also a surprise and she has been an absolute joy and pleasure to have.

As far as my twins condition, they are still doing very well and we are very committed to giving them their protandim on a consistent basis. They are nine now and in the 3rd grade and they are still both very tiny for their age. Ben's speech continues to be hard to understand, he struggles with fine motor skills, he still drools some, and he has somewhat of a wobbly walk. Other than those things, Ben lives a relatively normal and healthy life and he is still riding his bike! Bekah also continues to do well. She does still struggle a little bit with fine motor skills and has some trouble writing, but she continues to be healthy and strong!!!

Interview with Trent Lindstrom

Here is an 11-minute clip of an interview that I did with Trent Lindstrom on 21 Jan 2012.   This is a good summary of my family's struggles with Huntington's Disease and Ataxia Telangiectasia and how Protandim has given us hope. 

For more information about Protandim and LifeVantage, visit: www.mylifevantage.com/jillshope

Mom Eats By Herself

My sister reported today that she took Mom to a doctor's appointment. After bringing her back to the care center, she stayed to feed Mom lunch. She reported that she went to feed her and mom grabbed the fork out of her hand and insisted on feeding herself.  This is the first time we have seen our mom feed herself in a very long time.

One of the aides commented that she is started to do all kinds of things that she was not doing before such as going into the bathroom by herself to use the bathroom (she was not successful, however, because she only has the use of her right hand right now) AND she unbuckled her own seat belt on her wheelchair, stood up and walked out of the dining room because she was tired of waiting for the aide to get back.

These are pretty amazing feats for someone who has been diagnosed with stage IV Huntington's disease!

"So Beautiful"--Mom's First Words

Today I got a surprise phone call from my sister who had traveled over 500 miles to see my mom on the spur of the moment.  She had been hearing from my other sister how well my mom was doing since we started her on 1 Protandim in the morning and 1 Protandim at night about 2 months ago and she wanted to see it for herself.

My mom had been diagnosed with stage IV Huntington's disease well over a year ago and was not expected to make it much longer.  Her own mother died around the age of 55 from Huntington's Disease related symptoms and my mom is now 58. She has also not spoken or walked in well over a year.

My sister called me because she was so excited! Because when she got there, my mom got up and was dancing with her and then she insisted on going outside for a walk. When she got outside, Cindy reported that she said, "So beautiful!" These were the first words that my sister had heard her speak in well over a year and she was so excited.

These are very exciting reports to hear about my mother, who searched her whole life for answers to her many health problems, but especially Huntington's disease.  She always believed that she would find answers in her life time and it is such a miracle to watch all of this happen.

It is also a very exciting and emotional time for us as siblings as our whole lives we have always had the horrible death sentence of Huntington's hanging over our heads. And, for the very first time ever we have REAL HOPE! This feels my heart with so much joy that it is hard to put into words.

Janice & Ann's Visit With Mom

Janice and Ann visited mom today and dyed her hair. They reported that mom was very alert after only two days of being on Protandim, and that she was interacting with them in ways that she had not been able to do in a long time. She appeared to follow the conversation with her eyes and was laughing. She also opened her right hand and scratched her nose, something we noticed she had quit doing around her birthday in July of 2011.

Mom Starts Protandim

We started mom on Protandim today.  Because she is so advanced with Huntington's Disease, we started her off on a double dose. We are giving her one pill in the morning and one pill at night.

Letter to My Siblings About Mom

The following is a letter that I wrote to my four siblings:

The last few nights I have had great difficulty sleeping, largely due to the fact that my thoughts keep turning to Mom.  I really feel that she doesn't have much time left in this life. For her sake I will be so happy for her to be relieved from the mortal suffering that she has endured for so many years. I don't know what these feelings and thoughts I am having mean, but I felt that I should share them so that each of you will be prepared when the time comes.

I keep having several thoughts run through my head--Where will we bury her?  We have talked about Kanosh. Is this feasible? How do we go about making these arrangements? Where will we hold the funeral?  Who will we invite to the funeral? Who will speak at the funeral? How will we pay for all of this? What kind of traditions do we want to start to honor her life? etc, etc...  I really think that these are things that we need to be talking about and planning.

I have had the great privilege and honor of going through the remaining pictures, geneology, and paperwork of her life that I took home with me the last time that we were all together. I feel like I have hit a gold mine as I go through this information. For the first time in my life, I feel like I am starting to make sense of all of the confusion and hurt and anger that are associated with Mom. It is so healing for me to read her words during her healthy years before mental illness robbed her of her life and us of our childhood. I thank God that she took the time to keep a record of her life so that we could know these things.

She was such an amazing woman who loved us, the Lord, and her fellowman. She spent the best years of her life (and of ours) taking care of us: cooking for us, sewing for us, washing and ironing our laundry, gardening, canning, and nurturing us in so many ways (including taking us to regularly have our hair done and her hair done). She also took the opportunity to better herself by taking college courses and she even learned to make cheese. She served her family also by faithfully working on her geneology which is evidenced by all of the records that she has compiled. She faithfully fulfilled her calling as a visiting teacher, as a teacher in the Primary, and even as a member missionary. There is a part where she talks about making a dress for a lady in her ward so that she would come to church. That kind of charity is really the heart of our mother. 


I'm sure that these things did not come naturally or easily for a woman who spent her first few years of life living in a boxcar in the remote town of Carlin, Nevada and a large portion of her life being bounced around from foster home to foster home, many of which were extremely verbally abusive. One very interesting thing that I learned is that she used to keep the books for the cleaning business that she and Dad owned in their early years together (boy does that sound familiar). My plan is to compile all of her journals, put them in order, and make copies for everyone. I will do something similar with her pictures. I will have these done as soon as time and money allow.

Some people look forward to their parent passing for the big inheritance that they will receive. I feel that I have been given something greater than the riches of this world by having my mother's records so that I could see just a glimpse of who my mother really was. I am so grateful for her life, for her good example, and the foundation in life that she laid for each of us. I hope that each of us can honor her life by building on the good foundation that she set for us.

I love each of you so very much. I have been put in kind of a weird role in life. As the oldest sibling of a family that does not have a mentally-present mother, I have often felt responsible for each of you. I think about and pray for each of you often. Sometimes I don't know what else to do as I watch each of you with your different struggles--sometimes I don't know what else to do for my own struggles.

I would love to hear each of your thoughts, feelings, and ideas about Mom or just about whatever. We have stood together for so many years and I pray that we will continue to stick together as we continue to go though life.

A Sister That Loves You Very Much,

Jill

Letter to Mom from Ann

 November 25, 2010

My Dearest Mother,

    A great void is in my heart today knowing that you will not be able

to join our family for Thanksgiving this year. I wanted to make it

special for you anyway so I decided that we could bring Thanksgiving

to you instead. I asked all of my siblings to join me in doing so and

they have all sent me letters of thanksgiving in your honor. Here is

my letter of gratitude.

    Thank you first of all for giving me life. I wouldn’t be here if it

weren’t for you. I wouldn’t know what it is to be a mother myself or

the joys motherhood brings.  You have been so supportive in helping me

with my own children and helping wherever you are able. Your kindness

will not be forgotten.

    Thinking back, I remember how important is was to you to have our

pictures done and how you liked curling my unruly hair. There isn’t a

time when I’m curling my own daughters’ hair that I don’t think of

those times. There are so many times that I wish I had taken a picture

of this or that moment  and I now know why you were so adamant about

taking the time do so. Thank you for teaching me through your example

to capture these moments before they are gone.

    Another memory that keeps coming to my mind is a Christmas at your

old trailer in Reno. I think I was about 7. You had made me a dress

that was very pretty and you had my hair all curled up. You have a

picture of me in your album of the day I’m thinking of.  I came and

sat on your lap and snuggled into you and I remember how safe I felt

in your arms how much you loved me. I even think I was sucking my

thumb, I was so comfy. Thank you for loving me so tenderly and giving

me your time.

    There are so many more memories and thank yous that I could write

about. Unfortunately, I lack the time to do so. But I have one more

that I will mention. I have watched you these last few years struggle

with your physical as well as your mental limitations and have wished

so many times that I could take it for you to offer some relief. There

are times I’m so frustrated that I didn’t have more time to build a

better relationship and get to know my uninhibited mother better.

However, there is a happy and unexpected outcome to all of these

struggles that I want to thank you for. Through loving you and serving

you, I have come to love you as your Savior does. Unconditionally,

without reservation. Mother, thank you for giving me the opportunity

to come to know this love. There is absolutely no doubt in my mind He

has a special place prepared for you and I look forward to the day

when we all will be together again in our perfect forms with eternity

to build the family ties we were meant to have. May the Lord comfort

you through these trying times and walk by your side until He calls

you home to His restful peace. I love you, Mother more than words can

justify. Happy Thanksgiving!

Forever your baby,

Ann

Visit With Grandma Vesely (My Mom)

Spencer, Bekah, Enoch, Mom, Ben, & Dallin

Mom Moving To Provo/Contemplating Move to Malad

I just found out yesterday that Ann is moving my mom to Provo next month and that is very stressful to me. One thing that have have noticed lately is that I have been turning to food way too often to help with stress and depression.

Larry and I have been looking at investment properties to increase our income.  Three of them have fallen through for us now and we are starting to wonder if the Lords is trying to tell us something.  We both feel strongly that we need to do something different, but what?????

Yesterday, the thought of moving to Malad entertained our thoughts once again.  In some ways it makes so much sense--we could have free land to build on, we could sell both of our houses and build one and be completely out of debt, we could be there to help run the farm while Larry parent's went on their mission, and this is the year that the present high school auto shop teacher will be retiring and Larry would be perfect for the job.

I am just sick inside about the thought of leaving Spanish Fork and moving again.  I have really learned to love it here and we have made so many good friends.  Just the thought of starting over again makes me want to throw up.  I feel very torn.   I have also thoroughly enjoyed my friendship with Erika and her family and I would be very sad to leave that, but I also know that we have family in Malad that I would enjoy being around.

Larry reminded me last night that we need to make sure that our lamps are full as we make these very difficult decisions.  I feel very compelled to pray and read the words of the prophets as I know that these are decisions that we need inspiration to make.

Letter from Mom

I received a letter from my mom yesterday that was very upsetting to me.  I sent her a Christmas letter so I assume that is why she sent it.  Amazingly, she mailed it to the right address and she spelled everyone's name right except for Dallin (Dallon).  She sent us some recipes and Born Again Christian stuff.  There was no note or anything.  Receiving that letter was just a painful reminder of her mental illness.  It is a reminder to me that I still have a 50/50 chance of inheriting the same gene for HD [Huntington' Disease].  It's not something I like spending a lot of time thinking about, but it's hard not to be reminded of it sometimes.  I don't know if I'll be able to deal with my relationship with my mother in this life.  It may just be something that will have to get worked out in the next.