check out huntingtons radio the only radio station dedicated to hd. you can have a message or a song played just for you. live chat, phone inns,games and lots more so tune into huntingtons radio http://www.live365.com/stations/bigbrother55 enjoy
check out huntingtons radio the only radio station dedicated to hd. you
can have a message or a song played just for you. live chat,phone
inns,games and lots more so tune into huntingtons radio
http://www.live365.com/stations/bigbrother55 enjoy
In the study below, researchers showed that HD brain cells are much more sensitive to dopamine than non-HD cells. Dopamine levels which cause no harm to non-HD cells initiate cell death in the medium spiny neurons of the striatum of those with Huntington's Disease. Dopamine also contributes to aggregate formation. Although aggregates in and of themselves are probably not a primary defect, they do indicate early disease pathology.
There are two ways that mutant huntingtin and dopamine cause cell dysfunction and death. One is through the stimulation of an apoptotic signaling pathrway (in other words activating programmed cell death). The mediating factor here appears to be reactive oxidative species (small molecules which cause oxidative damage) -- and that's the connection with impaired cellular metabolism which is now believed by Marcy MacDonald and others to be a primary defect in HD. Dopamine can autooxidize and form ROS and this is associated with aging which may explain why even though the HD gene is present from birth, the disease is not.
The other way is through the stimulation of dopamine 2 receptors. The cells were rescued by a combination of ascorbate, an ROS scavenger, and a dopamine 2 receptor antagonist. Both were needed in combination to treat the cells!
This study is interesting for several reasons. First, it once again shows the value of testing combinations of potential therapies. Second, it reinforces the importance of antioxidants such as Vitamin C. Third, it suggests that neuroleptics which block the D2 receptor or which deplete dopamine might have therapeutic effects. Neuroleptics which are D2 antagonists include quetiapine (Seroquel), olanzapine (Zyprexa), resperidone, clozapine, and sulpiride. Tetrabenazine is a dopamine depleter.
--Marsha L. Miller, Ph.D. Posted to the HDL: 28 Sep 2005
Unraveling a role for dopamine in Huntington's disease: The dual role of reactive oxygen species and D2 receptor stimulation.
Charvin, D. , Vanhoutte, P., Pages, C., Borelli, E., Caboche, J.
Huntington's disease (HD), an inherited neurodegenerative disorder, results from an abnormal polyglutamine extension in the N-terminal region of the huntingtin protein. This mutation leads to protein aggregation and neurotoxicity. Despite its widespread expression in the brain and body, mutated huntingtin causes selective degeneration of striatal projection neurons. In the present study, we investigate the role of dopamine (DA) in this preferential vulnerability. Using primary cultures of striatal neurons transiently expressing GFP-tagged-exon 1 of mutated huntingtin, we show that low doses of DA (100 muM) act synergistically with mutated huntingtin to activate the proapoptotic transcription factor c-Jun. Surprisingly, DA also increases aggregate formation of mutated huntingtin in all cellular compartments, including neurites, soma, and nuclei. DA-dependent potentiation of c-Jun activation was reversed by ascorbate, a reactive oxygen species (ROS) scavenger, and SP-600125, a selective inhibitor of the c-Jun N-terminal kinase (JNK) pathway. By contrast, DA effects on aggregate formation were reversed by a selective D2 receptor antagonist and reproduced by a D2 agonist. Similarly, striatal neurons from D2 knockout mice showed no effect of DA on aggregate formation. Blocking ROS production, JNK activation, or D2 receptor stimulation significantly reversed DA aggravation of mutated huntingtin-induced striatal death. The combined treatment with the ROS scavenger and D2 antagonist totally reversed DA's effects on mutated huntingtin-induced striatal death. Thus, the present results provide insights into the cellular mechanisms that govern striatal vulnerability in HD and strongly support a dual role of JNK activation and D2 receptor signaling in this process.
-- To have a child is to know that your heart will forever walk outside your body...
You know what really BURNS MY BUTT, my mom and dad might be my parents and I don't mind taking care of them, but..........they are other people's family to...........do you get what I am saying here........where are they.........why the **** can't they come and take care of them some...........it's not like I'm asking them to come and take care of them all the time..........I just need a break for this surgery so I don't injure myself and have tmie to heal properly.........if they'd all pitch in they could do it in shifts and it would not be such a big deal.
************************************************
I hear ya sister! I have the same problem. I hope your other surgery goes well and I will definatly be thinking about ya. Please keep us updated on your progress.
I have been peeking at the posts here and there, but not responding really because I have not really been feeling well. So let me say welcome to the Newest members that I have missed.
I was very sad to hear of Chucks and Rhoda's passing. Please know you and your families are in my prayers. I know this is a very sad time for all of you and you are in my heart and in my prayers always.
I had my bladder surgery. The surgery itself went well. At first it seemed it might be helping, but now I see it has not made that much of a difference and I am still in pain. So after my hernia surgery I will be starting treatments for my bladder. I'm not looking forward to that, but don't know what else to do.
My hernia surgery is scheduled for Friday the 14th at 7:00 am. Please keep me in your prayers as I am still unsure how I am going to manage after the surgery. As you all know I have no help around here and my is now 20 months old, plus both my parents are ill. Now my dad can for the most care for himself as long as he is not having a bad day. So pray he has no bad days while I am down. The dr. says the first two weeks I am not allowed to do anything at all, and then the following 3 to 4 weeks no lifting anything over 15 pounds. Well, my mom is 125 lbs and my daughter is 25 lbs, and God forbid my dad has a bad day he is 160 lbs. I do have my 12 year old son if worse come to worse and he is home from school, but I absolutely hate to ask him to help with those things. I know how stressful it is for me, and I can only imagine the kind of stress it puts on him and so I try really hard not put it on him. With this surgery though if someone doesn't step up to the plate and
someone has to be lifted I don't know what else I'm gonna do. So PLEASE pray that someone will step up and HELP me this time. I do not want a repeat of my hysterectomy and rip my incision open because I was left to handle all of it on my own. The majority of my family is so damn selfish it's rediculous. I asked one of aunt's who doesn't work, who is young and healthy, who has no children, who has an abundance of energy, who would've been perfect to help me, she said yeah she would help, and then two days later called me and wanted to know how much I would pay her. When I told her I couldn't pay her and she said she would have to ask her husband and I never heard back from her. That was over a month ago. Most of my family just came up with excuses of why they couldn't do it, and most of their excuses were bull.
You know what really BURNS MY BUTT, my mom and dad might be my parents and I don't mind taking care of them, but..........they are other people's family to...........do you get what I am saying here........where are they.........why the **** can't they come and take care of them some...........it's not like I'm asking them to come and take care of them all the time..........I just need a break for this surgery so I don't injure myself and have tmie to heal properly.........if they'd all pitch in they could do it in shifts and it would not be such a big deal.
Well enough complaining. Just had to vent a little. Will let you know how my surgery goes when I am up to it.
Date: Thu, 29 Sep 2005 11:51:05 -0700 (PDT) From: mike fehr <gleneste1@...> Subject: Fwd: FW: Dr.Seuss for grownups] To: lilmomma8721 <lilmomma8721@...>, rhonda <sawedoffrunt69@...>, steph <Uhaircare@...>, amanda wooten <dwooten@...>, atessoff@..., jen athon <tupperjeni@...>, bengalz2003 <jrich71@...>, Jean-Nicole Bennett <maximgirl069@...>, mike bennett <mbennett23@...>, cflick1 <cflick1@...>, dad <rfehr53073@...>, "jackie \(at work\) fehr" <JTessoff@...>
this is funny
: forwarded message attached.
__________________________________________________ Do You Yahoo!? Tired of spam? Yahoo! Mail has the best spam protection around http://mail.yahoo.com From: Christy Blevins
<Christy.Blevins@...> To: 'kasey jones' <kaseydeadfam@...>, 'mike fehr' <gleneste1@...> Subject: FW: Dr.Seuss for grownups] Date: Thu, 29 Sep 2005 11:02:08 -0700
From: Sarah Bailey Sent: Thursday, September 29, 2005 1:43 PM To: 'Amanda Schneider'; Andy Hess; Bridget Ellery; 'Chris Styles'; Cassie Stockhoff; Christy Blevins; Carrie Farmer; Cathy Young; Christina Lykins; Dave Pannell; Doug Harvey; Eckner, Heather 019; Erica Cohen; Jodi Doherty; Jolana Hatmaker; Jessica Judd; Kelli Roden; Ken Adams; Karen Hasty; Lynn Pulaski; Liz Singer; Laura Tullis; Montez Shugars; Mark Scherer; 'Ronda Williams'; Renea Trotter; 'Stclair, Susan'; 'Shanna Seibert'; Stephanie Baker; Sonya Foor; Sarah Armstrong; Shiloh Stockhoff; Sara Bledsoe; Scott Sparks; Scott Lau Subject: FW: Dr.Seuss for grownups]
From: Salyers, Jennifer [mailto:Jennifer.Salyers@...] Sent: Thursday, September 29, 2005 1:53 PM To: Reeves, Neil; Olivo, Joseph; Osborn, Angela; E Hampton; Heather West; Eckner, Heather 019; Sarah Bailey; Jacqui Wright; KriCode1@... Subject: FW: Dr.Seuss for grownups]
From: nrutz [mailto:nrutz@...] Sent: Thursday, September 29, 2005 1:46 PM To: Cyndi Brown; Jen Scott; Salyers, Jennifer; Jenny Beckman; Kelly Clos; Sue Follick; Tim Hannon Subject: FW: Dr.Seuss for grownups]
Nicole Rutz
Team Schupp
-----Original Message----- From: Smith, Tiffany [mailto:Tiffany_Smith@...] Sent: Thursday, September 29, 2005 7:55 AM To: Pennington, Alma; Green, Brittney; Debbie Terry (debbieterry@...); Josh (jdean198@...); Kristy St George (hairflair@...); Ruhe, Lori; Kuhnemund, Matt; Dittly, Michele; Nicole Rutz (nrutz@...) Subject: FW: Dr.Seuss for grownups]
From: Idle, Jessica Sent: Thursday, September 29, 2005 8:48 AM To: Smith, Tiffany; Milburn, Wes Subject: FW: Dr.Seuss for grownups]
From: Sexton Anneliese E Civ 96 CPTS/FMFL [mailto:anneliese.sexton2@...] Sent: Thursday, September 29, 2005 8:39 AM To: 'SEXTON, JAMES'; 'Idle, Jessica'; 'A.J Smith'; 'RichardSexton913@...'; JANARAN@...; Baldwin Vicky A GS-12 AAMSW/FM; Horn Joan L GS-13 96 CPTS/FME; Coty Carol A Civ 33 FW/FMA Subject: FW: Dr.Seuss for grownups]
Just a little humor to get us started!
Anneliese Sexton 96 CPTS/FMFL DSN 872-2001 -----Original Message----- From: Galvan Patricia E GS-12 AAC/FMAO Sent: Thursday, September 29, 2005 7:33 AM To: 'Alyssa Bonet'; 'Akers, Teresa A Ms AMEDDCS'; Aunt Lynda (E-mail); 'Anna-Lisa Solis'; Chapel April D Civ AAC/FMAO; Sienkowski Christine J 1Lt 27 CPTS/FMA; Fohner Dwight W Contr RISS/DOP; Garnett Sylvia M Civ 68 EWS/EWS; Gibbons Sherry L Civ AFSPC CSS/SCTP; 'Pilar Garza'; 'Garza Rolando'; Pierce Kathleen S GS-12 USAFE FM/FMAI;
LaBrecque Eileen M Capt AAC/FMA; Morales Maria Contr AAC/YV; nicole cavazos; Tisdale Patricia A Civ 542 SEVSG/GBZV; 'Steve & Pat'; Speegle Michelle A GS-07 AAC/XP; Sexton Anneliese E Civ 96 CPTS/FMFL; McDaniel Joseph L Civ AAC/FMAO
Subject: FW: Dr.Seuss for grownups]
V/R Pati Galvan - FMS Budget Analyst DSN 872-4538 COMM (850) 882-4538 FAX 882-9387 patricia.galvan@...
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Can everyone help me out with this one, i emailed her already but would like more advice to give her. My group hasn't been very active lately so I'm reaching out to others. Please email what you would want to tell her and I will forward it to her.
Thanks,
Lynn
-------------original message-------------- hi my name is jackie im 34 and have huntingtons. I just had to put my father in a nursing home last year for hd also, very tuff decision. my grandma died of hd in 2000 right after her sister did. now i just found out my brother has hd too. my sister has decided not to be tested. its frusting because i adopted my daughter 3 years ago. i thought my hd would start later in my life. im afraid i just want to see her grow and fall in love and do all the things that i always dreamed my child doing. . I love her so much. its painful because i see how she knows mommys different. im pretty positive. ive gone through so much in my life in 1993 i was robbed and attacked and suffered severe damage to my body. i lost the use of my left arm due to rsd and thoracic outlet syndrome. eventually the rsd spread to my leg- rsd causes severe pain. ive had to have two implanted spinal cord stimulators put in my back to try to help the pain. Ive had severe migraines since 1993. and even though i still go through pain from my attack every day hd scares me more. my right hand started having tremors, and my upper body is not balanced, i sorta sway. last winter i fell 8 times, i fell 1 time this year. the last two years ive had to have spinal cord surgery because of my falling. i dont want my daughter to have to grow up and see her mommy detoriate. my husband is angry hes afraid too. i love my husband and daughter.
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HDSA Car Magnets Proudly show your support to HDSA with this car magnet. Magnets are sold 5 to a pack for $20 (Plus S&H $5.00). Proceeds from this sale will benefit research.
Expansion of polyglutamine (polyQ) tracts in proteins results in protein aggregation and is associated with cell death in at least nine neurodegenerative diseases. Disease age of onset is correlated with the polyQ insert length above a critical value of 35-40 glutamines. The aggregation kinetics of isolated polyQ peptides in vitro also shows a similar critical-length dependence. While recent experimental work has provided considerable insights into polyQ aggregation, the molecular mechanism of aggregation is not well understood. Here, using computer simulations of isolated polyQ peptides, we show that a mechanism of aggregation is the conformational transition in a single polyQ peptide chain from random coil to a parallel beta-helix. This transition occurs selectively in peptides longer than 37 glutamines. In the beta-helices observed in simulations, all residues adopt beta-strand backbone dihedral angles, and the polypeptide chain coils around a central helical axis with 18.5 +/- 2 residues per turn. We also find that mutant polyQ peptides with proline-glycine inserts show formation of antiparallel beta-hairpins in their ground state, in agreement with experiments. The lower stability of mutant beta-helices explains their lower aggregation rates compared to wild type. Our results provide a molecular mechanism for polyQ-mediated aggregation.
Armen RS, Bernard BM, Day R, Alonso DO, Daggett V. Characterization of a possible amyloidogenic precursor in glutamine-repeat neurodegenerative diseases. Proc Natl Acad Sci U S A. 2005 Sep 12;
Several neurodegenerative diseases are linked to expanded repeats of glutamine residues, which lead to the formation of amyloid fibrils and neuronal death. The length of the repeats correlates with the onset of Huntington's disease, such that healthy individuals have <38 residues and individuals with >38 repeats exhibit symptoms. Because it is difficult to obtain atomic-resolution structural information for poly(L-glutamine) (polyQ) in aqueous solution experimentally, we performed molecular dynamics simulations to investigate the conformational behavior of this homopolymer. In simulations of 20-, 40-, and 80-mer polyQ, we observed the formation of the "alpha-extended chain" conformation, which is characterized by alternating residues in the alphaL and alphaR conformations to yield a sheet. The structural transition from disordered random-coil conformations to the alpha-extended chain conformation exhibits modest length and temperature dependence, in agreement with the exp erimental observation that aggregation depends on length and temperature. We propose that fibril formation in polyQ may occur through an alpha-sheet structure, which was proposed by Pauling and Corey [Pauling, L. & Corey, R. B. (1951) Proc. Natl. Acad. Sci. USA 37, 251-256]. Also, we propose an atomic-resolution model of how the inhibitory peptide QBP1 (polyQ-binding peptide 1) may bind to polyQ in an alpha-extended chain conformation to inhibit fibril formation.
-- If a man opens a car door for his wife, it's either a new wife or new car.
The article will appear in tomorrow's paper, the discussion Monday at 1 PM ET
Gene shared the below with me. I've submitted a question for Dr. Nance on JHD....hopefully they will select it ask Dr. Nance! As the site indicates "Editor's Note: Washingtonpost.com moderators retain editorial control over Live Online discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions."
You've have to be a registered Washington Post user, but it only takes a second to join!
Dear Jean: The Washington Post will have an article by HD researcher Dr. Martha Nance this Sunday 9/26 and a chat with her on Monday 9/27. See the plug below. Yours, Gene Veritas HD At-Risk Blog
Monday, Sept. 26, at 1 p.m. ET Outlook: Huntington's Disease Incurable Disease Looms Before Those With Gene Dr. Martha Nance Struthers Parkinson's Center and the University of Minnesota Monday, September 26, 2005; 1:00 PM
Today there are thousands of Americans who have had themselves tested for the gene for Huntington's Disease and know they will get it. They've seen a parent suffer with it or die from it. But there's still no cure. As genetic testing advances, more and more Americans could find themselves in similar positions, dreading an all-too-familiar fate.
In an article in Sunday's Outlook section, Dr. Martha Nance, a Minneapolis neurologist who runs a Parkinson's Disease clinic and who is doing research on treatments for Huntington's, discusses the moving tale of one person who has the gene and the race to find a way to treat people like him.
Dr. Martha Nance will be online Monday, Sept. 26, at 1 p.m. ET to discuss her Sunday Outlook article on Huntington's Disease.
Am forwarding Leo's message for anyone in or near Indiana in case you'd like
to plan on participating or supporting these:
October 1st - Annual Walk
October 8th - State Conference
November 12th - Hoop-A-Thon
----- Original Message -----
From: "HDSA Indiana Chapter" <info@...>
To: <jemiller@...>
Sent: Tuesday, September 20, 2005 8:09 AM
Subject: HDSA Indiana Chapter Update
Hello everyone,
The Indiana Chapter of HDSA has some upcoming events!
The 1st Annual Walk in memory of Nancy Jones-Irwin will be Saturday,
October 1, 2005. Registration is 8:00- 9:00 am with walk starting about 9:00
am. It will be held at Southeastway Park. The park?s address is: 5624 S.
Carroll Rd. in Indianapolis. For more information, you can go to the walk
website at: http://www.nancyirwinwalk.org/
Our annual gathering for the Huntington's community throughout the state
will be held on Saturday, October 8, 2005 at the Hilton North, at 8181 North
Shadeland Avenue, formerly the Omni North Hotel in Indianapolis. Everyone
is welcome. You can go to this link for the registration form:
http://www.hdsaindiana.org/2005%20in%20conf%20flyer.doc
On Saturday, November 12, 2005 there will be a Hoop-A-Thon at St. Richards
School in Indianapolis. The school is located at 33 East 33rd Street. The
event runs from 8:00 AM to 10:00 AM. Please write or call if you would like
more information.
You can check out our web site: www.hdsaindiana.org for more information on
the happenings and support groups in Indiana.
Please call (317) 271-0624 or email info@... for more info.
Two links on great articles on kids being caregivers were posted on Hunt-Dis. They're really an eye opener when you read over 1 MILLION kids are helping with caring for a parent!! These are something every HD family should read and, if they're kids are helping at home, sit down and talk to them about how they're feeling about their help, maybe discussing the article with them for openers.
Both Susie & I know, from being the adult advisors to our young people in the HDSA National Youth Alliance, that a lot of our children are afraid of burdening a parent with HD or the caregiver parent with things that might be bothering them. This often leads to depression or feelings of frustration.
Caregiving affects the lives of children in myriad ways, from the way they spend their time to how they feel about themselves.
Among findings from a new National Alliance for Caregiving study:
Child caregivers tend to be more anxious and depressed than their non-caregiving peers. Those in minority households are more likely than non-minorities to have felt sad in the past week and to report that they often feel it is no use letting their feelings show. That may be because fewer minority caregivers have someone else helping with caregiving tasks, the report says.
Caregivers are more likely to feel at least some of the time that no one loves them. Kids ages 8 to 11 complain of feeling worthless or inferior; those 12 to 18 are moodier than their non-caregiving peers.
Teen caregivers (12 to 18) have more trouble getting along with teachers, are more likely to bully others, misbehave at school and associate with kids who get in trouble.
Girls and boys who are caregivers may be affected differently. Boys are twice as likely to feel that it is "no use" to show their feelings.
One in five young caregivers miss a school activity or after-school activity; some say they skip homework.
Children 8 to 11 are more likely to show anxiety, depression and antisocial behavior when they live in the same house as the person for whom they care.
On the positive side, caregivers tend to feel more appreciated and less likely to feel that people expect too much from them.
Excerpts: More than 1 million children in the USA take care of sick or disabled relatives, shopping, feeding, dressing, medicating and even changing adult diapers. It is the first to document what advocacy groups call a hidden national problem.
58% of child caregivers help with at least one routine daily activity, such as bathing, dressing, getting in and out of beds and chairs, eating, and using the toilet or changing adult diapers.
Nearly all help with shopping, household tasks and meal preparation,
The 1.3 million to 1.4 million child caregivers, ages 8 to 18, have responsibilities more suited to adults, the national survey says.
Child caregivers largely have remained hidden and often stay silent because they fear being separated from parents.
Most care for parents and grandparents who have ailments such as Alzheimer's disease and cancer.
At least 75% get some help, but half say they spend a substantial amount of time caregiving.
And even those who are not the primary caregiver perform many tasks by themselves.
USA TODAY 7950 Jones Branch Drive McLean, VA 22108-0605 How do I submit a letter to the editor? We welcome your comments. Please include your full name, address and day and evening phone number so we can verify your letter. Submissions are edited for length, accuracy and clarity. Letters of 250 or fewer words have the best chance of being published. Email letters to the Editor to: editor@...
For anyone in the vacinity....put this on your calendar! I've never heard
Dr. Kostyk speak, but everyone says she is wonderful! Most of us know Jim
Pollard and already KNOW he is wonderful!
RSVP no later then September 28th - attached is the form.
From: "Robin VanGorder" <robin@...>
Sent: Tuesday, September 20, 2005 12:05 PM
Subject: HD Caregiver Conference
Hi Everyone...
I just wanted to pass along some information on an upcoming conference on
caring for HD patients that is being hosted by the Central Ohio Chapter.
The event will take place in Dublin, OH on Saturday, October 8, 2005 - and
they've scheduled two wonderful speakers. I've had the privilege of hearing
both of these speakers and you just can't miss this!
Dr. Sandra Kostyk - directs the Center of Excellence at Ohio State - she
spoke at the research forum our support group hosted in 2003. And Jim
Pollard is widely respected for his expertise in caring for people with HD -
I had the pleasure of participating in his workshop at the 1999 national
convention in Washington D.C. He has written several very important HD
patient care guides also.
I'm trying to help the folks in Columbus drum up some support. So....
*please* if you can get away on that Saturday... *it will definitely be
worth your time!!* My friend, Elaine Vuyk, and I will be there - hope to
see you too!!
Thanks for your time,
Robin VanGorder
HDSA Toledo Support Group
Fee: $30.00 Professionals
$15.00 Caregivers, family members
Fee includes breaks, box lunch
Continuing education credit for: SW(5.5),RN(7.2),LPN(7.2).
Professionals must attend the entire conference and complete the evaluation.
Must have license number for registration and continuing education credit.
Make checks payable to: Central Ohio Chapter HDSA and send to:
Barb Heiman LISW
1060 Olmstead Rd.
West Jefferson, OH 43162
The HD CAG Repeat Implicates a Dominant Property of Huntingtin in Mitochondrial Energy Metabolism.
Seong, Ivanova, Lee, Choo, Fossale, Anderson, Gusella, Laramie, Myers RH, Lesort M, Macdonald ME
The expanded HD CAG repeat that causes Huntington's disease (HD) encodes a polyglutamine tract in huntingtin that first targets the death of medium spiny striatal neurons. Mitochondrial energetics, related to N-methyl-D-aspartate (NMDA) Ca(2+)-signaling, has long been implicated in this neuronal specificity, implying an integral role for huntingtin in mitochondrial energy metabolism. As a genetic test of this hypothesis, we have looked for a relationship between the length of the HD CAG repeat, expressed in endogenous huntingtin, and mitochondrial ATP production. In STHdh(Q111) knock-in striatal cells, a juvenile onset HD CAG repeat was associated with low mitochondrial ATP and decreased mitochondrial ADP-uptake. This metabolic inhibition was associated with enhanced Ca(2+)-influx through NMDA receptors that, when blocked, resulted in increased cellular [ATP/ADP]. We then evaluated [ATP/ADP] in forty human lymphoblastoid cell lines, bearing non-HD CAG lengths (9-34 units) or HD-causing alleles (35-70 units). This analysis revealed an inverse association with the longer of the two allelic HD CAG repeats in both the non-HD and the HD range. Thus, the polyglutamine tract in huntingtin appears to regulate mitochondrial ADP-phosphorylation in a Ca(2+)-dependent process that fulfills the genetic criteria for the HD trigger of pathogenesis, and it thereby determines a fundamental biological parameter - cellular energy status, that may contribute to the exquisite vulnerability of striatal neurons in HD. Moreover, the evidence that this polymorphism can determine energy status in the non-HD range suggests that it be tested as a potential physiological modifier in both health and disease.
Only 13 more hours till this auction ends!! Please do what you can to help get a donation to the HSDA!! Every little bit helps. This is helping us all in the steps to finding a cure!!
Thanks Lynn I appreciate it. I don't the date yet of when I will be going in or how long they will keep me. Sometimes they keep they keep a day or two and sometimes longer. But if anyone would like to get in touch with me while I'm in the hospital please feel free to call me on my son's cell phone which I will be taking with me so I can have something to do while I am there. That number is 513-257-9609. I will be able to sign onto YM on that phone as well, but it is very slow to chat on so if I sign on and it says I'm mobile please understand that I will be slowing chatting.
Subject: Re: [HDMeetings] Update on my kidneys and bladder....
You will be on my thoughts and prayers.
Lynn
-------------- Original message --------------
Well, the doctor had someone else take a look at my CT scan and decided that my IC was acting up and the my left ureter is partially blocked. So there is not a stone but I have to have surgery to have my ureter opened up. They will stretch it and put a stint in. They will also be stretching my bladder again and putting medicine in it, and then I will have to start treatments again on my bladder. Which I absolutely HATE!!! And every stint I have had has been painful and has slipped out of place so they are a big pain in the who know what and I am not looking forward to this. I know I will be in more pain when it is done for awhile then I was before I went in, but if I don't do it the pain I am having now will just keep getting worse till I just can't stand it anymore and I am almost there now. It is making me sick as it is now and very irritable. I can't stand to do anything. Moving hurts and makes me more nauscious, and they want me to eat. HA!!! Maybe someday if they ever get m
Also, I got a second opinion on the Ketones in my urine and that Dr. also said I am not eating enough. I've been monitoring my sugar at home, and I've only had one slightly high reading the rest have been kind of low which would make sense I don't eat enough.
When they get this surgery done and I am over the nausea I will try harder to eat more, but if it makes me sick I don't know what to do.
Please pray that this time the surgery doesn't make me hurt worse and that the stint will not be painful and will stay in place till it is time to come out. Also pray that the treatments don't affect me the way that they did the last time I had to take them.
Well, the doctor had someone else take a look at my CT scan and decided that my IC was acting up and the my left ureter is partially blocked. So there is not a stone but I have to have surgery to have my ureter opened up. They will stretch it and put a stint in. They will also be stretching my bladder again and putting medicine in it, and then I will have to start treatments again on my bladder. Which I absolutely HATE!!! And every stint I have had has been painful and has slipped out of place so they are a big pain in the who know what and I am not looking forward to this. I know I will be in more pain when it is done for awhile then I was before I went in, but if I don't do it the pain I am having now will just keep getting worse till I just can't stand it anymore and I am almost there now. It is making me sick as it is now and very irritable. I can't stand to do anything. Moving hurts and makes me more nauscious, and they want me to eat. HA!!! Maybe someday if they ever get me healthy enough to eat I will eat. Anyway, just wanted to update you all whats going on with that.
Also, I got a second opinion on the Ketones in my urine and that Dr. also said I am not eating enough. I've been monitoring my sugar at home, and I've only had one slightly high reading the rest have been kind of low which would make sense I don't eat enough.
When they get this surgery done and I am over the nausea I will try harder to eat more, but if it makes me sick I don't know what to do.
Please pray that this time the surgery doesn't make me hurt worse and that the stint will not be painful and will stay in place till it is time to come out. Also pray that the treatments don't affect me the way that they did the last time I had to take them.
Well, the doctor had someone else take a look at my CT scan and decided that my IC was acting up and the my left ureter is partially blocked. So there is not a stone but I have to have surgery to have my ureter opened up. They will stretch it and put a stint in. They will also be stretching my bladder again and putting medicine in it, and then I will have to start treatments again on my bladder. Which I absolutely HATE!!! And every stint I have had has been painful and has slipped out of place so they are a big pain in the who know what and I am not looking forward to this. I know I will be in more pain when it is done for awhile then I was before I went in, but if I don't do it the pain I am having now will just keep getting worse till I just can't stand it anymore and I am almost there now. It is making me sick as it is now and very irritable. I can't stand to do anything. Moving hurts and makes me more nauscious, and they want me to eat. HA!!! Maybe someday if they ever get
me healthy enough to eat I will eat. Anyway, just wanted to update you all whats going on with that.
Also, I got a second opinion on the Ketones in my urine and that Dr. also said I am not eating enough. I've been monitoring my sugar at home, and I've only had one slightly high reading the rest have been kind of low which would make sense I don't eat enough.
When they get this surgery done and I am over the nausea I will try harder to eat more, but if it makes me sick I don't know what to do.
Please pray that this time the surgery doesn't make me hurt worse and that the stint will not be painful and will stay in place till it is time to come out. Also pray that the treatments don't affect me the way that they did the last time I had to take them.
Subject: <Dachsie World> Attention list owners Passing this ON Date: Tue, 6 Sep 2005 12:56:24 +0000
If someone by the name of itsgarry@... wants to add you to your list dont accept it. Its a virus. Tell everyone on your list because if somebody on your list adds them you will get it too. Tell everyone on your list not to open anything from angell11, tewwtuler, and sassybitch. It is a hard drive killer and a very horrible virus. Please pass this on to everyone on your list. We need to find out who is using these accounts. Sorry for the inconvenience. Right click on your group name of your buddy list and click Send Message to all.
Human mom to 6 Barney - red male standard smooth dachshund Abbie - red female standard smooth dachshund Dixie - red female standard LONG haired dachshund Daisey and Katie - red with black overlay female standard LONG haired dachshund Betsey Jean - dapple female mini dachshund & Eeyore - black and tan female standard smooth dachshund Who went to live at my girl friends house, as then she is a only dog, and she does better this way.
HDSA is coordinating efforts to identify and locate HD families who have been displaced and/or affected by Hurricane Katrina, and help them receive appropriate medical care and support services. We request your help in this effort.
Please notify us of any HD patients/families you know who have been displaced or are in need of help
If you have a local center where displaced persons are being processed, please find out how you can contact the people managing intake to make them aware that we can help with medical and social resources for HD patients and families.
Distribute our email, Katrina@... and our number 1-800-345-HDSA (4372) extension 26 to patients, families and medical personnel to request help or provide information.
Please forward any other ideas you have on how we can identify our families and help bring them relief for Fred Taubman (212 242 1968 ext 29 ftaubman@...), who is coordinating these efforts.
Thank you for your help. We hope that through these efforts we will help the HD patients and families affected by this tragedy.
I'm going to the Dr. I'm pretty sure I have bladder infection and kidney stones again. Gettin ready to go the Dr. I almost always end up in the hospital over this. Partially because I don't get to the Dr. when I need to. I had two different appointments and had to cancel, and now I'm really feeling lousy. So I might be offline for a few days. See ya'll when I get back.
I'm very sorry that you have been diagnosed with HD. This group is very underdeveloped and because of that I am sending you two other links that I would like you to check out and join. They are wonderful groups and I know you will find them very helpful. The HD community on yahoo is very much like family to me and I am sure it will become like family to you as well.
My name is Rhonda and I am AtRisk for HD. I am a 36 yr. old single mother of two beautiful children also AtRisk, and caregiver for both parents. My mother has HD and my father has heart disease and chronic emphysema.
This first group is for those AtRisk, but also has many members who have been diagnosed positive.
Please be sure to join them at the very least the AtRisk group will be great for you. Also if there is anything I can do for you do not hesitate to ask. I sent an invite to you to let me add you to Yahoo messenger. My yahoo ID is sawedoffrunt69. If you do not have yahoo messenger I strongly suggest you download it as many of us in the HD community do have it and you can almost always find someone online 24/7 if you need to talk.
I'm very sorry that you have been diagnosed with HD. This group is very underdeveloped and because of that I am sending you two other links that I would like you to check out and join. They are wonderful groups and I know you will find them very helpful. The HD community on yahoo is very much like family to me and I am sure it will become like family to you as well.
My name is Rhonda and I am AtRisk for HD. I am a 36 yr. old single mother of two beautiful children also AtRisk, and caregiver for both parents. My mother has HD and my father has heart disease and chronic emphysema.
This first group is for those AtRisk, but also has many members who have been diagnosed positive.
Please be sure to join them at the very least the AtRisk group will be great for you. Also if there is anything I can do for you do not hesitate to ask. I sent an invite to you to let me add you to Yahoo messenger. My yahoo ID is sawedoffrunt69. If you do not have yahoo messenger I strongly suggest you download it as many of us in the HD community do have it and you can almost always find someone online 24/7 if you need to talk.
Hi everyone!! Just wanted to introduce myself.. My name is Lynn, I am
23 years old and have been diagnosed with huntington's disease in July
of 2004. I've grown up with it all of my life, my mother died
christmas day, 2003, my grandfather had it, deceased, an uncle,
deceased. Others in my family who have it and are alive besides me
are my brother, 2 uncles, 1 aunt, and 11 of my cousins. There are many
others, but I can't remember right now. I am the only one who is
nonsymptomatic so far.
Lynn
a story about stem cells is a story about hope. which my dictionary
tells me is to cherish a desire. for paul gallagher a 26 year old
from edinburgh he found out 5 years ago he had huntington's disease.
huntington's is a genetic condition that attacks nerve cells in the
brain. usually sufferers find out between the ages of 30 and 50 that
they have been given a death sentence. but dispite being so young
paul is already showing some of the classic signs of huntington's.
uncontrollable twitches and forgetfulness. huntington's has plagued
pauls family for generations. he was 8 when his mum hellen first
found out she had inherited huntington's from her father.for more
than 10 years paul helped nurse his mother through the condition. his
mum was only 42 when she died just a couple of months later pauls
uncle who also had huntington's died too.the symptoms can vary but
usually sufferers only have around 15 to 20 years to live after
diagnosis. pauls sister has just had the test to see if she has the
hd gene and it was very sad news for her and her family. she had it
too.but dispite lots of research into the condition there still no
sign of a cure.however a private american foundation (the high q
foundation) dicided to sponsor the huntington's project with over
$57.000.000. the euro-hd network aims to provide a platform for
professionals and people affected by h.d to assist working together
throughout europe. it aims to facilitate natural history studies and
interventional trials meeting high standards thus helping on the road
towards a cure for h.d. paul is among the first in scotland to
registar for euro hd this month.but i think stem cells will bring
hope and not only to people with hd. if debilitating illness can be
conquered with stem cell therapy why is it so controversial. isn't it
a medical miracle to be celebrated ? yes and no. though we stand on
the threshold of the realm of possibility we are not yet inside it.
the door opened by science include one marked moral dilemma. many
scientists believe that stem cells from human embryos offer even more
hope for cures than the ones found in bonemarrow. yet to destroy
embryos to create stem cell therapies is an unforgivable obstacle for
many people.hope must break through the rhetoric. my own hope the
disire i cherish is that we can freely discuss the complex sometimes
uncomfortable,friction between science and ethics. that is what this
stem cell story is about.
http://groups.msn.com/scottishhuntingtons