Finding Joy and Hope

Kate

LOVING THESE DAYS

So busy these days... Some times I forget to slow down!!
Kate and Baby are doing very good!
She is on meds for her chorea.. which seems to me helping but she says it makes her shake like leaf. But she is willing to take it till we talk to dr again. Kate and her Little brothers are closer than ever.. males me giggle..

Gabe feels "Vavaeh"

Smiles

New days ahead

 We have been so busy, times seems to just slip away.. I could just stay in these days forever.. but at the same time We are so very excited for Kate to meet her baby girl in person.. to see Kate's face and to watch her heart grow the moment she is born!!

Kate asked me to be in the room with her as she delivers... this is an amazing honor and I am so happy to do for her. She also warned me that I can not fight with her boyfriend or she was kicking us both out.. :) I love her!!  I am not sure what I most excited about to meet my granddaughter or to see Kate's face when she meets her daughter.. I pray that Kate's daughter has her sense of humor and her giggle..
Kate had some scary days ..with high blood pressure and with baby not moving.. yet God has kept both Kate and Baby safe. Thank you God!!

SOMETIMES THINGS WORK, SOMETIMES THEY DON'T~

I have something to voice.. and I pray that God Leads me.. that the words that I type may not offend anyone..as that is not my intention..

I joined Facebook about 5 years ago??. Our lives have changes so much in those 5 years. I have met so many wonderful people and be able to reconnect with past friends! 

I joined on line support groups for JHD and HD.. and I have watch as people have worked very hard and put so much time a effort in to raising awareness for Huntington's .. I have been amazed and humbled at peoples ability to find ways to fight against a disease that at this time has no treatment.. 

This is a blessing for me..

I can't express how much I need to read blogs and talk to others who know what we are going Thur.. 

I am saddened to see so much discord and anger and pain in these support groups.. as we are all fighting the for the same thing.. I know that everyone has their own opinions and and reasons.. this is not to disregard any ones thoughts feelings or beliefs..

I can't understand why all the angry words.. and I understand why we are so protective of our work in raising awareness and our loved ones with HD and JHD .. My voice is asking 3 things

1. why fight? can we just talk and work out a comprise..

2. divided we fall..TOGETHER WE OVERCOME ALL

3. love one another..do unto others as you would have them do to you

I may not understand everything that is happening, but I know that when someone talks to me about JHD or HD and I give them 3 web sites to visit and they tell me "wow i never knew".... to me that is what being an ADVOCATE is all about.

Now I give credit where credit is due and I feel hope and love from all my HD and JHD family..

I ask for all of us to come and pray and look to each other to build up and not tear down.. Please...

and if there is an issue that there is no peace to than I beg of you to let it go.. for if you hold on to it.. it will consume and there will be no peace for u... Anger breeds hate and hate will hold you back!!

I know this as I struggle with feelings of anger and Hate ..

I not asking you to say nothing if something is bothering  u.. I am asking that we do it with a goal of working together.. when we come at each other with hatred in our voices and hearts... nothing is helped and we are left feeling empty and with more anger that we had to start with..I only am making my feelings and thoughts known, we have lost so many to this disease...

I pray that we can come together and find a way to work together and show the world just how strong we are!!

I do not mean to trivialize anyone's thoughts or feelings!! You all are my HEROES!! 

God bless you all!!

I leave you with words from Jesus- these words have helped me and given me much peace when my mind and heart are in turmoil...  

   ²⁷ “But I say to you who hear, ^(AD)love your enemies, do good to those who hate you, ²⁸ bless those who curse you, ^(AE)pray for those who ^[o]mistreat you. ^{29 (AF)}Whoever hits you on the cheek, offer him the other also; and whoever takes away your ^[p]coat, do not withhold your ^[q]shirt from him either. ³⁰ Give to everyone who asks of you, and whoever takes away what is yours, do not demand it back. ^{31 [r](AG)}Treat others the same way you want ^[s]them to treat you. ^{32 (AH)}If you love those who love you, what credit is that to you? For even sinners love those who love them. ³³ If you do good to those who do good to you, what credit is that to you? For even sinners do the same. ^{34 (AI)}If you lend to those from whom you expect to receive, what credit is that to you? Even sinners lend to sinners in order to receive back the same amount. ³⁵ But ^(AJ)love your enemies, and do good, and lend, ^[t]expecting nothing in return; and your reward will be great, and you will be ^(AK)sons of ^(AL)the Most High; for He Himself is kind to ungrateful and evil men. ^{36 [u]}Be merciful, just as your Father is merciful.

   ³⁷ “^(AM)Do not judge, and you will not be judged; and do not condemn, and you will not be condemned; ^[v](AN)pardon, and you will be pardoned. ³⁸ Give, and it will be given to you. They will ^[w]pour ^(AO)into your lap a ^(AP)good measure—pressed down, shaken together, and running over. For by your standard of measure it will be measured to you in return.”

 Luke6:27-38

what a week...

I have been so busy this past week.. Work, Doctor appointments and travel for work and of course mommy jobs and church, and Huntington's meeting. 
Travel to Morton Mn and attended the MN PET BREEDER ANNUAL CONFERENCE...there they auction off 3 of Landon's bracelets and we raised a total of 659.00 for our HD chapter.. AMAZING.. totally scarey to stand in front of 50 to 75 people and tell  them about Huntington's and ask for help..the prayers and well wishes were amazing.. so many asked what is HD and where can they find out more about it.... 
 http://www.wehaveaface.org/feature
JHDKIDS.COM
 I told them and even showed some of the people on my phone... I am trying to find a way to fight back against this stupid disease. I will until my last breath.. not just for Kate and her Child but of all these people who have lost loved ones and who are fighting and those at risk...

       I needed to attend the HD meeting as I am struggling with feelings of grief an anger and happiness.. It is very strange to me to go thur all of these emotions almost on a daily biases.. I can talk to my support group family knows these emotions.. The issues I have toward Kate's baby's daddy are a totally separate issue.. I am working toward what is best for Kate and Her baby.. not what I want or feel.. this a hard because sometimes the two issues are not the same... and many times it is in the eye of the beholder as far as what is best for Kate and her child..Meaning that I may feel one way and she may feel another..
 I know this, I pray for Our Lord to Guide me and give me the wisdom and strength to be good to my little girl and her daughter.. I don't always say the right thing or express myself to Kate, but we are working toward what is best for Kate and Baby girl, and with God leading us we will get there...I can only pray that this is enough.


At our HD Meeting we were able to ask questions to a panel of lawyers fro MN,Iowa and South Dakota, about estate planning and guardianship and conservatorship and the like.. it was very helpful and yet very scarey.. 




Next...
Kate is 28 weeks along baby is weighing 2lbs and 6oz... and looks perfect.. Landon was there to see the ultrasound this time and enjoyed seeing the baby...


  ¹⁷Every good gift and every perfect gift is from above, and cometh down from the Father of lights, with whom is no variableness, neither shadow of turning.
   ¹⁸Of his own will begat he us with the word of truth, that we should be a kind of first fruits of his creatures.
   ¹⁹Wherefore, my beloved brethren, let every man be swift to hear, slow to speak, slow to wrath: James 1:17-19


Her belly is showing more and more... the baby movements are getting stronger and stronger. It has been so amazing to be a spectator in this event..It has not always been easy for me to watch Kate worry, or watch her tears..But her smile when she touches her growing womb and her voice softens when she speaks about her hope for her child is a blessing. 
She is so excited to meet her child and hold her in her arms.. We are excited for her!

The difficult decisions
We have a hard time working out some choices with Kate. We have to take in what she feels and her thoughts.. She is still our Kate and a precious gift from Our Lord.. for us to disregard her thoughts because she has JHD, would be a disservice to her and to her life. We do make some choices that she might not agree with but we always want her to feel loved and respected. We have had advice given to us that we should not do this..But as a parent and a caregiver I can't do this without feeling I have failed her and my duty and responsible to her. 
I know that there are days that I feel that it would be easier for me to just do what I want.. I choose to not do this as I know in my heart that no matter what JHD does to Kate, She still has thoughts and feelings that need to be acknowledged and expressed, and my feelings come in 2nd and I have to base choices and decisions what is best for her and NOT my feelings .. 
There are times that Mike and I sit and talk and wonder what parts of her behaviors are from JHD and what is not..But we stand together..and I can say this with out Mike, I not sure I could do this.. He is rock..He keeps me sane.. (if that's possible :) haa haa .. yes I have a sense of humor about all of this for with out humor.. We might not be able to function at all.. We are a family and we are surviving and we will put our trials and our blessings in Gods hands.. for with his guidance we will be ok. 
SO we offer our praise to God and may all we do be for his Glory.. For with out him we would be lost...






 

Never Let Me Go...

I watch my children grow.. I watch my grown children change.. I wonder to my self what I could have done different. I can not claim that they are success only because of what I have done for them or with them. They are gift that God has lent to me and oh so many time I have failed them.. I try and pray that I do the best I can.

Shawn's face as he hears the song "Never Let Go"

 

than he says I love this song it God Song..

I thank God for them.. all of them.. I see their smiles and makes the day a good place. I hear Shawn sing "Our Lord never lets me go, Oh No never let me go" It is what he needs to face each day.. to know to never" Let go of Our Lord"..

Even though I walk through the valley
Of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle                                                          
Of the storms of this life
I won’t turn back, I know You are near
And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
And I can see a light that is coming
For the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth
And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
You keep on loving
And You never let go
Singing
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
Yes, I can see a light that is coming
For the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You
I can see the light
Yes, I can see a light that is coming
For the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
So strong
So wise
So loving Lord
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
Oh, Lord, You never let go of me

because in Our Lord We find peace.. strength...

DO i have fear?? yes.. I also have Hope .. and when I fail I look to God and Know he is with me.. thru ever High and EVERY LOW...

I can't say that I never cry or scream, or ask Why?? why Shawn, why Kate , why is Mikey struggling?, why is Landon hurting, why have I failed, It is what God shows me and leads me thru it.. He never lets go.. when I am strong he is stronger, when I am weak he is stronger...

 

Kate's battle with JHD is not easy to watch, an even harder for her to deal with.... She is pushed and pulled in so many ways. She sees life in way I don't, and at times I don't understand. It doesn't mean it is wrong just different. It is working to find a middle line.. The struggle with it is finding where she is at. and truly hearing what she needs from us. To make choices that are hard and the ones that we need to find a middle ground..

I don't think there is a right or a wrong way...no hard and fast lines ...so we work with what we have. I ask questions and hope the choices I help her make are for her good..and I pray that God "never lets us go"

love your enemies, bless those who curse you, do good to those who hate you,

^{Matthew 5 43-48
43} “You have heard that it was said, ‘You shall love your neighbor^[g] and hate your enemy.’ ⁴⁴ But I say to you, love your enemies, bless those who curse you, do good to those who hate you, and pray for those who spitefully use you and persecute you,^{[h] 45} that you may be sons of your Father in heaven; for He makes His sun rise on the evil and on the good, and sends rain on the just and on the unjust. ⁴⁶ For if you love those who love you, what reward have you? Do not even the tax collectors do the same? ⁴⁷ And if you greet your brethren^[i] only, what do you do more than others? Do not even the tax collectors^[j] do so? ⁴⁸ Therefore you shall be perfect, just as your Father in heaven is perfect. Matthew 5,43-48

Love my enemy, that is a struggle.. it is easy to show love to those who are kind and loving toward my family and myself.. it is easy say I pray for ______. It is not easy to truly pray for those who have hurt us.. and not a prayer for them to change.. but for us to find love for them... I find myself coming back to this bible verse over and over.. I find myself failing.. and very likely to keep failing.. Is is a frustrating place to be, to be filled with anger and all the other feeling that go with that.. I pray that we can find some peace ... It is a struggle. to Love my enemy.. or someone or something I perceive as my enemy.. I find myself wishing bad things would happen or that it would go away.. and I find my self back at Matthew 5, Even than Our Lord tell me what to do..
²⁹ If your right eye causes you to sin, pluck it out and cast it from you; for it is more profitable for you that one of your members perish, than for your whole body to be cast into hell. ³⁰ And if your right hand causes you to sin, cut it off and cast it from you; for it is more profitable for you that one of your members perish, than for your whole body to be cast into hell.

I pray that God stays with me and that my EPIC FAILS he will forgive.. I know there is forgiveness in him. I can't pick my brain and throw it away in the literal word.. but I can stop feelings of anger, guilt and hatred when they come.. and when they do come I pray God uses them for his GLORY.. 
  
Christ went thru more suffering and pain and death than i ever will.. it make a person feel very weak when I see what He has done and what he has given me. Perhaps, this is a time that i have to go thru to heal??
I am not sure, but i know that the fact is that, Our Lord is my guide in forest of my life.. and as long as i have him and keep in in front of me i will make it thru. 
It is not easy, as often i think. "i can do better.".(NO i can't and every time I try with out him, .. well let's just say EPIC FAIL... EVERY TIME... It is scarey to think of all those fails.. they haunt me.. and than I look in front of me and see his trail leading me..and I keep walking.. I keep praying..

SO this Easter I ask for forgiveness for those who I feel anger toward, not for myself to feel better but so that they may feel our Lords love. My God heal and show them the Love he has for those who are hurting
I also pray for forgiveness for all I have done and said to hurt people and for those times when I have shut my mouth when I should have spoken up, for those times I should have shut up and didn't. For those times that I feel I am right and no can talk to me because I am to stubborn.  Our God forgive me.


This is a Hard prayer to pray and truly mean it with my heart and soul..because I am dirty from sin and to ask for His forgiveness is hard..
      

Somedays I have trouble seeing the light

I tried to write yesterday, but it was to fresh.. my feelings and thoughts were quite jumbled..
So I am going to try today,, I guess I should explain why I feel this way??

Kate and Shawn.. birthday loves!!

Some days dealing with a child is hard.. and dealing with a child that has a disease that impacts their brain is at times so wonderful and other times so very stressful
I have two.. Katelyn and Shawn.. and I would not trade them for ANYTHING in the world. I, like any mother get overwhelmed, scared, angry, and sad-- I also Laugh more,give thanks for the little moments, and most of hold all my kids close to my heart.
So when I the bad days come, it seems to hurt more.. I am blessed to have all my children, Katelyn, Mikey, Landon, Shawn,and Gabe.. I would not change one thing about them.. They bring me great joy and love..
Days like yesterday hit me hard and it take a bit for me to find my feet again..
Yesterday Kate was upset with me.. and I can't say I blame her. I can understand her frustration with being 20 years old and having mom and dad living with her and having a boyfriend mom and dad don't approve of. It is stressful for her. I have tried to be honest with her and tell her where we are at and what we expect from her and her boyfriend if they are to be together. Sometimes she gets it other times I see her shut down and block out what we talk about.
I get mad at myself because I can't reach her.. I get mad because I don't know what part is her just being 20 years old and what part is JHD... I miss my daughter who came and talked to me about everything.. even the things i didn't want to know.. I have accepted that we lose her piece by piece.. What I struggle with is how she changes her mind and how we are always the bad people.. I don't know how to make it right with her.. and perhaps I can't.. If that is the case than I need to change my way of communicating with her and perhaps how we go about our daily lives..
I am not talking about her making a choice that we want.. I am talking about her stopping to look at the big picture.. I see that ability of her being torn down little by little... and it makes me sad...

When I try to explain why we do something or that we planning and why.. often times it won't sink in.. or she wont remember and than I am being to bossy with her.. Yes it is frustrating.. I am sure many JHD parents know..  But I still have guilt that We have to tell her everything and let her make her decisions..Yet she struggles with planning and following thur on plans on her own. She gets mad at me and than i feel like scum for the rest of the week..
Perhaps I just need to buck up and just do what is best for her? I know that I do, I just struggle with the guilt.

Landon & Gabe being silly

mommy and landon

Shawn is is the same.. The little boys and Gabe most of all cant understand that he cant throw a fit like Shawn and get away with it. It is hard for Landon and Gabe. Landon's heart is big and when he acts like a 7 year old I am shocked.. because he is usually so well behaved and loving. Gabe is a 4 year old who is trying to find his place.. he is such a mommy boy that at times i cant walk from one room to another with out him.. He is a loving little guy, but he picks up on Shawn's behaviors with out any problem.. the Good and the bad..
It is fine line to walk for all my kids. I feel many time I have let them down, I am trying and my love is unending, perhaps that's why it hurts so much when they are hurt or angry or just confused with me as their parent and their caregiver... I think I have have some growing to do also. I am far from perfect and always will be. I pray for them and ask that they may find God's love and that they may find peace and hope in HIM.

I don't mean to be whine or act like i have done nothing wrong in raising them. God know i have many epic fails.. in parenting and in life.. Some days it is hard to see any light and know that Life is Good.. (not perfect not wonderful, not horrible, or tragic, just good). Some days I see that light and hold fast to it knowing that it will get me thru the not so good times. But yesterday was a day that I lost the light, and I know it will come back, and God is with me, it is days like that that I have trouble seeing any light....


 I look at all my kids and see the people they are becoming I hope that in a small way they will look back and think of me and smile and say yep that was my mom and we knew she loved us. 

Amazing is our Lord

I still am in shock with the amount raised for our local HD chapter. I went to a meeting of the Iowa Pet Breeders in Ottumwa Iowa on Thursday Friday and Saturday. I did with my boss Dr. A G Beukelman DVM.. ( or as we know him Arnie) and with my wonderful husband Mike. There we talk to people about vaccines, worming  and all that stuff that goes with breeding dogs and cats.
Dr Beukelman had allowed me to set part of our booth with flyer about Landon and Kate and her battle with JHD..Terry Emmons from the Hunte Corp and Rob Hurd from APR and The board of Iowa Pet Breeders saw these and asked if they could have some bracelets to auction off at the IPBA annual auction ton Friday evening. I was humbled and was every happy to do so.
After a supper with Lots of Fun and talking, the Auction started... Than Rob Hurd announced that they were going auction off some bracelets made by a 7 year old boy who's sister has Juvenile Huntington’s disease. He also asked me and mike to stand up and we did..Than he told everyone in the room about JHD. He said how Landon is raising money for a cure and he been doing this for a year. 
Than the auction started: the opening bid was 100.00... than the next bid was called out 200.00 and than 700.00 and than 1000.00 and on... it stopped at 2500.00... tears rolled down my face. My whole body was shaking. My boss won the bracelets... and wrote the check for 2800.00... than he looked at Rob Hurd and said resell them!! and they did... and the opening bid this time?? 600.00 and than 800. and than 1000.00... and than they sold it again!! they sold the 3 little bracelets for a total of $4642.00... I cried and cried... and I hugged so many people. Even Mike may have shed a tear..We are humbled and we are grateful and most of all we are so very THANKFUL

the 3 most expensive bracelets i have ever held

They than gave the bracelets back to us... 
Now most of these people I have never met.. I have never seen.. and some I have never talked too. 
God was there that night.. 
I had a Amish man come to me and tell me " what a blessing!" and I said yes it has been and I am just in shock! He says to me" when God puts something into someone's heart, it happens." 
I could have not said it better my self. I am so humbled by the not only the amount of money rasied, but even more from the people who learned about JHD/HD and from their kind words and loving prayers. 

Yes, God is GREAT!! GOD IS PERFECT and faith in him is all we need! 
 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11
WE PRAISE OUR LORD AND IT IS ALL FOR HIS GLORY!!


http://www.facebook.com/pages/Avenue-Veterinary-Clinic
https://www.aprpets.org/
http://www.huntecorp.com/default.html
http://www.iowapetbreeders.com/aboutiowapetbreeders.html
http://www.iowapetbreeders.com/upcomingevents.html

Through the Eyes of Children

I  did not write this but I wanted to share it..... I am printing it out and putting on my wall... because sometimes the hardships of life make me forget all these little things and make life so perfect!!

Through the Eyes of Children
When I look at a patch of dandelions, I see a bunch of weeds that are going to take over my yard.
My kids see flowers for Mom and blowing white fluff you can wish on.

When I look at an old drunk and he smiles at me, I see a smelly, dirty person who probably wants money and I look away.
My kids see someone smiling at them and they smile back.

When I hear music I love, I know I can't carry a tune and don't have much rhythm so I sit self-consciously and listen. My kids feel the beat and move to it. They sing out the words. If they don't know them, they make up their own.
When I feel wind on my face, I brace myself against it. I feel it messing up my hair and pulling me back when I walk.
My kids close their eyes, spread their arms and fly with it, until they fall to the ground laughing.
When I pray, I say thee and thou and grant me this, give me that.
My kids say, "Hi God! Thanks for my toys and my friends. Please keep the bad dreams away tonight. Sorry, I don't want to go to Heaven yet. I would miss my Mommy and Daddy."

When I see a mud puddle I step around it. I see muddy shoes and dirty carpets.
My kids sit in it. They see dams to build, rivers to cross, and worms to play with.
I wonder if we are given kids to teach or to learn from? No wonder God loves the little children!

Enjoy the little things in life, for one day you may look back and realize they were the big things.

Some days I do get caught up in the worries and stress of life.. and than one of the boys or Kate will say something that stops me in my tracks... and than all the worries are gone ..if even for a moment. (exp: Gabe running around in a spider man mask.. and stops to say I love you mommy, BUG HUG MOMMY. or Shawn saying u make me smile today.or Landon getting home from school and finding me and wraps his arms around me and says I missed you today mom. and Kate saying "thank u" mom... 
They teach me so much.. God thank you for them for their smiles and for the hard times.. that make me love these little moments even more.

Kate's baby

baby girl at 20 weeks and 1 day.. 11oz and super cute!!

at 16 weeks

16 weeks

playing with her ears at 16 weeks just like mom

tiny foot

Kate baby at 20 weeks

So much is happening for this little girl.. We are so excited to meet her.. Knowing God has a plan for her and he knows her already.

The wonder of a new child is so overwhelming..
I look at Kate and see MY baby girl turning into a mother. I see how her hand rest on her tummy or how she touches her tummy.. I cant thank God enough for his blessings.. 
Kate has so much going on but yet for the most part she stays calm and happy.. Her giggles ring thur my heart as we talk about her baby and her brothers talk about the baby or about anything little boys talk about.. 
I wish that i could help her more.. take away the pains she experiences.. take away her worries and her fears..
But any mom feels that way..
She worries about her Boyfriend and his family.. she worries about the future hold for them and her and the baby.. She worries are based in truth .. I pray that God may give me and Mike the courage and strengths to help her and support her.
Kate's hope are that her boyfriend can come back to her healthy and whole.. that he can find his way to become the dad he will need to be. She knows this is not a change that happens overnight or in a months time.. It is life change. That it will take much courage and will power from him.. She knows the baby welfare is first in everyone mind.. She hopes and prays that we will all be able to work together and show her baby all the love we feel for her. She wants to make her boyfriend all better. and yet she knows that she can't do it for him that he has to take that on for himself.
 She has trouble with stress and worries.. So I pray that we can help her deal with it. I pray that the choices we make are based on love and for her benefit, and not on feeling that we may have.

We keep looking for ways to raise awareness for JHD and HD.. for I have found it frustrating and hard to travel thur the the social security and ssi and Medicaid highways. it is frustrating to find a dr that knows about HD yet we cant see him due to rules and regulations.. so we end up back at square one.
We searching for a dr to help Kate deal with her feelings and explain to her what is happening.. yet we are having trouble finding one.
Yet we have faith and knowledge that she will find her way.. That no matter what life brings we will trust in God to see us thur it.

We must trust in God for it thur him we have peace and hope.

MAD... sorry

http://highwire.stanford.edu/cgi/medline/pmid;22095692

So much hope we have... and yet someday it feels that the mighty dollars is all medical  field seems to care about.  I can't understand why the wait, why the dragging of feet. It is bad enough that so many kids and adults have Huntingtons, let alone the fact we have so many at risk.. WHY?? .
I sorry to ranting and rave.. Usally I am full of hope and prayers. I just read a artical and it makes me sooo upset that so much money is being spent and yet we HEAR NOTHING on treatments .. instead I get letters asking for more money and if we can sign Kate up for research... WHAT RESEARCH??
I still have hope and faith ... I know the cure is out there... They just can't seem to get out to the victims of HD and JHD. The fact is that if all these so called reseachers would stop looking at the bottom dolllar and WORK TOGATHER , the chances of moving forward would be a reality not just a dream... Why have 67 diffrent research labs that do not share information??? DOSE THIS MAKE SENSE??                                 
I am just so sick of getting request for money, and hearing "we are here for you, our families" we will help, just ask.. yet when a request is made there is no response.. OR worse I hear, "you have to talk to your local chapter. And see what they say, than u come back to us. But we really can't help all our families" The need is too great." oh and by the way, would you like to donate??"
I refuse to understand this.. I won't!! I get how the politics work, and since it is the mighty dollar that runs it all.. it make me sick to my stomch..
I know there is RESEARCH HAPPING  and there IS HOPE.. What I saying, "is that we as a whole,we need to stand up an shout, WE WANT RESULTS! WE WANT HDSA TO SHOW US WHAT OUR DOLLARS ARE BEING SPENT ON.. not some damn report that says x amount of dollrs are given for this and so on.. WE WANT TO SEE THE RESEARCH, WE NEED TO SEE THE RESEARCH"
We live with HD and lose our loved ones more and more each day! No more of these 1/2 hopes.. Give us some concert.. human trials or some thing.. AND FOR THE LOVE OF GOD, SHARE THE RESEARCH WITH EACH OTHER! I DON'T CARE WHO GETS THE CREDIT FOR FINDING SOME SORT OF TREATMENT.. THE ONLY THING THAT MATTERS IS THAT ONE IS FOUND, AND THAT WE CAN HAVE ACCESS TO IT!!

Sorry everyone, please know I do SUPPORT HDSA 100% AND THEY DO MANY GREAT THINGS!! My point here is more toward researchers.. that act like they can't share information!! My daughter will lose her fight with JHD, but God willing, her child will have a chance, if we can get these researchers to come together!!
families of the victims of HD and JDH know exactly what i am talking about. We seize anything that give us a chance to fight... The research about QZ10 has been going on for over 15 years!! and there is no real answer.. dose it help?? dose it not help?? even the Centers of Excellent have different opinions. I even had one DR tell the cure is about 6 months away.. I wish! Can we get the information togather and let our familes know??
there are some excellent bloggers that try to keep us all informed, but that is no enough..Kate's dr is not going to read a blogger and even if he does, getting the right information and making sure it is true, it another hurdle.
So where can a dr get the right information??
Ok i am done.. Have to take Shawn to his OT today and make sure his therapy is working... ( Shawn has aspergers. (they have a basic idea and plan) Even though there such a WIDE range of autism...
thanks for all the prayers and hope, and KEEP SUPPORTING HDSA!! THEY WILL ALL COME TOGETHER AND A TREATMENT WILL BE FOUND!