My journey so far

Marchbanks

Here’s my story. About 2 years ago I began to notice changes in my husband’s memory and behavior. We were big outdoor enthusiasts, travelers and longtime birders and my husband loved photography. He began to complain about his binoculars and camera, they were not working he said and replaced them. I discovered he wasn’t paying our bills, he began missing appointments for haircuts, the dentist, etc. He began drinking heavily to the point of passing out and remembering nothing. I thought he was becoming an alcoholic and this lead to many fights.

Fast forward to now, my former super fit (run 4 miles, swim a mile, spin class, hike for miles) healthly eater husband is unrecognizable physically or mentally. He has gained 40+ pounds, eats only sugar and carbs and drinks copious amounts of wine and beer. He spends his whole day lying on the couch and struggles to get up. It’s become a problem because he weighs so much now I can’t help him up.He has lost all interest in his lifetime passions.

Of all his symptoms nothing compares to the nonstop maniacal laughing. It is like a CIA level torture for me. It does not stop unless he is asleep. Currently trying generic seroquel but also tried Neudexta which did nothing. It has nothing to do with whether something is funny, he just can’t control it. The neurologist did not think it was pseudo bulbar.

MRI negative, EEG negative, blood tests shows nothing significant. Neurologist will only diagnosis dementia. Geriatric psychiatrist NP thinks he has FTD and so do I. He checks all the boxes but he is 70 and I know it’s more common in younger people. He definitely has all the negative behavioral issues that FTD brings.

Just wondering if anyone on here has seen this level of rapid decline with FTD or Alzheimers?

Also, thank you all for the advice over the last year. I’ve learned so much on this forum.

trottingalong

You poor thing. I hope someone on here has dealt with what you are dealing with,

GothicGremlin

Hi @Marchbanks - I'm so sorry.

I had similar experiences with my sister (FTD and Alzheimer's), but they weren't exactly the same as yours. And as you mentioned, younger people tend to be diagnosed with FTD. My sister was when almost 59 when she was diagnosed. She was diagnosed in 2018, and she passed away early last year, so yes, very rapid decline.

In the mild cognitive impairment stage (right before stage 4), she had several weird episodes. My family is Italian and forgot how to make meatballs. She made spaghetti sauce for an occasion, and it was so off my cousin had to redo it.

The kicker for me was when she came to visit me when I was still living in San Francisco. She parked miles away from our apartment (where she'd been numerous times over 20+ years). Instead, she parked her car in a parking garage and then couldn't find it. She thought her car was lost and that she would have to go out and buy a new one. That was just weird. We found her car, btw.

She had other behaviors during the different stages, but none like the laughing you describe. In stage 6 she had hallucinations, and a persistent hallucination, "The Lady." And then there was the nonstop screaming. Seroquel helped some.

Have you been able to do a PET scan? The MRI and PET scan combo was what led to a diagnosis for my sister.

SDianeL

so sorry about your DH. My husband was diagnosed with dementia probably vascular. He didn’t have the laughing behavior but he did have vision problems. I kept a list of his behaviors and sent them often to all 3 of his doctors. 18 months after his original diagnosis I sent a message that he said he saw a big black spot in his right eye. I took him to the eye clinic and they said his eyes were fine. The Neurologist answered that she looked again at his last CT Scan and his behaviors and eye symptoms were consistent with Alzheimer’s-Posterior Cortical Atrophy. That was in 2023. He passed away in August last year. Google Posterior Cortical Atrophy and see if any behaviors are the same as your husband. Diagnosing the type of dementia is very difficult. A person can have 2 types vascular dementia and Alzheimer’s. Please keep us posted.

Marchbanks

https://alzconnected.org/discussion/comment/234968#Comment_234968

https://alzconnected.org/discussion/comment/234968#Comment_234968

Yikes, screaming sounds terrible. I’m having enough trouble with the crazy laughter, I can’t imagine how hard that must have been. My husband also could not find a friend’s house that he had been to many, many times. I’ve stopped the driving but that’s a whole other post about how difficult that has been.

My lousy neurologist said there was no point in a PET scan since nothing could be done regardless of what it showed. I’ve considered paying out of pocket just to get more information but ultimately I may never get an answer.

Marchbanks

https://alzconnected.org/discussion/comment/234970#Comment_234970

Thank you, I did look at this based on other posts you have made but he doesn’t have the vision problems or spatial issues. As mentioned above, his neurologist did not order any additional scans because he just didn’t think it would change the outcome in terms of treatment. He also told me I didn’t need to see him going forward once he found out he was seeing a geriatric psychiatrist NP who manages his meds. Once he diagnosed dementia based on the MOCA test he kinda kicked us to the curb.

I also keep a list of all his symptoms. It’s a long list…..

CampCarol

Have you considered a 2nd Neurologist opinion? We went to more than one to get a proper diagnosis. Just a thought…

Marchbanks

He has an appointment with his regular GP next month for his annual. I think he will be shocked by the change in my husband. I will ask about another neurologist but it takes forever to get in to see one and some won’t see dementia patients. The one I’d like to see has a one year waiting list and is strictly out of pocket only.

SDianeL

https://alzconnected.org/discussion/comment/234990#Comment_234990

Sorry. I thought I read that he had visual problems. Glad he doesn’t have PCA. I agree that more scans aren’t necessary as it probably won’t change the diagnosis or the outcome. As the disease progresses., I questioned every test they wanted to do or specialist he was seeing. Those things only increase the person’s anxiety. As my DH progressed I stopped all specialist visits and relied on his PCP and Geri Psyche doctors only.