The huntignton disease,a terminal disease my mothers disease

[philippe]

My mom has the Huntignton disease.
Its a disease that slowly destroy your brains...
i can get it through the genes.(i got 50%procent of having it)
its a terrifying disease ,a slowly disease...
Since you are all complete strangers and you never see me in daily life i am not embarresed to tell you about it.
My mom is now sick for 2 years

And i can notice it...
She has big problems walking(she looks like a drunk but she never drinks but the poeple think she is)
Cannot talk good.
She also has motoric problems(cant move her arms good)
and have trouble balancing.
My mom is now 57she has only 15 years to live yet.
(it kills you after 18 years)all my aunts have it, my grandfather had it) and im probably the next in line...
the disease appaers around the age 35-55 but there is also a teenage mutation that strikes around the age of 12.
So im sure i dont have that
but the elder mutation....
ive seen my aunts after 10 yaers disease not been able to move talk or eat and the emotions can get damaged too...
(my mom could suddenly become very agressive without wanting it...)
But i will always stick to her.Always.To the death.
She is taking pills to slow it down but it doesnt works.
Now i even more hate the pharmuetisists.
Those pillmakers are researching for erection problems but not for such horrifying disease
More information about the huntignton disease:
http://www.hdsa.org/edu/AskADoctor.pl?show=10
http://www.hdac.org/
http://www.kumc.edu/hospital/huntingtons/
i want to end this by saying: I MY MOM!

 

[Yoda Power]

Im sorry for both you, your mom and rest of your family. It really sounds as an awfull disease.

 

[nixon]

Sorry to hear that, Philippe. I think that perhaps you may not want to know, whether you have inherited the abnormal chromosome, because there exists no cure for the disease at the time being. The diseases relating to the brain are often very painful for both the person, but also to the next of kin.

It's very good that you love your mom; because during the various stages of the disease, her behavior, physically and psychologically will alter dramatically. Some are driven into suicide, so it's very important having someone next to you.

Best of luck to you, your family, and your mom.

 

[philippe]

Thank you Nixon.
She has been thinking a lot about suicide and i always stopped her doing it becuase i want to share more good moments just like in the old times...the old happy times...
I started to smoke becomes i cannot handle the pressure anymore.I hope that any of my sisters will not get sick...
I dont care about myself.
Im willing to quit school just for her.
Im willing to do anything for her.anything becuase thats what switch told me:"love is the thing that helps you stick toghether in good and in bad times."
I cannot let the one who gave me birth be abandond.

 

[philippe]

I hope that nobody in the world has to experience this disease.
Its so hard to see the one you love slowly fade out....

 

[Richard III]

Originally posted by philippe
Since you are all complete strangers and you never see me in daily life i am not embarresed to tell you about it.

You should not be embarrassed even if we were all there. We don't pick our genes or our diseases. You can be sure drug makers would produce a drug if there was something they could treat with it, but unfortunately for the victims of diseases like this,
medicine is still an art, not a science. People are working madly on finding things to treat, and with some diseases - particularly genetic ones - they are working from scratch.

But don't lose hope. As I wrote elsewhere on this thread today, I've got an incurable kidney disease which almost killed me five years ago. Back then, it was, "hey, we have blood pressure drugs to try and reduce risk, otherwise, wait to die and hope for a transplant." Now, I'm on drugs that have slowed the damage, owing to things they've learned from research on completely different diseases. And they are a few years away from literally being able to grow kidneys in humans (they've done it in mice).

So, good luck with this. Sadly, the disease might shorten your mother's life, but there is no reason it has to make it empty. Stick it out, things can work.

!

R.III

 

[Jeratain]

Originally posted by philippe
I hope that nobody in the world has to experience this disease.

And I am very sorry to hear that you and your mother are experiencing this. I wish you both the best of luck in the days and years to come.

 

[MCdread]

That was one of the bravest and most sincere posts I ever saw here in CFC. I admire your determination and unconditional support to your mother and wish you the best in dealing with that disease.
There is that old saying "While there's life there's hope" and I wish that hope may turn into reality, both to your mother and especially for you as you haven't yet developped the disease.
My heart is with you philippe.

 

[philippe]

Thank you all for your deep support.
Now i know at least somebody outside my family cares...
The many times i saw those eyes of naughbours laughing at my mother becuase they didn't know what she has...
I am not ashamed on my mother becuase it looks like shes drunk and i will never be...
I am finnally so glad i could write my deepest feelings from my heart and that i now can less worry about my mom when im trying to sleep...
Becuase somebody cares.
I find it so great someone i never met,never known his real name or face could show support to me and my mom especially in this cold hard world we are living in...
i trust my faith into science and I find it great that poeple like my sister who work very hard to cure my mother disease...
But sometimes i realise the big bosses of multinationals only think about selling their medicines.
But still i have a great hope in it.
Becuase tomorrow is a new day and i will gladly share it with my mom on my side.While she is suffering my heart breaks becuase if you would get to know her you discover she is a great person...
She is never selfish, she is always ready to anything for me.
And i will gladly return the favor.From the outside i look here like a big spammer with full of joy but in the inside i am just a mothers sun who will do anything to help her.
I trust the future into genetic manipulation and in a better world where its full with poeple like you guys(and girls) caring for each other.
I thank you so much but my emotional pain is nothing compared what is happening to my mom,my precious mom;my everlasting mom...

 

[Pongui]

I'm sorry about your mother, your aunts, your grandfather. Your family has a cruel enemy. But your family will win someday, maybe after you are an old man but you will someday. Try not to sacrifice yourself too much, philippe, even for your mom. She needs to live through you. All her best qualities are in you now, even if you don't know it, and you have to help those qualities live in the world.

 

[philippe]

I did a bit research about the disease and it seems there are test to know if you got it or not.
Well i decided not to test myself becuase i dont wanna live in fear everyday.I wanna enjoy life not living in fear for when it breaks out.
or i dont have it and i would feel reliefed becuase i would then have kids without thinking if they could get it too....
so its a basic dilemma and i remember how mom was when she got the results...
She was tottally broken but i supported her...

 

[Scrimshaw]

Sorry to hear that phillipe. My dad actually has the same disease. He's had it for about 10-12 years. It's hard to pinpoint the exact onset so nobody is sure quite how long he's had it but around that long. He's on his last legs but keeps holding on. He can't walk or talk almost at all. Without medication he twitches violently. I can't say how many things he has broken over the last few years because he doens't have complete control of his limbs. He can't even eat by normal means because his arms and legs aren't the only muscles that convulse. His throat will convulse at the worst of times and choking is a common cause of death for people with this. My family doctor has given him a year to live for the last 3 years. Noone are quite sure how he's holding on. He's exceptionally lucky though. He got much later than most He's 73 now and lived a fairly full life.

What's tricky as hell about his case is that none of his relatives have it and he's one of 9 kids. His parents, siblings, aunts, uncles, nobody has it prior to him. My sister had herself checked and she does not have it, My brother and myself have not gone for testing and I personally don't plan to. I won't let something like that dictate my life and If I get it later I'll deal with it then, not now.

I just thought I'd add my two cents in here to let you know that you aren't alone with this. You, like me probably still have a long time so make the most of your life. Also make the most of what you and your family have togethor since that may not be as long.

What phillipe left out is that huntingtons disease itself(like AIDS) is actually not a fatal disease. It's much too cruel for that. People with it die from falling, choking, suicide, Pneumonia or some other actually unrelated old age problem(such as heart attacks) since it typically strikes the old and weakens it's victims making them more vunerable to other ailments.

 

[philippe]

Oh my god...
What a terrible disease...
I wouldnt like to see my mom choking.....
But you also know how hard it is.
And we are both hoping for a medicine...
Crimshaw I really understand your feelings becuase their the same as i...
The frustation to hear that one of your parents have it...
Its almost unbearable...
I give you all my support and i hope that you are going to have
many happy moments toghether...

 

[Zcylen]

c'mon! phillipe!
who knows, maybe science researches can find a cure for that in some few years, maybe still on time to save many lives, including your mom!
as long as you dont give up there's hope!

 

[philippe]

Yes but first scientists must have the money to seek a cure and because my moms disease is relatively unknown disease its not so likely they will find a cure in the next 5 years maybe in 10 years,i hope so

 

[Scrimshaw]

Originally posted by philippe
Yes but first scientists must have the money to seek a cure and because my moms disease is relatively unknown disease its not so likely they will find a cure in the next 5 years maybe in 10 years,i hope so

There are options undergoing trials or whatever that are promising.

The thing about huntingtons is that it causes protien to collect in clumps in the brain. A very specific type of protien is needed by various parts of the brain but it is instead forming 'protien balls' elsewhere so that part of the brain is starved and degenerates. That's how huntingtons causes brain degeneration.

There are many ideas that will either break up those balls or keep them from grabbing more protien so the disease won't progress. With these treatments the best we can hope for is either a pill(or many more, more likely) you'll have to keep taking for the rest of your life or some treatment you'll have to keep undergoing forever. You'd start taking these probably at the first onset of symptoms.

Not that I'm complaining. I handle undergoing treatment for the rest of my life. It's better then the alternative.

An actual complete cure will involve altering your genes and that won't happen for at least 20-30 years.

If anyone can correct or add to any of this, go ahead.

 

[cgannon64]

Woah, tell her we at CFC are with her. I doubt that will comfort her though . But seriously, I read an article about it in Scientific American.

Oh, and don't worry phillipe - not all pill makers are working on erectile dysfunction. Read the article in the most recent Scientific American - they are working on it.

don't worry about it...live life!

 

[polymath]

I am so sorry to hear that philippe...my aunt has something very similar...I know just how distressing it can be...I wish you all the strength to deal with it, you aren't alone.

 

[damunzy]

I am sad to hear about the difficulties you and you mother are going through philippe. You and your mother will be in my prayers.

 

[joespaniel]

Originally posted by philippe
i want to end this by saying: I MY MOM!

Thats a powerfull medicine right there.

Make sure you give her that medicine everyday.