moderator
Moderator
Registered: 08/26/07
Posts: 201
|
|
|
| #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 |
| |
moderator
Moderator
Registered: 08/26/07
Posts: 201
|
|
|
| #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)
|
| |
moderator
Moderator
Registered: 08/26/07
Posts: 201
|
|
|
| #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 |
| |
moderator
Moderator
Registered: 08/26/07
Posts: 201
|
|
|
| #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). |
| |
moderator
Moderator
Registered: 08/26/07
Posts: 201
|
|
|
| #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) |
| |
daysie
Registered: 05/23/08
Posts: 1
|
|
|
| #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.
__________________
christy |
| |
