Being prepared for the Neuropsychologist appointment: Tips

@karen285 Thank you for being concerned about my getting a diagnosis. I do have a diagnosis. It’s chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids. Mouthful! It means i had lesions on my brain that affected almost everything. After 6 years and a few more problems thrown into the mix, I’m working on getting better!

Hi @jamesmiles, I'm tagging fellow members @meitsjustme @centre @maryvc @tgeno @tunared who can share how they were able to get their partners referred for an evaluation by a neuropsychologist.

If you live near a Mayo Clinic facility, you may be able to self refer. See here http://mayocl.in/1mtmR63

I assume your husband has not yet been officially diagnosed with cognitive impairment or dementia, but you're seeing the signs. Is that correct?

Hi Colleen,
My husband has been seeing a neurologist for years for an essential tremor. A few years ago I noticed his memory loss and asked to accompany him to his neurology appointment. The doctor ordered an MRI of the brain, and it showed no plaques or blood vessel occlusion. So, we let things ride for a number of years. My husband's memory problems stayed static for a couple of years, but this year it got worse. I asked to accompany him again to his neurology appointment. The doctor ordered an EEG, another MRI, and a neuro-psych exam. That's how it happened for us. I hope this history helps other people with the same problems. My husband's family has a history of Alzheimers Disease. Good luck with your search for answers. We're still searching, too.

My wife began going to bed very early in early 2022, like 2 or 3 in the afternoon and sleeping for 11 or 12 hours. Clearly this was not normal. She also expected me to go to bed at the same time; this was a source of constant arguments. Her short term memory was clearly failing. Then I discovered that bill she normally paid were not getting paid. There were a couple of bizarre behavioral incidents that caused me to call our PCP. He ordered a MRI of her brain and blood tests. The MRI was inconclusive but he referred her to a neurologist. The blood test revealed a dangerous drop in her blood sodium levels and he referred her to a nephrologist. The neurologist did an in-office cognitive test, which she failed, after which he referred her to a neuropsychologist for a thorough exam. Over the course of the next few months, the neuropsych exam concluded that she had the beginnings of Alzheimer's dementia, and the nephrologist determined that she had a syndrome that was affecting her blood sodium, which has significant cognitive effects. The end result is that she takes sodium chloride tablets twice a day, which has brought her blood sodium levels to close to normal, and the neurologist has her on 10 mg Aricept. Both of these have significantly improved her short term memory, but it is still problematic, and she still sleeps a lot. However, we now know what we're dealing with and responding accordingly. BTW, she totally accepts her diagnosis, and we are working together to do things to compensate for her memory issues, and have done all the necessary legal work to establish trusts, wills and powers of attorney.

I did not know that sleeping a lot was part of the early symptoms. Good golly, we've been in this longer than I thought. Husband was needing super long stretches of sleep back as far as 2015-2016....could even have been earlier. He'd go to bed by 8:00 or 9:00 at night and sleep until noon the next day. Keep sharing people, I have much to learn.

My 92 year old husband was diagnosed with MCI in 2019 (now moderate dementia) and he's fairly stable except for his ambulation, which is deteriorating. And a bit more anxiety about knowing where I am or when I'll be home. I can usually be away for about 2 hours, using the Alexa Drop-In Feature to talk to him and let him know where I am while I'm away. He too goes to bed at 8:30 or 9 and sleeps until 10. Or 11. I don't mind the early bedtime for me too because then I can read my Kindle in peace! He has moderate to severe sleep apnea but is very compliant about wearing his CPAP mask. Recently he's been having more apnea events but we can't get in to see his pulmonologist until December. All of his contemporaries have died, so I really have no one to compare him to! Is it being 92 and just being tired because of age (his explanation); or is it the dementia? He had a 7:15 am cataract surgery appointment and we weren't late, so it seems he can get up if he needs to. I thought he might be depressed, but adding more Lexapro did absolutely nothing, so his doctor weaned him off that. I've asked his geriatrician and his neurologist and they both have responded with the expected "it could be age or the progression of the disease". It doesn't seem to be detrimental to him when I push him to get up because I need him to be out of bed while I'm out of the house. It's just easier and safer, from his standpoint, to stay in bed. He has a great appetite, is cheerful and not at all belligerent or abusive. So what and I complaining about!!!