undefined
Home / Lifestyle / I have early-onset Alzheimer’s. I’m 48.

I have early-onset Alzheimer’s. I’m 48.

Spread the love

Misplacing your car keys. Leaving the stove on. Forgetting the name of a parent at your kid’s school. Memory lapses like these are common, especially when we’re tired or have a lot on our minds. But in some cases, forgetfulness, particularly if it becomes more frequent or severe, can be a sign of something more serious. For 48-year-old Rebecca Luna, it was. After a series of cognitive tests and scans, she was told by a neurologist that she has early-onset (also known as young-onset) Alzheimer’s, which affects people under age 65, with many of them in their 40s and 50s. She shared her diagnosis in a viral TikTok post last month and has decided to document her journey. (She also started a GoFundMe to cover her medical expenses and help support her family.) In this interview with Yahoo Life, Luna shares her first symptoms, what it’s like to live with early-onset Alzheimer’s, the good advice she received from strangers and how she’s managing life now.

Two years ago, I was in a pretty stressful period of my life. I did kind of live in a fast-paced, multitasking sort of way. I’m in recovery and I’m a single parent working full-time. I have ADHD as well. So I was stressed, needless to say, and so any of the [memory lapses] that were happening at that time, I chalked up to perimenopause.

I’ve been in my job for a few years. When I opened the computer [one morning] and looked at it, I didn’t know what to do. I didn’t know where to start. Normally, you would start your job and you’d be like, “Oh, I’ve got to do this, this, this.” I had no idea. There was just … nothingness.

Two things happened [next] that were obviously [signs that] something was going on. I was boiling an egg. I left it on the stove, and then I walked downtown, which is a half-hour walk. When I got downtown, I realized I left the stove on. I ran home, and my house was covered in smoke. So, it literally almost caught my house on fire.

[Another time] I was in the gym. I finished my workout and went out to my car. I’m never somebody who loses their keys. I get in my car. I’m looking for my keys. I’m looking through my bag. I can’t find it. I’m looking under the seats. I’m like, “This is weird.” And then I went to the back seat and looked on the top of the car because sometimes I’ll have a coffee and put it on top of my car. It wasn’t there. I looked under the car. Not there. I was like, “OK, this is ridiculous.”

I did a whole swoop again — inside, outside, in the back seat — and then I sat down and I just paused for a minute. And then I heard the car. The car was on, and the keys were in the ignition. My car was on that whole time. I had completely blanked out the process of getting in, putting the key in and turning the ignition on.

Getting diagnosed and being in denial

I’ve struggled with mental health and had a psychiatrist at the time. She did some cognitive tests, and I was failing them. About nine months ago, I saw the neurologist for the first time. He did the two-hour [cognitive test]. I failed that one. Then he looked at my MRIs, looked at other things noted by the psychiatrist, and he just walked in with pamphlets of early-onset Alzheimer’s. There was no diagnosis at that time. This was his suspicion. [Further testing, including her medial temporal atrophy (MTA) score, which is a diagnostic tool for dementia, led to a diagnosis of early-onset Alzheimer’s.]

I have two children. My older daughter, she’s a planner. So, her first response was like, “OK, well, do I need to buy a house that can accommodate you and I’m going to take care of you?” And then my younger daughter, it’s almost like it’s not new to her because she’s watched me this whole time. But she just told me recently that she’s in denial.

My mom didn’t believe me either, and so about two months ago, I sent her one of the [doctor’s] clinical notes where he’s put Alzheimer’s on it. And she lost it then because I think she wasn’t believing it until she saw it on a piece of paper.

It’s so weird. I make fun of it all the time because that’s just generally who I am. I like to keep things kind of light and funny. It’s important for me to make fun of myself, to keep the morale high for the people around me, but I also need it because it is so serious. I could totally take this and just go on an isolation/depression bender, and I do not want to do that.

Going viral on social media

I was looking everywhere for resources. My partner and I felt really alone because our family was in denial, and so we didn’t feel like we could talk to anyone. There were only a few people [with young-onset Alzheimer’s] on [TikTok], and I just thought, “I’m going to put a video out there.” And it has 2 million views, which is insane.

I think all of the suggestions [from viewers commenting on the video] have been so amazing. They’re amazing for early-onset Alzheimer’s, but I honestly think the suggestions are great just for everyday living, really. I mean, to minimize the things in your home, which I just did the other day — that was really helpful. [One commenter suggested making a playlist of favorite songs to stay connected to yourself.] I am 100% going to do that.

Somebody was saying to journal what I’m doing during the day because what’s one of my new things is I shower and then two hours later I feel like I need to have a shower. I forget, so I’m trying to plan a shower, but I already had one. So people are saying, “Write down what you’ve already done during the day” as you’re doing them, which is brilliant because when I forget that I’ve showered, I can just look and see that I did.

Another one that’s on the top of my to-do list is to get a family member to join in on a bank account for me. That was a suggestion from a TikToker.

I care so much about other people feeling held and heard and seen and supported, but seeing this community, that’s made it even more important, and I just want them to know that. The response has been so incredible.

If you are a loved one [of someone with Alzheimer’s], my suggestion is to meet them where they’re at. What I’ve found really helpful with my partner is not to be questioned but reminded, and to just believe them. And give them a hug. Tell them you love them. Because really, if I’m being completely honest, what I need is a hug from my family.



Source link

Tagged: