Coping

Welcome, Stacy! I'm sorry to learn about your diagnosis. It is a shock to hear. Although there is no cure, there are many steps you can take to live your life with Alzheimer's Disease. The first thing is do is to make sure that you have had a thorough evaluation, because there are many medical illnesses that are dementia mimics. Also many medications have cognitive and memory loss as side effects, especially in older adults. Make sure everything has been checked out.

If in fact you do have early onset AD, then there are steps you can take to prolong the early stages and improve your functioning. Can you tell me what you are doing for yourself now?

Iris

Hi Stacy,

I’m sorry to hear about your diagnosis too I was 55 years old. I am a pescatarian but I am more a vegetarian. I eat salmon when I feel like it. I have not read the “first survivors of Alzheimer’s” yet. How do you like it? I am starting to walk more than I used to before the diagnosis and I also had a heart attack caused by SCAD and many other complications. It had been a very long ride. So I’m grateful for the opportunity to get back into walking. Hopefully someday I can run again. Not holding my breath on that. I’ve accepted that unfortunately. I too take donzepil. I will be having my 2nd neuropysch test tomorrow. I don’t think I have processed the diagnosis because of my other health issues or I just have the emotional attachment to it if this makes sense. I hope you keep busy and feel positive about yourself. You are stronger than you may think

Im with both of you. I am incredibly depressed and right now not very active, I have some other health issues that interfere with going walks and even sleeping. Staying social a bit and having a routine help. What’s interesting when I disclose most listen with empathy, making some helpful comments, and then we move on to other topics. That helps me not ruminate about my symptoms now and what the future holds. I enjoy watching Netflix etc because that allows an escape Anything which gives you a break from your very understandable negative, scared, angry thoughts and emotions helps. I also see a therapist every week which also helps ground me. As for the future Im trying not to dwell on that right now though it is right below the surface because I have limited income, live alone and mo family around. Im kind of worried out right now, so just living day to day. I hope you find a way to have some break and even moments of peace in the face of this devastating disease.

Thanks Iris for your comment. Could you explain the no clear line between dementia and MCI a bit, and who makes that determination? At Cleveland Clinic, I was told by the neurologist, who I was referred to by my local neurologist. Based on my previous tests/scans he said would have diagnosed me with MCI in 2015 and now feels I have slipped into dementia/Alzheimers based on more recent testing, my history and talking with him, and what he calls "wandering" episodes, but he explained that diagnosis is a wide umbrella hence has referred me to a speciality Brain Health institute--he was a concussion and trigeminal neuralgia specialist and not Alzheimer's. We were too shocked to ask many questions or to process anything. We went there assuming my symptoms were related to the TN and likewise the result of several concussions, which he explained why it wasn't that, nor brain inflammation from my autoimmune issues. We are still hopeful it isn't EO but also trying to brace ourselves if it is so we can be better prepared to absorb and question. The weeks up to this appointment have been a roller coaster for sure! But it has made us get our affairs in order. Any insights on that line which does seem rather fuzzy would be helpful. And questions to ask... we travel 11 hours to go to Cleveland as they are one of the leading research teams for trigmenial neuralgia. Thanks again for your thoughts. You've heard the saying "God gives you only what you can handle" but this one has me juggling (and hoping not) more than handling.

Jglehman, if I understand you correctly, your neurologist has determined that you have entered the earliest stage of dementia, is unsure of the underlying pathology, and essentially wants you to get a second opinion from the folks who know this stuff inside and out. I find it reassuring that he has referred you to the Brain Health Institute at the Cleveland Clinic for further testing. You will undergo cognitive testing and your partner will be asked questions (possibly in private) to confirm reported symptoms and/or observed behaviors. I am assuming you underwent a recent MRI of the brain and, hopefully, completed blood work. If there is any question about an underlying pathology, the "Brain Experts" may suggest further testing that could include a Pet Scan and/or examining the cerebral spinal fluid for levels of tau and amyloid, etc. Or, perhaps it will be a "wait and see". For sure, your previous head injuries complicate the diagnosis, and a referral to an expert who can hopefully thread this needle is appropriate under the circumstances.

That said, I get it. The referral itself is gut-wrenching. And if further testing is required, waiting for the results is beyond stressful. Deep breaths and all that. ;) It will soon be over, you'll have an answer, and the good people on this forum will be here to support you.

I too was just diagnosed with early onset Alz in July 2023. I had to leave my job - of 30 years as a pediatric nurse. I’m struggling with having a purpose. I’m hoping I have many more years before I go down hill. Anyone know what the timeline is like? Are any of you taking Alz medication? Does it work? Good/bad side effects? I have some fear with medications. Last week my family and I participated in My first Alz walk. Sure weren’t a lot of blue flowers. Pretty emotional for me. ✌🏽🫶🏽

Hi Lostinspace,

I also did my first walk for Alzheimer’s for myself and it was a little scary listening to the people on stage give their speeches as well as mine. I am taking donezipil too. My first neurologist said there was nothing that could be done for dementia but, I went for a 2nd opinion and the doctor put me on this. I have been keeping busy now and I feel better and not worrying as much. I do have those daily times that I have no idea what’s going on and this can take up most of my day so I try to push myself to get through it.

Hi everyone!

This is the new year and all are doing well!

I was in my forties when I struggling to keep my memory right from then I now know I have dementia but hope’s to find a cure.

I’m having trouble with my memory and mental health please help give this advice when I know things can get better 🙏