University Group

A year ago, Mom was made aware of a group of doctors associated with the University of New Mexico who are focused on helping intellectually disabled individuals.  The group apparently consists of several specialists including neurologists and cardiologists.  One of Lyn's team members passed to Mom the application forms that would need to be filled out in order for the group to consider taking Lyn on as a patient.  Mom didn't fill out the forms because the forms led her to believe they had a different focus.  The forms asked a tremendous amount of questions that were centered on any sexual abuse a patient may have experienced.

Fast forward to a few months ago when Mom was able to start attending the Alzheimer's support group.  Mom continues to attend and is finding it very beneficial.  The support group's facilitator works to help connect participants to resources in the community which may be of use to them.  She approached Mom with the information about this same group of doctors associated with the University. This time, however, she was able to confirm Lyn's needs were within the group's area of focus.  She additionally took the extra step to put Mom in direct contact with the head of the group.

Mom has now had a couple of conversations with the lady in question.  Mom has gathered all the information about Lyn that was needed for the group to initially review.  Gathering the information proved to be fairly simple because of the notes that Mom has to keep and the reports she has to turn into Lyn's case managers.  Since Lyn's diagnosis last year, Mom has been keeping copies of all test results.  The University group has set an expectation that they may ask Lyn to repeat tests or take new ones better targeted to an intellectually disabled patient.  I deeply hope that a new neuro-psych evaluation is performed using the tests that are not geared for a normalized population.

An initial meeting has been set up.  The meeting will involve doctors from the University group, Mom, Lyn and at least two members of Lyn's team.  I also get to attend.  The meeting happens to be scheduled while I'm in town and the representative from the University was most welcoming to having me participate in the discussion.

We don't know what, if anything, will result from Lyn's interaction with this group of doctors.  Maybe the interaction is one that benefits their understanding of intellectually disabled patients more than it benefits Lyn.  That would be a wonderful outcome in itself.  If nothing else, this may provide Lyn an opportunity to be evaluated and treated by doctors who accept dementia in a patient of her very young age or in a patient with her existing disability.  It would just be nice to have someone say "Yes, I see." instead of "I won't list this as dementia because she's still able to communicate" or "...because I don't believe it is possible in someone her age."


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