First time on message board

ksgorr

Hi I'm new here.  My husband was just diagnoised with Alz. early stage.  He has been tested and that's it.  I feel absolutely lost and don't know where I should take him/me for answers.  We have been to the neurologist (see you next year) and a neuro psychiatrist (who is in a hurry and we leave there not knowing what to do.

Does this sound familiar?   Any pointers would be appreciated.  BTW, we live near Raleigh, NC.

SusanB-dil

hi ksgorr - welcome to 'here', but sorry for the reason.  Glad you found our little corner of 'this' world.  (also NC, here) 

Yes, you will get docs like that sometimes. Doesn't seem to matter where you're from.  Do make sure you have DPOA and HIPAA accesses, as that is priority right now!  Is there a 'patient portal' you can access to ask any of those lingering questions?  

Also check out the 'solutions' tab up above and the 'archives' to access a lot of information as well. The book '36-hour Day' is also helpful and a great reference for both now and later.

It is a 'lost' feeling when LO is diagnosed. You are not alone.

Northeaster

Welcome. Sorry that you needed to join this group but I suspect that you'll find support here.

Your journey sounds similar to mine. My DH was given a general diagnosis in May and met with the neurologist (only because his primary care provider insisted because the neurologist didn't think it was necessary) the following month. When the neurologist met with my DH, he requested a further evaluation from a second neurologist on an urgent basis because he was progressing so quickly. That "urgent" apt is scheduled for Jan 2023.  The wait for a neuro-psych appointment is over a year (with over 500 pts on the waiting list). The backlog is incredible and no one seems to be in a hurry but us. I appreciate that there are too few providers for the number of patients but I'm also beginning to conclude, that possibly no one is in a hurry because treatment options are few and the likelihood of slowing the progression is slim. 

I've checked with a few other facilities across the country in an effort to get him in there, and their experience is similar.

ksgorr

Thank you. I'll look into the book.  I thought only my area was short on doctors! I have a feeling the insurance industry has something to do about that.  I appreciate the reply.

Kay82

Welcome. 

I am new as of last night and after 2 posts I already I feel very supported.  Keep asking questions and as recommended set up a patient portal w/the primary care physician. Some resources are more difficult to find, the best resource I have found is others who have or are walking the same journey. 

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HollyBerry

My partner's diagnosis came by way of a geriatrics clinic associated with the University Hospital.  She had the MCI diagnosis already and when they were pretty sure what was going on, they got her into a study that provided the PET scan.  All this to say, do you have an ADRC (Alz Disease Research Center) or other university clinic nearby?  is that another way to access services?  the multidisciplinary team has been really handy.  Their social worker helped us with the medical POA and other documents that were within their wheelhouse, and they have their own connections with OT, etc when needed.  It might be worth investigating.

ksgorr

Thank you. We are near several universities.  I will look into the clinical trials.

DLM122

I agree with the suggestions to visit a university Neurologic Department if you have access.  DW saw a local Neurologist for over two years before throwing up his hands and saying he couldn’t figure it out.  My response was that there is clearly something going on and what would you do if you were in our shoes?  He suggested a “Medical Teaching Facilty”, so I booked appointments at Georgetown and John’s Hopkins University in Baltimore.  It took about three months to get into each of them and Georgetown kinda blew it, but Hopkins was on it and has been very helpful since.  

Best of luck, I hope you find the medical professionals who can best help you.