Awaiting diagnosis

3 weeks ago my 75 year old DH had a Tonic Clonic seizure (formerly called a Grand Mail seizure) at 4:30 am while in his sleep. I thought he was having a nightmare and I was trying to wake him up when I realized it was actually a seizure. he has never experienced a seizure before but I knew it wasn’t a stroke and recognized the signs of seizure. I called 911 and paramedics arrived within 10 minutes. He was totally put of it and very combative with paramedics because he had no idea what was happening, it took them a little while to restrain him, but they finally did and then took him to the ER. He was admitted about an hour from the time the seizure began. It was out of it for quite some time but some of that had to do with the sedatives they gave him to calm him down. Dr. Ordered CT scan and blood work and it all came back ok so they released him around noon as he seemed to be himself again. Told us to follow up with Primary care provider. HE remembers absolutely nothing from the time the seizure happened and can’t really remember too much in the hospital either. Long story short, primary referred him to Neurologist who ordered a laundry list of blood work, MRI, EEG, PET Scan. We have completed everything but the PET which is scheduled for this Tuesday. I have been watching the blood work results trickle in since I have access to that patient portal and his P-tau 217 and ATN profile are both coming back as showing Alzheimer’s disease. He also had trouble with the baseline cognitive test in the office. I have been suspecting something with his memory issue for the last year and a half or so but just kept thinking it was normal aging. He also struggles to find words and ends up using substitution words for things… like he will broom the kitchen floor instead of using the word sweep. He also forgets things we talk about. I am so afraid that we are going to get the AD diagnosis… I can’t even begin to image how life will change. He seems so normal right now. I’ve done so much research on various AI platforms with the test results I have and it seems that it all points to AD. I am so lost.

Comments

  • trottingalong
    trottingalong Member Posts: 1,081
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    Even if you do get the dreaded diagnosis, it won’t change what you already are living with. It will just continue to evolve, as will you, over time. I think the majority of us did feel lost in the beginning of seeing changes in those we love. One day at a time. Treasure the moments you can and keep coming back. This group is a treasure trove of information, compassion and understanding.

  • RMremdler
    RMremdler Member Posts: 48
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    While it is great to have a diagnosis, nothing changes your day-to-day reality of living with someone with dementia. My husband has something, just classified now as mild cognitive impairment, but continues to worsen. I’d like to know what “this” is but whatever it is, we continue on navigating the changes. I will recommend that you get your legal affairs in order if you haven’t already.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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