My husband was diagnosed with CBD in 2011. He died 4/8/14. His first true symptoms were Gran Mal Seizures 12/31/09. Why so little time?

My husband had been followed for a couple of years following migraine headaches by a neurologist. In 2009 that neurologist turned him over to his partner who was the disorder specialist - so all the time he really had from first symptoms to death was approximately 5 to 6 years. But from the time of his diagnosis of CBD to death it was only 3 years. Why so little time?

4 Replies

  • These diseases are unpredictable patient to patient. Some die from falls others aspiration pneumonia. Some live as long as 11 years others short time. I personally measure from first symptoms not diagnosis. My wife started with balance issues. Year later diagnosis Parkinson's then finally PSP. These diseases, as I've said many times, are not a one-size-fits-all. Sorry for your loss. These are awful, awful diseases. They take, take, take, from patient and caregiver and family.

  • Hi dragonladynaps, I was told about 7/10 years was the likely time between diagnosis and death and was planning on that basis. My wife had only two years. It all depends, I guess, how early in the disease the diagnosis is made. Unfortunately there is no definitive test to identify CBD/PSP in the living. Many of the earlier symptoms could have a variety of causes, added to which many GP's have no knowledge of CBD/PSP and are not therefore looking for it. It may be an explanation but it's no consolation when you lose your loved one long before you are prepared for it. I hope you have lots of support from friends and family, my kindest regards, Jerry.

  • Thinking of you in my prayers xx

  • thank you all for your replies. It makes me feel better to know I am not alone.

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