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Alzheimers care and treatments: Consult with Mayo Clinic?
Caregivers: Dementia | Last Active: May 27 8:52pm | Replies (112)Comment receiving replies
Hi @alju, this is the group I thought may be a place you want to plug in.
You mention living in California and not necessarily being close to a Mayo location. That’s ok! Members here are talking about testing, 2nd opinions, caregiving, Donepezil treatment, etc. I hope you are comfortable sharing about your recent diagnosis and your doctors recommendation. Maybe review this thread and start asking away! You have found a wonderful place to find encouragement and others with experience.
@japlok created this discussion and you can easily navigate to the the beginning here:
-Alzheimer’s Care Treatment Discussion https://connect.mayoclinic.org/discussion/alzheimers-care-treatments/
Will you share more about what you know, how you are feeling, and what is next?
Replies to "Hi @alju, this is the group I thought may be a place you want to plug..."
@jlharsh
I am a bit confused. I replied to this post but it is not displayed here so not sure why.
I'll try to find it. There are a few groups that are connected to dementia I've seen on Mayo Clinic so I must have been in another one?
Mostly I am feeling frightened right now.
@jlharsh
Hi
Did you receive my reply ? I sent it last night.
@jlharsh and @alju, Janell, thank you for sharing the discussion link with @alju. I am happy to answer any questions you have that I have knowledge of. As Janell said, this board is for anyone anywhere that needs information or just needs to vent, cry, or scream.
My wife is on her 18 or 19 Leqembi infusion and is tolerating it well. She is also on Donepezil and Memantine. I have pulled back on the Memantine to just one dose a day instead of two. Just trying to minimize the chemicals that go into her body cause who knows what it may be doing that we don't yet know about. We also recently started going to Speech therapy and it has been very helpful. She doesn't have any issues with talking but it provides assistance with day-to-day activities in addition to helping her with a strategy to find words among other things. The therapist must have extensive experience with AD/Dementia, otherwise they will not know what the patient needs.
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@jlharsh
Thank you so much for sending this . Right now I am trying to hold myself together. I think since I know that this is indeed the problem, everything has gotten worse , if that makes any sense.
I am in a panic because I don't have a doctor. The doctor I saw for less that 30 minutes who ordered the blood tests was abrupt, cold and indifferent and said if I wanted she would prescribe the Donepezil. So the first thing I must do is find another doctor. My pcp is at UCLA so I will try to get an appointment there. The scary thing is I have no family near at all who can help me. So that is a big worry. There seems to be a dramatic worsening of symptoms the last few days ..... forgetting things, even typing an email last night I made countless errors because my fingers kept getting on the wrong keys- that's something that has just begun. I am making countless errors and have to back up and retype. I am wondering if my panic is doing this or what is going on. Very frightening. I think I will have to get some anxiety med if this continues. I am in a very bad place right now .