Newly diagnosed and looking for suggestions navigating doctors and meds

ncenci2 · August 3

My husband was 58 and just diagnosed July 1 with Alzheimer's. We have been very frustrated with the care and support from doctors. He took a test at he PCP's office and did not do well so they referred him to the first neurologist available, who does not seem to have a lot of clinical experience. He ordered MRI, Flexi blood test and PET scan. When the PET scan came back, he shared through Mychart that he has Alzheimer's. I asked if we could come in to discuss options and treatment and cannot get an appointment until the end of August. He main issue now is severe anxiety at night and paranoia. He is up passing around every night. I asked about trying leqembi to slow progression through my chart said he is not a candidate without any good explanation. We are trying to get into an actual specialist but cannot get in until end of October. Any suggestions or recommendation on how to navigate health care or any medications that help with axienty/ sleeplessness? We live a Columbus, OH with many large hospitals including OSU that claim to have cognitive care but you can't get help in any reasonable amount of time. I fear that he is going to miss any opportunities to slow progression and the anxiety and paranoia is going to make him worse.

joanne08 · August 4

I am so sorry to hear about your husbands diagnosis and also about him not being a candidate for Leqembi . My husband was diagnosed at 61 and was on a waiting list for six months for Donanemab and he was not accepted due the stage he is in. Initially they thought he was in the mild stage but some of his cognitive testing indicated he may be further along so he was rejected. As far as medication my DH was prescribed Citalopram for anxiety and Donzepil and Mematine after being rejected for Donanemab.

ncenci2 · August 6

https://alzconnected.org/discussion/comment/279057#Comment_279057

Thanks, Joanne. Did the Citalopram help at all? We tried Mematine a few days but seemed to make things worse.

eaglemom · August 6

Welcome to the message board. The place none of us wants to be, but you'll fine information and support here that you won't find anywhere else.

It is all very scary and you want to get him the help he needs now. I think we can all appreciate that. Sadly though the medical field only works so fast. My DH was diagnosed at 54, so I do understand what you are going through. Our neurologist said "give me a year for the full diagnosis" and that's what it took. During that year he had numerous tests, MRI's, PET scan, CAT scan, blood work, etc.

Has the anxiety and paranoia started since his diagnosis? Or was that happening prior? I would think your PCP would be able to give him something to help calm him during the night. I'd also use the patient portal with the PCP and neurologist and share what he's doing and see what response you receive. Technically your still in the early part of being diagnosed and waiting is difficult. During this time read and educate yourself so you can be as knowledgeable as possible in order to help your husband.

We are here to help and listen.

eagle

invbrown · August 11

I went through those emotions three years ago with my early onset diagnosis. It freaks you out. Our minds are all over the place. Sleep, well I was up all the time. Things t h at helped me. A sleep aid help greatly but it took trying several different kinds. I put my head down and got focused on what do I need to do to make things easier for my wife after I'm too far gone to help. The diagnosis is just that. I focused on slowing down the progression. I feel if have done just that. I have good days and bad days. Iwe look for patterns or things that bring on the bad days. I found stress is a huge contributor to bad days. When the stress is lowered, all of a sudden I'm having great days. During the stress, all I get worked up thinking this is my new normal. It isn't for me. A little stress causes me all kinds of grief. Once you get through the shock of your diagnosis hopefully you can focus on things you need to be doing and exercise that stress out of you. You will have lots of crying. I just found a podcast that helps me. It's called the Forgetting inside the mind of alzheimers. You might take a look at it down the road. It helped me listening to someone with alz talking about what he is feeling and experiences he is having. I asked my wife to listen to it because I wanted her to get a better idea of how I feel inside of me.

This isn't the end of the world. Just a big bump in the road. We have the best times together the last three years. I went on ssdi and she retired early.

I hope this helps someone going through this.

Newly diagnosed and looking for suggestions navigating doctors and meds

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