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Joined: 6/9/2021
Posts: 1
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Desperately seeking clarity in this ocean of information to know what I need to do to safeguard my family. It's been a couple of months and I'm waiting for my next appointment to another neurologist at WF. I have been able to tell most of my family as the reality is sinking in. I have been a part of this site for several years as I initially joined due being a caregiver for my father who had early onset FTD. Now its due to my diagnosis. It is utterly surreal.
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Joined: 12/15/2011
Posts: 18333
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Welcome mtngirl, and hang on! You probably already know that there are many dementia mimics. Even being a caregiver can affect your cognition. Are you still caregiving? Are you getting respite? The journey is indeed long. I hope you will get some clear answers at your next appointment.
Iris L.
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Joined: 6/28/2022
Posts: 1
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Hi mtngirl92. How did it go with your neurologist's appointment? I hope everything is okay.
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Joined: 8/31/2022
Posts: 1
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Hi. I am so sorry about the diagnosis. It is so confusing and scary, especially if you have a family. I too am in a similar situation. I was and am caring for my mother who has Alzheimers when I noticed I had similar issues with my memory. It started at 46 when I retired. I wasn't able to remember anything I read, play pickleball without forgetting who was up, etc... I took a series of Neurological Tests and they told me I had the beginning stages of dementia. This put me into a talespin. My children were still in school. I did create a book with all the information my family needs on everything from, finances, school, important forms, etc.... This helped. I also wrote down what I wanted my family to know about how special they are too me. I then saw a Neurologist. He said there was no dementing factors on the images. Maybe it will be the same for you. I still feel like I am getting worse with my memory and need to follow up but it is scary. It does make you appreciate every day you have with your family even more. I don't know if you are religious, but I can honestly say pray and keep the faith. Enjoy every day with your family and know you are not alone.
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Joined: 4/7/2019
Posts: 463
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Hi Lynette and mtngirl92 --
Welcome! Iris is right, there are dementia mimics out there, like lack of vitamin B-12. I'd say get some tests done and see if there is anything else at play.
I don't know if there is anything I can do to help, but ping me and I'll do my best. I'm here because my sister was diagnosed with early onset Alzheimer's too. She also has Primary Progressive Aphasia, which adds more complexity. Her Alzheimer's is fairly advanced now - she was diagnosed with Alzheimer's in 2018, with mild cognitive impairment beginning around 2011.
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Joined: 9/5/2022
Posts: 31
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I'm 49 and being tested for early on dementia. My mom has dementia and lives in a home. I'm starting to show signs of memory loss and mental in on tests. I also have the dementia.
My doctor diagnosed me with showing the early stages of dementia.
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Joined: 12/15/2011
Posts: 18333
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Welcome, Amy Joy. I'm sorry to learn you are dealing with these serious issues, your mom's illness and your own memory loss. I myself began with serious memory loss at about age thirty-seven. I had to leave my profession as a pediatrician due to memory loss. At the time I thought I was undergoing temporary stress, and that I would soon return to work. But that never happened. It's very important to do all necessary tests to search for dementia mimics, since there are many causes of memory loss. In my case, after extensive testing, my neurologist determined that I don't have Alzheimer's Disease. My diagnosis remains cognitive impairment not otherwise specified.
Very often caregivers become overwhelmed due to their responsibilities and develop memory loss and other significant health problems. You need to make sure you are getting breaks and respite. Be sure to let the doctor check you out completely. In the meantime, follow Best Practices. Come back and let us know how you are coming along, Amy Joy.
Iris
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Joined: 9/6/2022
Posts: 1
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Just Diagnosed 63 year old.
On 6/24, after tests and an MRI, my doctor (who is a senior physician at a major Alzheimer's clinic) diagnosed me with early onset. Thus, I had to quit my job and apply for disability. Further, I was not allowed to drive anymore. I had recent short term memory issues, but that was work related - getting training, but not remembering enough of it. Re-asking questions about topics that had recently been explained to me. What caused me to get diagnosed was a week in which I could not find my home (lived here 18 years) or my Mother's home (lived there 16 years.) I would get to the right street, but couldn't find the homes. That was very new and very disturbing. Since my diagnosis I have undergone a number of tests. I see a neurologist on 10/4. I am getting daily exercise with morning walks, changed to the Mediterranean Diet, play at least one word find game per day and read everyday. This has hit me like a ton of bricks. I have gotten tremendous support from my family - who are all local to me in Tampa. What I would like to learn about are other ways I can try to slow the process down.
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Joined: 12/15/2011
Posts: 18333
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Welcome, Kennard. I'm sorry to learn about your diagnosis. It appears your doctor has done a good work-up. Did you undergo extensive neurocognitive testing by a neuropsychologist?. This testing examines various aspects of cognition to determine strengths and weaknesses. I definitely recommend this. It takes four to six hours. I
Be aware that a diagnosis of Alzheimer's Disease must reveal a decline in cognition over time. In my case, although my initial neurocognitive testing showed many deficits, I had only mild decline in some areas, even improvement in other areas. My neurologist continued testing, and eventually, after an Amviid PET scan, declared that I did not have Alzheimer's Disease. I still have cognitive deficits, hence a diagnosis of cognitive impairment nos.
I continue with the healthful brain habits that you are performing that we call Best Practices. Be sure that you are getting restful sleep and avoiding stress. Were you evaluated for sleep apnea, which is a known cause of memory loss and other serious and even dangerous health problems? You would need an overnight sleep study in a sleep lab. I myself do have sleep apnea, apparently for many years undiagnosed. Did long-term sleep apnea cause permanent brain damage? No one will tell me.
Please let me know what the neurologist has to tell you next month. In the meantime, continue what you are doing and stay strong!
Iris
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Joined: 9/10/2022
Posts: 1
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I'm new to this site. My husband was diagnosed with EO alzheimers he's 56. I'm terrified for what the future holds for us. I'm his caregiver and am planning on keeping him home with me. He's already unable to walk on his own and forgets where he is and who I am.
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Joined: 12/9/2011
Posts: 13459
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Hello Cowboys Girl and a very warm welcome to you. It is certainly a difficult path and as you say, terrifying to find oneself in such a life altering change, but you have reached a very supportive place where you will be understood and where you will find all sorts of good experiential wisdom from those who are farther along on t their journey. There is help to be had and good input for you; however, I would like to recommend that you Post on the Spousal and Partner Forum; it is far better attended and you will get much more input. There are multiple people there whose spouse has been diagnosed with early onset. Hope to see you there soon.
We are all here in support of one another, and that now includes you too!
J.
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Joined: 9/5/2022
Posts: 31
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Thank you for kind welcome
Everyone is so nice here
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