Dear Grace, I got up early this morning and read your story in my LBD daily mail

Judith Screaton

Submitted on 2009/06/10 at 6:10am

Dear Grace,

I got up early this morning and read your story in my LBD daily mail. I am amazed at the many similarities to my husband’s LBD story.

My husband Ross was diagnosed with LBD in January 2009, yet we’d struggled for several years with doctors who told us that he was simply recovering from an aortic dissection suffered in 2004. In December 2007 a neurologist diagnosed him as having Parkinson’s, and began treating him with sinemet. That started the hallucinations, the shakiness and more pronounced memory loss, yet ending the sinemet didn’t reverse the conditions.

Finally we went to a geriatrician, and he explained LBD to us, and is helping us deal with the disease. It’s been over 5 months since the diagnosis, and we have learned so much, but clearly not nearly enough. Ironically, we live in Minnesota about 100 miles from the Mayo Clinic. We considered going there, but my husband was never in good enough physical or mental condition to travel that far.

It must be very difficult to write about what you went through, but it really is very helpful to me. Personal stories are so much more meaningful than clinical facts. ,

Thank you, thank you, thank you. Judy Screaton


3 Responses

  1. It shows the importance – and the blessing, of sharing. David’s probably done infinitely more good with his blog than he realises.


  2. I agree 100% with Louise.

  3. Me too! The impact of learning the facts from the point of view of the patient himself is enormous, even greater in David’s case because he is patient and doctor.
    I also agree that the caregivers comments are much more helpful than all the brief and haste information doctors give us. To be part of the LBD group did save my sanity!
    Thank you, David, for this blog.
    Hugs from Uruguay,

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