Just Diagnosed with AD
Good Morning,
New to this group. I was just diagnosed with AD (early stage). I am 60 and I still function at a high level. Because I can function at a high level, it is very difficult to accept this. My biggest fear is that of the unknown. How long am I going to be able function at this level? When will the debilitating symptoms start? I am thinking about being treated with Leqembi or Kisunla. I am going to get blood work next week to see if all is ok to start. I want to be proactive and fight this head on. I stopped drinking and I am in the process of changing my diet and trying to do all the right things from a lifestyle standpoint. But damn this is hard.
Comments
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So, what were your symptoms? For me, it took my falling eight times to see my neurologist, and he said it wasn't the work he did on my spinal fusion but that he saw cloudiness in my brain, and I needed to see a different neurologist. That is when I knew that my genetic past had caught up with me. I am the fourth generation on my mothers side. But they were all in their 70s and 80s. I am 55, but it might have started in my forties.
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Welcome alm. If you are functioning at a high level, how were you diagnosed with AD? I was having trouble functioning, that's why I sought an evaluation.
Iris
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My daughter thought that I was having some memory issues and she was suggesting I get a neuropsych evaluation. I did so, more to just to appease her thinking nothing was wrong with me. The neuropsych evaluation showed I had mild cognitive impairment. I consulted with a neurologist and had an MRI and PET scan. MRI was normal, but PET showed signs of deterioration suggesting AD. I have some forgetfulness here and there, but I'm still able to work, drive, exercise, etc. I'm getting a second opinion from the Mayo clinic to confirm the diagnosis.
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Alm, you are diagnosed early when you may have a better chance of moderating your illness.
Iris
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Did they offer to do a lumbar puncture for the amyloid and tau ratios or genetic testing for ApoE?
My wife who’s 64 was diagnosed in January with MCI after neuro testing with a neuro psychiatrist because she was having trouble finding her words and some trouble with recognizing familiar places when driving. After that diagnosis, they offered genetic testing and lumbar puncture. She does not have the gene that’s associated with increase risk. She did have amyloid and tau ratios that have been shown to be associated with increase risk. So then the diagnosis was updated to MCI with Alzheimer’s pathology. The neurologist submitted the info to our insurance company to approve Lequembi. The insurance company required the PET scan. She had that and that also indicated probable AD. So they approved the request for Leqembi which she will start on October 4.
She’s also taking rivastigmine after having side effects with donepezil. Did they offer you either of those meds?
Since her diagnosis, we’ve been attending a support group twice a month virtually. That seems to be helping us cope. We also went to a lawyer to set up wills and power of attorneys. She’s very functional working a part time job, driving, living mostly a normal life at this point. It’s hard to imagine her progressing. I can’t imagine it happening because she’s very healthy. So far the only thing we’ve identified that might explain this is all the head injuries she’s had over the years (car accidents and sports related).0 -
My physician did not discuss a lumbar puncture, but I had the testing done for ApoE. Still waiting on the results for that. My doctor discussed leqembi and kisunla and I am leaning toward that, but I'm concerned about the potential for serious side effects. I am also looking into stem cell therapy. The Japan version of the FDA recently approved a stem cell therapy regimen to treat AD that was developed by a research organization in Korea. Today, I spoke with someone based in the US about the treatment in Japan and it is a pretty long and expensive processes. But I am moving forward with the next step with providing medical records and providing a full medical history, etc. Finally, I am in the process of getting consultations with academic centers such as Mayo Clinic and Cleveland Clinic. However, the wait times for someone in the early stages like me are in the months and not weeks.
I am also starting to get involved with support groups. This is all new to me…I received the diagnosis about a month ago.
Where are you located? I am in Palm Beach County, Florida. Best wishes and prayers to you and your wife.
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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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