Does anyone have language problems with Early Onset

Indigal

Hello,

I am new here. I don't have a diagnosis yet but had to leave my job 10 years ago because of executive function issues (I was a hospital pharmacist). In the last 2 years I have been having more and more issues with language. It started out as typing wrong words that start with the same letter as the one I wanted. Now I have a hard time spelling simple words. I am also having a harder time finding words when speaking. I have been seeing a neurologist for 1.5 years. He has done some testing for FrontoTemporal Demenia since I am 59. Nothing has been conclusive but I do show some atrophy in the language area of my brain on MRI. I have read that language problems are more common in Early Onset Alzheimer's disease than later onset. I am feeling very alone.

Iris L.

Welcome Indigal. I have a diagnosis of cognitive impairment not otherwise specified. In the beginning I had a lot of trouble with speech, trying to remember my train of thought, trying to remember the appropriate word, and stammering. I could read only one sentence at a time because I could not remember what I read long enough to have any understanding of a paragraph. I was slow to respond in conversations, people noticed.

My neurologist offered me a trial of Exelon patch at the low dose. Within a few days, I noticed improvement in my speech. At my one month return appointment, I asked for the higher dosage. I have been on it since 2009. I am also on memantine, generic for Namenda. My speech, although not at the level it was when I was a professional, is sufficient for me to function in everyday society. I would say that now, no one notices a deficiency in my speech. So I am satisfied with my treatment.

How have you been living in the ten years since you left your professional work?

Iris

Indigal

Thanks for your response. My mom had dementia and was on Exelon patches. I might be willing to try it. After I left pharmacy, I focused on my tai chi teaching. In 2022 I retired from Tai Chi teaching because I was having a lot of trouble planning classes and knowing what to say during an hour class. I do some volunteer work. I was on a non-profit board and chair of a committee. I resigned last fall because it got too hard to lead meetings. I still volunteer with the organization and attend some of the committee meetings. I recently started volunteering at the library sorting used books for their sales. I am really enjoying that. I love books and listen to audiobooks daily.

Iris L.

Indigal, your various activities have undoubtedly stimulated your cognition. In order to have a trial of Exelon patch, you must have a diagnosis. You need to rule out the medical dementia mimics. Have you seen a doctor or neurologist lately?

iris

Indigal

Yes, my next neurologist appointment is this month. I really don't expect him to do much of anything. He is referring me to a behavioral neurologist and my appointment with her isn't until April. I hope she will give me a diagnosis. I want to see if I am eligible for SSDI. I had to close my business in 2022.

Iris L.

How old are you? If you are of retirement age, you may not be eligible for SSDI.

Iris

Indigal

I am 59.

Iris L.

Indigal, you should still be eligible for SSDI.

You can apply for Compassionate Allowance, which can fast-track your application if you have a dementia diagnosis.

You might think about discussing this with a Care Consultant at the Alzheimer's Association (1-800-272-3900). The application is complicated.

You might also think about hiring a disability lawyer to assist you.

You might also think about getting a second opinion with a university medical center Memory Clinic. Frankly, IMO, your evaluation is taking too long. You should have had some conclusion after 1 1/2 years,IMO.

Iris

Indigal

I have a recommendation for a disability lawyer once I get a diagnosis. The specialist I am seeing in April is at a Memory Clinic. I really hope to get a diagnosis then (or at least after whatever testing she wants done). The question seems to be whether I have FTD or EOAD. Either one is a Compassionate Allowance diagnosis but I need the diagnosis to apply for SSDI.

I have read that is takes an average of 3.5 years to get a FTD diagnosis. So unfortunately, 1.5 years is not that long compared to how long some people have to wait.

I wish diagnosis wasn't such a long drawn out process. I understand doctors wanting to see changes over time before giving a serious diagnosis such as FTD or EOAD, but it is really frustrating to patients and their families to have to wait so long.

jeaamom4

Hi, I am 61 and not diagnosed yet. But wanted to jump in since my ex-husband was diagnosed with FTD at age 47. I became a single mother of 4 small children and a caregiver for a difficult dementia person. It took 3.5 years and 3 different doctors to get a diagnosis. I was not going to give up because I knew it was normal for a 47 year old to wet the bed. We finally got a diagnosis from a geriatrician who specializes in dementia. Tom had 2 neuropsych evaluations almost a year apart and the difference in scores was enough to qualify him. Filing for disability was one of the hardest things I’ve done paperwork wise. The disability lawyer told me there was no need to pay a lawyer because FTD is on the compassionate allowance list. Finally after 7 months (without his income) the disability was approved. The first biggest symptom I noticed was a change in personality. His anger issues and depression became magnified. He became delusional and obsessed about aliens and believed we all had alien cells. Tom never lost memory, it remained better than mine, which is common with FTD. He was unable to initiate tasks and had poor executive function. He also had visual problems. As far as loss of peripheral vision, and visual processing. In Michigan you can drive with dementia as long as you are deemed safe. Tom continued working after diagnosis. Boy was that a very difficult day when I took driving away. I told him we would lose everything if he killed someone in a car accident and they found out he had dementia.

I have read so many articles about the caregiver becoming a higher risk for dementia. And also living with an unhealthy high level of stress for so many years. I had times towards the end when I feared for my life. Thankfully he agreed to a divorce and it only took 45 minutes to get the Medicaid approved online. Wish I had done that years earlier. I moved him to an apartment and continued to manage his money and medical. He ended up dying from cancer 2 years ago.

I also have worked in the nursing homes with dementia patients as an OT.

so when I see myself having a lot of the same struggles it scares me.

I also have looked into SSDI and found out that it is actually easier to get approved after age 60. And yes you can file at 62. Which means you would get your full retirement benefits areas of the low rate you would get at 62.

please take care

Indigal

I am so sorry you had to go through such a difficult time with your ex-husband. It sounds like you took good care of him even after you weren't married anymore.

It makes sense for caregivers to have a higher risk of dementia. My dad died of dementia several years ago. I strongly believe the stress of caring for my mom with dementia all by himself for many years was a big factor.

I live in Michigan and have wondered about the driving laws with dementia. I have cut back on driving because I can tell I am not as good at it anymore. I feel OK driving to local places like the grocery store, library, etc. but don't like to drive on the highway anymore.

I have had a little bit of personality change (more impatient, etc) but not the extreme behavior I have read about with behavioral variant FTD. My memory is pretty good. I scored well in that area in my neuropsych tests in 9/22. I imagine I will have more neuropsych testing at the memory clinic in April.

My suspicion is that I have logopenic aphasia AD. Apparently, in rare cases AD presents with language problems first rather than memory problems.

I know it is hard to have some of the same struggles as people with dementia. More and more going about my day I feel like I am acting like my mom when she had dementia.

Thank you for your response. I read some of your story on another post. I hope to hear more from you.