CADASIL Family Forum (since 2007)
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 #1 
Thank you Stacey.  This is what I try to do.  Live my life to the fullest despite my symptoms.  I have two teenagers and a husband that I want to enjoy life.  I do not want to bring them down.  I want to create good memories for them. I take each day as it comes.
 
Cindy 44

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Billie Duncan-Smith
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 #2 

I would like to say thank you for positive, and uplifting words, of
both
support and encouragement to the forum.


Sincerely,

Bridget
(mother: Sue 60)


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Billie Duncan-Smith
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 #3 
Ryan, when I was first diagnosed in 1996 at age 42 I was in shock and denial and became depressed.  I had two teenage children and a very busy and fulfilling life.  I was flat scared.  My mother died of Cadasil 2 years later.  I mourned even though I fought not to.  Then the days came that I decided that I could live my life to the fullest.  I could get hit by a bus tomorrow or experience some other calamity.  I took severe measures to reduce stress and increase joy.  The hardest times now are weddings, especially during the father daughter dance.  I usually cry like a baby. 
The only thing any of us can do is our best.  I have a wonderful and strong wife, good friends and my faith.  All of these are great comfort.  I know the days are coming when I will be more symptomatic and taxing to my care giver I hope we can prepare for her to seek a support system and help.
I hope your wife can adjust and adapt.
 
Kurt Shonka-53

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Billie Duncan-Smith
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 #4 
Thank you Shirley, it is so good to hear some positive things. Life is very scary right now for the younger ones here on this discussion, and to hear things like that gives great hope. My mother-in-law has cadasil (61) and pritty much lives life in her armchair. My father-in-law is fantastic and has the patience of a saint with her, but I do hope that when my husband becomes ill I will have strength like yours to try and live a 'normal' life. My mother-in-law seems to recognise us all now, but doesn't always know our names.
My heart goes out to all of you care givers and it is wonderful that you have a forum like this to offer and gain support. I live in the UK, and there is so little help here. My eyes are being opened to all the medication available. We are sent away with advice to get aspirin in and that's all.
Anyway, just wanted to thank you for your encouragement..... as a younger member of this forum with all this ahead of me, I guess that is what I look at you all for.
Charlie (Nick 34).

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Billie Duncan-Smith
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 #5 

My name is Shirley and I have just joined this forum and recently sent my first few messages.  Bob is now 58 with CADASIL.  To those that are much younger than us and are facing this disease, I feel for the many thoughts you must be having and the uncertainty life always hands us.  A nurse practitioner  that we see regularly, once told me after I had met my brother and his wife for a week-end of camping,(fall of 2005)  that I was trying to lead a normal life.  And I guess that is what I  have done over the years, we have gone to concerts, hometown theatre. movies, camping, and vacations, sometimes it has been a little extra effort and work BUT it is worth it.  There is so much you can do and enjoy.  Make the very best out of the moment.  I have also over the years tried to give him his independence as in dressing himself, even though many times now he requires some instruction, but sometimes not.
my best regard to all of you.    Shirley  (BOB 58)

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Billie Duncan-Smith
daysie

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 #6 
Hi, this is my first post. My father and my sister have cadasil, and I have the early symptoms. I have the temporal lobe seizures, I believe is what they are called.  I'm only 2 and not really wanting to get tested quite yet, however I would like to know it I have the big "C". My plan of attack is this: Almost 5 years ago I had an MRI that came out clean, I want to have another MRI to compare with the last one. If there are bad changes then I might get tested.

The one thing that I have found that helps with my episodes is a protein powder that I take every day that has argine in it. I truly feel that this helps in preventing the seizures.

It's intersecting because I have the same symptoms as my older sister and mine started the same age that her's did. So I'm 95% sure that I have the "BIG C". I feel really helpless, and that there really is no where to turn to get help.


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christy
twinmom

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 #7 
This is the first time I have ever written, I am 33 and have cadasil my brother also had cadasil.  He just died on December 24, 2009.  He was very sick but he always tried to keep a good attitude.  He had high blood pressure and diabetes since he was a teenager, also he had MS, too, he had gotten to where he was having troube walking.
Doctors are pretty sure the cadasil came from my father, he has had 2 strokes.  I feel so alone like I lost a huge part of my life. 

julia

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 #8 

Hello i have just discovered this website and can really relate to what is being written here by you all.  I live in the Uk and my mother was diagnosed with CADASIL five years ago.  She is now 66 and it is heartbreaking to see how she has deteriorated.  She is now wheel chair bound and incontinent.  She is very confused and struggles to maintain a conversation.  The sad thing is she knows this and it scares her.  It is simply torture for her.  I don't know if myself or my brother have CADASIL too and I dont feel ready to be tested.  I feel it wont change anything as their is no support here medically or emotionally.  I think if there is enough support here in the on we could set up a meeting too just like the one taking place in the states at the end of JUly.  I know mum and I would love to share our feelings and concerns with other people who really know what we are going through.  We do try and remain positive and mum really tries to be happy but she finds it hard.   

Aaron

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 #9 
Hi, My name is Aaron. Like Julia I just discovered this website. My Mum got diagnosed with CADASIL in 1998, she was aged 48. At the time doctors told us only 4 people had it in the world.
Doctors first thought she had epilepsy, so they did some tests. First test was an angiogram, then they did a biopsy an she went into a coma for 9 days. Doctors said to my dad get your 2 sons in because she's not gonna make it. Mum woke from the coma on the 9th day. Doctors couldn't believe it. Mum came home a few days later.
Mum took awhile to get stable, but a few months she was having mini strokes an her health started getting worse. At time I was 18 my brother was 17. Doctors said we could get tested because it was hereditary. Mine came back negative. But doctors told us one of us would have it. Months later my brother finally had the test, it came back negative. Great news.

About 2 years went by, an the 3 of were looking after to mum, but it was getting very hard for us. So in 2003 the decision came to put mum into full time care.

Now 2010, she has had about 20 strokes an her doctors can't believe the fight on her. She has been wheelchair bound for about 4-5 years, lost nearly all communication, short term mermory like what she had for lunch. She still has her long term mermory so that;s good.

But this week my brother got a phone call from the clinic where she is. They said that mum had gone down hill rapidly this week an has lost all functions to swallow her food an speech. Dad was currently in Canada. Doctors think her long fight over the 10 years is coming to end. It's sad to say but I hope journey is nearly over as well, because I have seen my beautiful mum suffer for way too long.

I have found it very hard to see her suffer. I have hardly ever spoken about this, I'm glad I've found website tonight. I just wish I found it 10 years ago. It has been so frustrating that there's medication for CADASIL. Doctors aren't sure but they think Cadasil came from her father.


Aaron (Perth)

benz4matik

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 #10 
Im 30 years old and just found out I have Cadasil a month ago. My mom is 56 and has it. I find myself so much more emotional and crying at bedtime alot. I feel so bad for my significant other who will most likely live without the support of me later on in life. Do others share my feelings?

Before I had been diagnosed (my mom was diagnosed 3 months ago), I found myself riddled with anxiety and depression, starting in my late 20's. I hope on not on the fast track. Im currently on anti-anxiety meds (Klonopin) and an antidepressent (wellbutrin). But nothing seems to help.

 I wanted to become a member because I feel so alone. My mom is still somewhat in denial about it, so we dont talk. All my doctors never really heard of it. My neurologist, upon finding out my diagnosis says to me "whats your plan?". Gee that helps. He basically just said hopefully there will be medical advancements in the next 30 years. Thanks for the generic of all generic answers.

When you guys were diagnosed (or a loved one), how did you deal? I hate feeling so depressed. My GF (future wife?) has been very positive and says she will be there for me every step of the way. I love her for that.

Andy

Beth

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 #11 

I was disagnosed with CADASIL 2 years ago at the age of 45.  My dad was already in a nursing home with what we believed to be strokes and alzheimers.  After I was diagnosed we also had him tested.  Of course he also tested positive.  So after so many years we knew why he was going through what he was.  It's really scarey to watch a loved one go through that and then to find out that you have the same thing.  I find myself dreading what my life will become, then I remind myself that I still have a life to live and I need to live it while I can.  My dad passed away about a year ago at the age of 71.  I have to remind myself so often that anything could happen to anyone at any time and we just have to live like it was our last day.  Try not to dwell on what will happen in the future and make every day count. 

fantasylandfan

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 #12 
First time in this room.  I'm 39 and was diagnosed at age 30.  I've been battling depression for a long time, but feel it is not helping anything feeling sorry for myself.  Keeping a positive outlook helps.  Not easy right now, my father has the disease as well and has been in a nursing home and now is hardly eating.  It is scary looking at my possible future.  We need a cure !!!
enrico

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 #13 
dear fantasylandfan,

i'm 30 year old and in april 2010 doctors discover that i've got cadasil.
at the momnet i'm very very deprest becouse it change a lot of things in my life, expecially my work .
i'm taking an antidepressive (welbutrin ) just to help me to pass this black moment but can i do in the future? i'm afraid to do evrything.
what could you sugggest me ? help me please i feel alone ....
bye bye and thank you for your help .

Enrico Berto

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enrico berto
borellvip

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 #14 
HELP!!!! I would like to know if anyone gets vertigo? I have been experianceing vertigo for over a week now and at this same time last year,2009, I vertigo for about 6 weeks. saw a ENT and had every test possible and a MRI. All the treatments possible too. Did not find anything wrong. If anyone also gets vertigo,please let me know if you have found out how to deal with it and how often it happens. I'm getting desperate.

Thank you,
Anne
NORWAINI

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 #15 

hi anne,i was diagnosed with cadasil in 2009;am on flunarizine;glyprin and simvastatin...am now experiencing vertigo,have been for a week;feeling like a yoyo...since i have to wait a week to see a neurologist,i went to a gp;gave me a jab for the dizziness and advised me to go to the hospital if it persists...do you have/experience pain in the inner ear?I dont know if this vertigo is going to linger around for another week...

jules

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 #16 
I haven't used this forum for a few years and thought that I would now have another look and see if anything has progressed.  It is my husband Nick who has CADASIL and is now very unwell indeed.  He was diagnosed about 8 years ago.  He is now unable to walk, talk (save a few whispers)  and actually doesn't understand a lot of what is happening around him now.  So so sad.  He is doubly incontinent (has been for a long time now) and has to be hoisted from his wheelchair to bed each morning and then back in the evening.  I am lucky as I  have carers morning and night 365 days a year, but without them I could no longer manage.  I still love my husband like mad, and I think still loves me!  

I just wonder if there are others like me, where things are pretty bad and I dread the next stage.  His swallowing isn't good and that in the end will be his downfall as he has signed something stating that he does not want to be peg fed.  So understandably I am not looking forward to the day he really can't swallow at all as that will be the end.  Does anyone else have this looming over them?

On the other hand, we are reasonably happy in that we have an excellent family, lots of friends and we socialise a lot.  Nick comes everywhere with me (in a wheelchair adapted car) and we sort of manage.  Luckily he is not a heavy man as I am quite small too otherwise I  wouldn't manage as I do!  We also have a fabulous medical team and have masses of support in a way.  

It is not easy, however, and we don't know anyone at all with a similar problem.  That is why I though it good to join this.  

It would be nice to hear from someone!  Juliet Horgan (England)

Byds

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 #17 
I thank you for your thoughts and I know I live in each day on what I am loosing in your husband.

Take care
Billie

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escargo

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 #18 
Im about to be tested for Cadasil, yep Im way stressed. My mother is 57yo and is in the final stages,I have known about the Catasil for 3 years now but dismissed it from my mind.seeing her so helpless was heartbreaking. So I decided to get tested so I can change my lifestyle before its too late.
just wondering what might help ie;
Stress?
Weight?
Smoking?
Asprin?
Diet?
The Pill?
I am 37yo with a 5yo daughter
Australia
borellvip

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 #19 

I have regularly been getting vertigo. Once a month for about a week. Does this happen to anyone else? Has your neurologist told you that vertigo is also a symptom of cadasil? This has been happening to me for about 2 or so years. Please share with me........

Thanks,
Anne
fantasylandfan

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 #20 
Borellvip, In response to the vertigo. I have those issues mostly in the dark or when I close my eyes.  I don't think it is CADASIL related as much as the area that you have the brain damaged from the disease.  Most of my damage is in both frontal lobes. But I have other areas as well.
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