and we look forward to chatting again on Wednesday.

Thanks to Pam, Teresa, Lauren, Shari, Kayleigh, and Suki for their attendance today.

Love and hugs to all and all your loved ones,

Sue & Kelly

as I'm so tired but there are still people in the room.

Thanks to Teresa, Matt, Terri, Kayleigh, Katie, Susan and Debbie for their attendance today.

Love and hugs to all and all your loves ones,

Sue & Kelly

but there are still some people in there at present.

Thanks to Teresa, Susan, Lauren, Matt, Kath, Hugh, Kayleigh, and Mary for your attendance today.

Love and hugs to all and all your loved ones,

Sue (and Kelly)

if anyone wants to join me.

Chat Room 

Sue

I'm not going to be available for the chat today as I'm going out to avoid the paint fumes since I can't ventilate adequately due to wind and rain.... grrrr! It does look as if tomorrow will be the final day of the current scheduled work so I should be able to get back into my normal routine soon.

Love and hugs to all,

Sue

but there are still a few people in there at present. Thanks to Teresa, Pam, Matt, Kayleigh, Angie, Debbie, and Lauren for their attendance today.

Wishing everyone the best weekend possible,

Love & hugs,

Sue & Kelly

if anyone wants to join us.

Chat Room 

Sue

--- In huntingtonsdiseasesupportclub@yahoogroups.com, Tonia <happytonia4@...>
wrote:
>
> howdy  sue,
>  i hope and pray that all that work gets done fast.
> so that you can have some quiet time !
> your head ache and you deserve so much better than  
> all that pain.
> you should try to figure out a different places or places
> that you can go and be away from your house so you can
> get peice and quiet.
>     i love you so much
>      tonia
>  you are the only person in this life who can make you happy.
>  so start smiling and laughing because you can.                             
    
>  Love Hugs And Prayers
>       Tonia                         
>
> http://www.hdsa.org
>
>
> --- On Wed, 3/18/09, Sue <sue_twin2@...> wrote:
>
> From: Sue <sue_twin2@...>
> Subject: [Huntingtons Disease Support Club] Re: Club Chat, 3/18/2009, 1:00 pm
> To: huntingtonsdiseasesupportclub@yahoogroups.com
> Date: Wednesday, March 18, 2009, 9:57 AM
>
>
>
> Hello i haven't been on to much either. How is everyone?
>
>
>
>
>
>
>
>
>             I'm really sorry but I won't be attending chat today as the
workmen are staying late to try and catch up in order to complete the work this
week, hopefully, and I have a splitting headache from all the drilling noise,
etc.
> I hope to be available for Friday's chat.
> Love and hugs to all,
> Sue
>

Hi all,

I haven't been around much at all lately, HD has affected my family quite badly
at the moment and my husband is now in full time care which means I have lost a
few services around the house that we had before.

Also my son is in late stages of JHD and is 11 so I am a full time carer to him
which is quite full on.

However I am wondering if Rich is still active in the HD community. If so I want
to say hello and let him know that Bailey is now 11 and although progressed into
the disease a lot more, he is still as independent as he can be and still as
mischievous as he always was.

Would love to hear from anyone who knows Rich and if you are reading this Rich,
we haven't forgotten you.

Debbie (Australia)

Hello to all who attend the chatroom.  I just wanted you to know I have been so
busy lately at all the chat times.  I'm hoping to attend tomorrow.  I just
wanted to let you know how important the room is to me and that get a lot out of
it and hope I contribute my share as well. Chat with you all soon I hope.......
Mary

I'm really sorry but I won't be attending chat today as the workmen are staying late to try and catch up in order to complete the work this week, hopefully, and I have a splitting headache from all the drilling noise, etc.

I hope to be available for Friday's chat.

Love and hugs to all,

Sue

but there are still people in there at present.

Thanks to Pam, Onions, Teresa, Lauren, Kayleigh, Liz, Lillian, and Mary for your attendance today.

Love and hugs to all and all your loved ones,

Sue & Kelly

Come join us!!!!!

http://pub43.bravenet.com/chat/show.php/3651366053

Matt.

Due to the total chaos at home with my building works now in 3 rooms, I won't be available for the chat today - sorry! I hope to be availabale for Friday's chat, all being well.

Love & hugs to all,

Sue

but there are still quite a few people in there at present. Thanks to Teresa, Terri, Lauren, Susan, Matt, Kayleigh, and Liz for their attendance today, and anyone else I missed having forgotten that the clocks changed in America already!

Love & hugs to all and all your loved ones,

Sue & Kelly

See ordering information below the news article.

Jim Calhoun publishes book for caregivers
http://www.furnituretoday.com/article/189574-Jim_Calhoun_publishes_book_for_care\
givers.php
Former Norwalk executive shares experiences, advice
Gary Evans -- Furniture Today, March 6, 2009

ATLANTA - Industry veteran Jim Calhoun has had a long career developing and
merchandising upholstery for the former Norwalk Furniture and as a
consultant to manufacturers and retailers.

Few of his colleagues know, however, that during the past 20 years, he's
also helped provide care for five family members -- most recently his
sister, who died last year of Huntington's disease.

Those who did know about this involvement were often friends who came to him
for help in similar circumstances. Calhoun responded with calls and e-mails
detailing ideas, resources and experiences, and let it go at that. But that
changed on the day after Christmas in 2000. Calhoun was taking his
traditional vacation at the beach when something told him his experience and
knowledge were bigger than a few e-mails and verbal advice.

See link for rest of the article
=====================================
Author's Bio: http://www.authorsden.com/visit/author.asp?AuthorID=94616

Ordering - It's available from several on-line bookstores.  According to
HDSA's website
http://www.hdsa.org/how-you-can-help/shop-hdsa-affiliates.html  - $1 of each
book purchase via the HDSA site will go to HDSA. Or, when ordering from the
CaregivingCare site please make a note that you were refered through the
HDSA Website

$7.99 e-Book
http://tatepublishing.com/bookstore/book.php?w=978-1-60604-615-9
This book is also available as an e-book download from the Publisher. eBooks
where instead of receiving a physical paper book in the mail, you would be
given access to the eBook file for this complete book. Within minutes you
can be reading this book on your computer, PDA, cellphone or a stand-alone
eBook reader (such as the Sony Reader)-at a reduced cost! Click the "Order
Online" button on the website to purchase this eBook download today!

"Lessons from the Ancients: A Humorously Helpful Guide for Caregiving"
A guide for caregivers created to inform, educate, and inspire.
By J. Dyess Calhoun
List Price: $12.99 -
http://stores.caregivingcare.net/-strse-32/Caregiver%27s-guide-cln--Lessons-from\
/Detail.bok
For check or money orders, send to: 1776 Ventures, PO Box 8536, Atlanta, GA
31106.
Or e-mail questions or requests to: care4caregiver@...
Format: Paperback
Publish Date: February 2009
ISBN-10: 1606046152
ISBN-13: 9781606046159
Pages:158
Publisher:Tate Pub & Enterprises Llc

One in five Americans are caregivers to either a family member or a friend.
70% or more of Americans are not prepared for the challenges and the rewards
that will come their way in late life. Most of us as caregivers have no idea
of the financial, legal, medical, household, psychological, and relationship
impact caregiving will have on us. We at some point feel overwhelmed by the
tasks. "Lessons from the Ancients" is written to educate, entertain, and
inspire those anticipating future caregiving and those in the midst of it.
The book is part manual, part illustrating stories, and part worksheets to
help anyone who finds themselves in this rewarding time of life.

Section 1: A glossary of caregiving terms and lists of resources, services
available, and websites in the US.   Also includes financial, legal, medical
and relationship issues.

Section 2. A collection of experiences from family and friends that offer
insight, humor, and inspiration to caregivers. Also includes a list of tools
useful to caregivers.

Section 3. Worksheets to help the caregiver keep assistance, financial,
legal, medial, and service information organized.

but there are a few people in there still.

Thanks to Liz, Matt, Kayleigh, Terri, Lauren, and Debbie for their attendance today.

Wishing everyone the best weekend possible,

Sue & Kelly

but there are still quite a few people in the room at present.

Thanks to Matt, Kayleigh, Cas, Teresa, Pam, Susan, Suki, Lauren, and Mary for your attendance today, and for the support and understanding we offer each other - it is very much appreciated.

Love & hugs to all and all your loved ones,

Sue & Kelly

sorry! It is my niece's birthday this weekend and she's also learned today that her offer on a house she's fallen in love with has been accepted so I'm joining her and others to celebrate the two events. I hope to be available for Monday's chat and wish everyone the best weekend possible in the interim.

Love and hugs,

Sue

It won't be surprising for some HD families to read about the February 2009
FDA's black box label requirement for Metoclopramide [Reglan] drugs because
of the potential of Tardive Dyskinesia in long term use. If you read the
drug's info, three of the conditions listed for people who shouldn't take
Reglan are those with a: history of depression, Parkinson's disease or a
movement disorder and epilepsy or other seizure disorders.  Yet this drug is
prescribed by physicians for HD patients who experience stomach problems
[GERD], projectile vomiting, the healing of esophageal ulcers, intractable
hiccups, etc.

Many HD patients who have been prescribed Reglan have experienced not only
symptoms of NMS and/or TD but hallucinations, paranoia, suicidal thoughts,
severe anger outbursts etc..  Because of this, every time I hear of someone
being prescribed Reglan I send them to the information on the link below the
news article.

Metoclopramide brand names: Octamide, Maxolon, Metoclopramide Oral Solution,
Reglan including Reglan Tablets, Reglan Oral Disintegrating Tablets, and
Reglan Injection

FDA Requires Boxed Warning For Metoclopramide Drugs - Thu Feb 26, 2009
http://www.reuters.com/article/companyNews/idUSN2629346520090226 and others

Excepts only: WASHINGTON -(Dow Jones)- The U.S. Food and Drug Administration
said Thursday it was requiring manufacturers of metoclopramide, a drug used
to treat gastrointestinal disorders, to add a boxed warning to their drug
labels about the risk of developing a neurological disorder. Manufacturers
will be required to implement a risk evaluation and mitigation strategy, or
REMS, to ensure patients are provided with a medication guide that discusses
this risk.

Recently published analyses suggest that metoclopramide is the most common
cause of drug-induced movement disorders. Another analysis of study data by
the FDA showed that about 20 percent of patients in that study who used
metoclopramide took it for longer than three months. The FDA said
development of tardive dyskinsia "is directly related to the length of time
a patient is taking metoclopramide and the number of doses taken."  The FDA
recommended that treatment not exceed three months because the risk of the
movement disorder was "directly related to the length of time a patient is
taking metoclopramide and the number of doses taken." "The chronic use of
metoclopramide therapy should be avoided in all but rare cases where the
benefit is believed to outweigh the risk," said Janet Woodcock, the director
of FDA's Center for Drug Evaluation and Research.
--------------------------------------------------------------------------------\
---------------
Reglan (metoclopramide) Pharmacology, Warnings, Side Effects
http://www.nationmaster.com/encyclopedia/Reglan

Reglan may cause intense restlessness with associated symptoms such as
anxiety, agitation, foot-tapping, pacing, inability to sit still,
jitteriness, and insomnia.

Acute dystonic reactions (extrapyramidal symptoms (SPS)) have been reported
to occur more frequently in pediatric, and adult patients younger than 30
years of age, as early as 24 to 48 hours after initiation of treatment with
metoclopramide.

Psychiatric side effects have included depression, anxiety, mania, and
insomnia. Depression may occur in patients without prior history of
depression or other psychiatric illness and may be severe. Symptoms of
mental depression, including suicidal ideation and suicide, have been
reported with the use of metoclopramide. In patients with a prior history of
depression, metoclopramide should be used only if the expected benefits
outweigh the potential risks.

Genitourinary side effects have included urinary frequency, incontinence,
and urinary retention.

Neuroleptic malignant syndrome (NMS), a potentially fatal symptom complex,
has been reported with the use of metoclopramide. The clinical
manifestations of NMS include altered consciousness, diaphoresis, cardiac
arrhythmias, hyperthermia, irregular pulse or blood pressure, muscle
rigidity, and tachycardia.

Tardive dyskinesia, a syndrome characterized by potentially irreversible,
involuntary, dyskinetic movements, may develop in patients treated with
metoclopramide. The syndrome can develop after brief treatment periods at
low doses.

but there are still a few people in there at present.

It was a busy chat with Susan, Teresa, Hugh, Cas, Deborah, Matt, Kelly, Heather, Jen, and Gary attending and sharing information and support.

Love and hugs to all,

Sue & Kelly

At first I thought it was ironic to see an Illinois doctor intereviewed by a
Texas newspaper, but then I found the February 25, 2009 Ivanhoe newsrelease
in MSWord for printing and sharing:
http://www.nbc-2.com/health/Ivanhoe/2949%20Putting%20Huntington's%20Patients%20i\
n%20Control%20-%20Dr.%20Shannon.doc

You can also watch the 1:47 minute video: Putting Huntington's Patients in
Control
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=20660

NEW DRUG TREATS CRIPPLING SYMPTOM OF HUNTINGTON'S DISEASE
http://www.news8austin.com/content/headlines/?ArID=233004&SecID=2
News8Austin 2/24/2009 7:00 AM By: Ivanhoe Broadcast News Service

Excerpts only - see link for full article

PUTTING PATIENTS BACK IN CONTROL:
As Huntington's disease progresses, many suffer from chorea, or jerky,
involuntary movements throughout the body. Tetrabenazine (Xenazine) is the
first drug approved by the FDA to treat chorea in HD patients. It works by
decreasing the amount of dopamine in the brain. Dopamine is a
neurotransmitter that allows certain nerve cells to communicate. In people
who have HD, dopamine is overactive, resulting in the abnormal movements. By
decreasing dopamine, the movements are thereby also decreased.

Kathleen Shannon, M.D., a neurologist at Rush University Medical Center in
Chicago, Ill., discusses a new drug to treat chorea, one of the most
crippling symptoms of Huntington's disease.

Dr. Shannon: Huntington's disease is a hereditary disease that affects every
generation of a family. There are three types of symptoms. There is a
movement problem -- difficulty making movements and then movements are
contaminated by extra or involuntary movements and that includes walking,
balance, etc. It progresses and becomes very disabling. The second part is a
behavioral problem, and by that I mean depression, irritability, anxiety,
sometimes difficulty controlling the temper. Then the third part is a
cognitive disorder, which is trouble with planning, organizing, thinking,
memory, ultimately resulting in a person who really can't do anything for
themselves physically or mentally.

How does having chorea affect a person's quality of life?

Dr. Shannon: One interesting thing about chorea is many patients with chorea
don't recognize they have it. I have one articulate patient who says that
even when she looks at herself in the mirror, she doesn't see it. She can
see it when she watches herself on video, but she doesn't see it when she
looks at herself in the mirror, and she doesn't feel it; but it does
interfere with movement in some patients when it's severe, and patients who
know they having chorea -- not that the feeling it, but know that they have
it -- may limit their activities. They may not go to a restaurant or to a
movie, so in that sense it does decrease quality of life. It makes it harder
to feed yourself and do those kinds of activities.

Prior to the drug tetrabenazine (Xenazine), what was done to treat chorea?

Dr. Shannon: There were no FDA approved treatments. There are medicines that
people had kind of tried over the years and with some success. Medicines
were often used to treat schizophrenia would be useful to control chorea.
There is an anti-Parkinson's drug called Amantadine that sometimes helps
control chorea, so it's been kind of a trial and error way of managing the
symptom.

What is different about Xenazine?

Dr. Shannon: Tetrabenazine is more potent at controlling the chorea.
Virtually everyone with significant Chorea will have a response, whereas
with other drugs that we've used in the past, not everyone responds, and the
response isn't always as complete. So the tetrabenazine is a much more
effective treatment for severe chorea.

How does it work?

Dr. Shannon: Chorea in Huntington's disease is related to an increased
sensitivity of the brain to the chemical dopamine, which is a you know,
brain cells use chemicals to communicate. The traditional medicines block
dopamine's effects in the nervous system. Xenazine depletes the nervous
system of dopamine, so instead of the dopamine being released and being
blocked, it's actually depleted so it can't be released, and for some reason
that's more effective than simply blocking the dopamine.

Are there any side effects of depleting dopamine completely?

Dr. Shannon: Yes. Powerful medicines have powerful side effects. This is not
for sissies, this drug. It can cause significant depression. It causes
people to feel slowed down or sluggish. It can cause people to be sleepy, so
it can be difficult to use. The trick for using the drug is to start it at a
really teeny tiny dose and increase it very gradually and keep in pretty
constant contact with the patients to make sure everythings going okay.

Is this the kind of drug that you kind of have to evaluate on a patient to
patient basis; you want to make sure that the benefits outweigh the risks?

Dr. Shannon: Exactly. You can't tell ahead of time so much. if a person has
a history of depression, that might not be a very good person to try on
tetrabenazine, but you can't always predict, so that's why you need to
really have a system for the patient being able to phone and talk to someone
and report how they're feeling so that the dose can be adjusted. In between
visits to the office, for example, you need to keep in really close contact
with patients.

What do the results from the clinical trial show in terms of how effective
the drug is?

Dr. Shannon: It was significantly effective; really substantial improvements
in the presence of chorea and how severe it was when it happened; but it did
have side effects. There was a suicide in the study in a person that wasn't
thought to be suicidal, and there was depression in the study and
sleepiness, so again, it's a really powerful drug with powerful side
effects.

Even though this drug isn't a cure for Huntington's disease, why is this
drug so important for people suffering from it?

Dr. Shannon: It's important for people to understand that the Huntington's
disease has many, many symptoms and chorea is the only one. This treatment
actually doesn't improve anything except chorea, and in fact, in the study,
some things were a little bit worse. The functional state, how well people
were able to care for themselves was a little bit worse, and thinking and
memory was a little bit worse, and mood was a little bit worse, and so that
speaks for making certain that you evaluate the risk to benefit ratio
individually in each patient. People with Huntington's disease are very
anxious for any new treatment, particularly if it's something that would be
a cure for the disease. This is not a cure. It simply covers up one of the
symptoms of the disease, but when you have an incurable disease, anything
that improves your quality of life is a welcome addition to the
pharmaceutical armamentarium, so anything that makes people able to go to a
movie or to go out to a restaurant with their children is an important thing
for them.

Patients with Huntington's disease have the verbal and motor skills changes,
but do they mentally still understand everything that's going on around them
and understand their condition?

Dr. Shannon: It can be hard to know how much people understand because
people with Huntington's have trouble expressing their feelings. They have
trouble coming up with the right words. They do lose cognitive function
progressively from early on in the disease. They lose the ability to express
their feelings, to plan things, to organize things, to multi-task and so it
can be difficult to know how intact they are, but unlike something like
Alzheimer's disease, their memory and other aspects of thinking are
preserved for a relatively long time. They don't lose memory function until
relatively late in the disease. It's mainly really high level thinking.

What's on the horizon for Huntington's disease?

Dr. Shannon: There's a lot of interest in Huntington's disease, because we
have the gene. You can put the gene in animals and get a good model of the
illness. It's fairly easy and quick to test treatments, so there are a
number of things that have been identified in animal studies that look like
they'd be easily tolerated in people, and that would be easy to give to
people, and might potentially slow down the degeneration of the disease and
therefore slow down the progressive worsening our patients have. We're
currently enrolling research subjects into a large study of co-enzyme
COQ-10, which is a health food supplement that is showing some preliminary
evidence that it might be useful. There's interest in high doses of
creatine, which is another health food supplement. This is an orphan disease
and because it's an orphan disease, there are not a lot of drug companies
lining up to invent new treatments for Huntington's disease, so to have even
two clinical trials like this is really exciting for us, and really exciting
for our patients -- new things that we hope might slow disease progression.

----- Original Message -----

From: Scott

To: huntingtonsdiseasesupportclub@yahoogroups.com

Sent: Monday, February 23, 2009 2:44 PM

Subject: Re: [Huntingtons Disease Support Club] Message from Deborah

Hello Fuzz!  Sorry about your hub.  I'm 45 @risk male.

 

A few questions and some words of wisdom:

 

He's gene positive, obviously, but is he showing symptoms?

 

If not what motivated him to test?

 

What questions do you have? 

 

What do you perceive to be the drastic change?

 

Now wisdom from a dope:  Your life has changed, but if he is not symptomatic nothing really has.  The information gained in testing provides you with a unique opportunity to play and plan for the present as well as the future.  Love him as if he'll be gone tomorrow...shouldn't that be the case regardless? 

 

Welcome !

 

Scott, aka dope-in-residence

---

From: fuzz2698 <drhops@avci.net>
To: huntingtonsdiseasesupportclub@yahoogroups.com
Sent: Monday, February 16, 2009 2:30:16 PM
Subject: [Huntingtons Disease Support Club] Message from Deborah

My husband's positive results for HD are still quite new and so I'm
here to listen and get information, any and all is appreciated.