Uh... Seriously?
Lyn and Mom met with the neurologist today. I wish I had been there. Then again, maybe it was a good thing I wasn't.
To sum up, Mom said, "Well, at least the doctor was nice." So, I asked her to start at the beginning. Here's what she told me:
The MRI was normal. There is no sign of Alzheimer's Disease. The EEG was also normal.
The neurologist doesn't believe in dementia at her age and thinks her memory loss is due to the stress and anxiety of her life. He wants to put her on anti-anxiety medication to prevent more memory loss from the anxiety and stress. Mom pointed out that Lyn's life is structured to minimize any anxiety and that she has no stress, no job, no significant responsibilities to stress her out.
He did not agree with the diagnosis of Sundowner's and said "that's not Sundowner's" with regards to her anxiety in the evenings. When asked what Sundowner's was, he never responded.
Mom had printed off the Dementia Symptoms post and highlighted the portion where I list Lyn's symptoms. She also handed him a list of the changes she's been documenting since April. He didn't read these. He just dropped them into the file.
I'm glad I read the presentation by Matthew Janicki in which he points out that diagnosis of dementia in the intellectually disabled is a challenge due to several factors including lack of understanding on the part of the physician. I think that was the case today. Mom says:
I could have been mad. I could have been discouraged. I decided "No. He doesn't know our
population."
So, if you're reading this and if you know a good neurologist who is familiar with the intellectually disabled, feel free to drop a note my way. We're on the hunt for someone who has a working understanding of our population.
To sum up, Mom said, "Well, at least the doctor was nice." So, I asked her to start at the beginning. Here's what she told me:
The MRI was normal. There is no sign of Alzheimer's Disease. The EEG was also normal.
The neurologist doesn't believe in dementia at her age and thinks her memory loss is due to the stress and anxiety of her life. He wants to put her on anti-anxiety medication to prevent more memory loss from the anxiety and stress. Mom pointed out that Lyn's life is structured to minimize any anxiety and that she has no stress, no job, no significant responsibilities to stress her out.
He did not agree with the diagnosis of Sundowner's and said "that's not Sundowner's" with regards to her anxiety in the evenings. When asked what Sundowner's was, he never responded.
Mom had printed off the Dementia Symptoms post and highlighted the portion where I list Lyn's symptoms. She also handed him a list of the changes she's been documenting since April. He didn't read these. He just dropped them into the file.
He believes that the incident on the Metro was "just behavioral." He recommends that Lyn and Mom meet with a psychiatrist to address her behavioral problems. To this we ask "What behavioral problems?" Even my husband asked that question when I summarized this for him.
The neurologist wants another EEG and more blood work. The EEG is because he believes Lyn's having deep seated seizures. His logic is that if she had them for two years, she's still having them despite NO evidence of that in over 20 years. He also wants a neuro-psych evaluation to be done. Mom's going to find out who has done the neuro-psych evaluations for the other intellectually disabled clients of Lyn's speech therapist. Mom's also going to see if any of the families of Lyn's friends and fellow athletes can recommend a neurologist who has experience with the intellectually disabled.
Mom doesn't believe this neurologist has experience with the intellectually disabled because he and his staff all looked confused any time Mom said "our population." In an additional exchange which leads Mom to this belief, he asked Lyn if driving was becoming more difficult. He was surprised when she said "I don't drive! Mom does." He asked about her apartment and living on her own. She said "I live at home." "Oh. You live with your Mom and Dad?" he asked. She bristled "No! I live with Mom." (Our father has been out of the picture since 1978.) The doctor was surprised by these revelations from Lyn so Mom jumped in to remind him that they're essentially working with a 10 year old on a good day. Mom reports that the doctor's confusion just increased.
I'm glad I read the presentation by Matthew Janicki in which he points out that diagnosis of dementia in the intellectually disabled is a challenge due to several factors including lack of understanding on the part of the physician. I think that was the case today. Mom says:
I could have been mad. I could have been discouraged. I decided "No. He doesn't know our
population."
So, if you're reading this and if you know a good neurologist who is familiar with the intellectually disabled, feel free to drop a note my way. We're on the hunt for someone who has a working understanding of our population.
I'm glad you aren't just taking this doctor's decisions without challenging them and looking elsewhere. His lack of expertise and appropriate care makes me quite angry.
ReplyDeleteI'm glad to know that we're not the only ones who felt this way. Honestly, I don't think that he was really listening. I think he made up his mind before he even walked in the room.
ReplyDelete