My husband is 41 years old. He was diagnosed with CADASIL 1 year ago,since then I have watched him go down hill so fast. He does not get migraines never has, he just has severe confusion, staring episodes and acts like a 4 year old, he lost his job because he cant remember anything. He really doesnt believe there is anything wrong with him he doesnt see it. I have become his mother constantly watching over him he can barely do anything for himself . He still walks and drives and has no real muscle weakness he just acts and looks like a mentally retarded person. I am so scared for him and our children. His mom passed away in Oct in my care at the age of 61. She was diagnosed with CADASIL when she was 57. Has any one heard of these symtoms???
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My Husband
8 replies
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- By glider04
- Posted April 1, 2009 at 10:04 am
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http://en.wikipedia.org/wiki/CADASIL
Just a place for more information, finding a doctor that understands the disease is next.
God Speed
- By glider04
- Posted April 1, 2009 at 10:52 am
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Know that what is happening to him is not of his choosing and not being able to understand what is happening to him could be part of the disease itself.
From first glance, it would appear that there are different types of treatment for it, just that it takes time to verify what works for him.
Enjoy the good days more than you can remember the bad ones.
- By sue9267
- Posted April 1, 2009 at 10:58 am
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Thanks for the advice I do try very hard to understand him it is just so frustrating. He has a good neurologist that we are working with its just they cant do anything for him. We tried some meds and he got violent with them. I am hopeful someday they will find out more about this disease and hopefully a cure. my mother inlaw donated her brain when she passed away to a research hospital, I pray everyday someone will find someting.
- By DMBM
- Posted April 8, 2009 at 12:04 am
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I'm sorry to be brutal but he must not drive. Even momentary loss of concentration can be lethal and if he has CADASIL he has a very high risk of stroke . If you don't think you can handle the angry response this will inevitably cause, let his doctor know,he is required to report all illnesses which impair driving to DMV.
I do understand the frustration of losing so many aspects of independence, depending on the setting I am angry or embarrassed or just plain fed-up with asking people to bear with me while I take a deep breath and try again. Among the things my spells of confusion - believed to be CADASIL, result in walking into traffic; walking round and round racks of clothes muttering "where did I see that before?" which makes the security staff very nervous; getting lost in my own house - problematic if it's the bathroom I've misplaced, falling up or down stairs, or just falling over for no particular reason, I sort of step out into space and can't adjust.
Knowing that my family and friends are praying and sticking it out with me no matter what comes means a great deal more than I ever thought it would. Like you I do fear for my sons and am going to be vague about the genetics and the actual diagnosis, at least until they are all through college.
Denise
- By michael178
- Posted April 13, 2009 at 1:24 pm
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I used to think that it would not be so bad to be the village idiot, but that was before I became one. The trouble was, unlike your husband, I knew it. I knew I should not drive, and agreed when my wife and son refused to let me drive any more. I woke up each morning in a dense mental fog that never went away. Fortunately, me son, who is bipolar, had some unused ADD drugs (he had been dx'd with ADD also), and I tried some Stratera which cleared up the brain fog. After that I went to a psychiatrist who was known to work with the elderly, and he now deals with my dementia problems.
My neurologist did not seem interested in my dementia symptoms. In fact, he does not seem much interested in my problems...other than to tell me that I do not have Cadasil disease. The problem is that my brother and I both sent our mri's and medical reports to NIH and they called back and said we had Cadasil...so who am I suppose to believe: A neurologist who has never seen Cadasil before or a NIH research team that was set up to Dx people with unknown leukodystrophies.
But enough about me. Dementia is really difficult, and very frustrating especially when you know you have it. Every day was confusing. the things I could normally do were now impossible to do. I could no longer cook meals because I could not remember how to, and I left the stove on and the oven on, and it got too dangerous. I could not find anything, nor remember anything, even for as long as a few seconds. I could not follow conversations at all, and stores were very confusing to me especially the ones that I had previously been familiar with. I just wanted to avoid everything and everyone; and not have to explain my mental state to anyone anymore. It was just too embarrassing.
- By warriorsgirl
- Posted June 18, 2009 at 12:30 pm
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My husband is 37 and was just diagnosed with Cadasil earlier this year. Since 12/08 he has had 3 TIA's and 2 actual strokes. His memory is awful, very short temper, depressed, right hand weakness, etc. He is trying to quit smoking since he knows how bad it is. His migraines are sometime really debilitating. He can't work, applied for SS Disability, no answer yet. I love him so much and am so scared. I don't even know how to help him deal with the whole situation. Any suggestions? I also have suffered from migraines most of my life, and my father was diagnosed with Alzheimer's in his 50's, I sometimes wonder if he really had Cadasil, do I possibly have it too? I would greatly appreciate any help from anyone that has been dealing with this illness to help us understand what to expect, how to help. Thanks, Kim
- By sue9267
- Posted June 22, 2009 at 3:50 pm
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Oh my gosh I feel your pain, my husband has never got headaches but the memory loss is unbelievable. I am so scared to.Watching him fade away is killing me. He takes off in his truck and doesnt no where is going and I cant take his keys because of his temper. I dont want to set him off. I am so scared when I am working he smokes in my house and we have never smoked in the house ever. The sad thing is there is no help only sedating psych drugs I went through this with his mom its awful. I refuse to give him psych meds they make them worse. Take care and keep praying thats all I do
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