Coping

Stacy318

Hello Im 50 years old female and just found out I have Alzhiemers. My question is what are some ways to accept the diagnosis, cope and deal with it. I am highly depressed, worried and my anxiety is through the roof.

Thanks!!

Stacy

Iris L.

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

Stacy318

Iris, thanks for responding. Im trying to stay active and busy in my yard. Switched to a mediterean and lots of green veggies diet. I have been reading "The first survivors of alzheimers" journaling...taking donepizal and zoloft for depression and anxiety.

Janutt

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

jglehman

Hi Stacy,
While I am sorry to hear of your diagnosis, and struggling to grapple with my own, it is nice to know there are others out there who can relate. Thank you for posting! I too am 50, first time posting and new to the group, and have been dx with MCI and go for testing at Cleveland Clinic's Brain Restoration Institute to determine what type of dementia/Alz I have in Sept. I am also experiencing seizures and will see an epileptic specialist as well, and lastly, I have been diagnosed with Trigeminal Neuralgia (TN). I'm atypical because of brain injuries the doctors believe connect all three of these diagnoses. Like you I find myself scared and somewhat depressed especially in the evenings because my life has suddenly changed in the last year. Gardening, walking, routines, diet, painting - which is new to me but really seems to calm me- and cognitive and neural therapy (learning organization and pain management strategies) seem to be helping. Gentle yoga and meditation remind me to stay calm. Brain activities in the morning. And while I hate taking medication, I have found the following useful: mematine (MCI and suspected Early Onset), carbamazepine (TN and seizures), and gabapentin (TN), and duloxentine (anxiety). And just when I think I have a "managed" life, I completely fall apart with anxiety, sadness, and fear. Cry. Let yourself cry. I do often. I take naps which isn't typical of active me. And I celebrate the moments of clarity, joy, and living. They seem much more poignant to me now- and I think that is the gift of this disease.

Figuring out how to accept who I have become - especially in relation to my husband and daughter - is my challenge as they now see the me they loved for years fading away.

How do we capture the time we have left? How do I prepare for the time I don't have left? It is incredibly hard. My anxiety was through the roof the first two months. Through the roof! I'm on month three of learning all of this. And joining this group for the first time today was hard, because it meant accepting this is all real. Boy am I glad I finally connected with these discussions. Reading your post helped me feel not so alone and sad and anxious, thank you! We got this!!!!

klucey

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.

Iris L.

I caution you new members with a diagnosis of MCI not to get ahead of yourselves by stating that you have dementia. There is no clear line between dementia and MCI. A goal is to prolong the early stages. Do all you can to investigate medical causes of dementia mimics. Follow Best Practices. Monitor yourself. Make your life easier and get your affairs in order. Then, after a while, you will be better able to know what's going on with you. Maybe. Or you may not. You may still have unanswered questions. But some questions will be answered.

Iris

jglehman

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.

Iris L.

Jglehman, everything you wrote in your post is how I would answer your question. Your doctor referred to a "wide umbrella". I say that Alzheimer's is a rule-out diagnosis, after every other possible cause has been ruled out. That's why I believe it is important to search and to get a second opinion with specialists in dementia. This is because the diagnosis is not made by just one test. Several factors need to be considered.

It is said that a definite diagnosis can be made only after autopsy or by brain biopsy which most people don't have. Even with a presumptive diagnosis of Alzheimer's Disease, the patient must exhibit a decline over time. The ironic thing is, we can never predict. There was a famous Nun Study. Some nuns seemed to have dementia. After autopsy, some nuns with clinical dementia had normal brains. On the other hand, some normal nuns showed signs of Alzheimer's Disease in their brains on autopsy. What does this mean? It means doctors and scientists don't know enough about AD to diagnose it with 100% certainty.

What does this mean for us patients? For me it means what I said above, don't get ahead of myself. Don't jump to conclusions. Investigate and get a second opinion. (I personally got a second and a third opinion.) Take what healthful steps seem reasonable to you. (Best Practices.) Prepare yourself. But don't scare yourself.

If, after everything, you do turn out to have Alzheimer's Disease, you can be satisfied that you left no stone unturned. You will have time to make decisions and to make your wishes known. You and your LOs (loved ones) will have time to make adjustments and to appreciate the present. These are the principles that I have learned from many of the members who have been here before me.

Jglehman, you are taking the right steps. Ask a lot of questions. I also have an autoimmune disease, systemic lupus, also anticardiolipin syndrome. I and my doctors believe my cognitive impairments are due to a combination of several different medical factors. This has taken lots of medical visits. I didn't give up. My personal advice to you is, don't accept a diagnosis of Alzheimer's until you have to. This is my personal opinion, others may think differently.

Iris

BadMoonRising

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.

Amy Joy

I was near your age when I first found out I had dementia. I have family history of dementia and now I’m needing more help. I continue to have other health problems and I’m in heart failure. My health choices are made by family member. I’m in care of my family for now. I will soon have to be in nursing home

lostinpace

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. ✌🏽🫶🏽

Iris L.

Welcome to this online support group, Lost. You say you are struggling with having a purpose. You seem to have already begun a new purpose, and that is raising awareness of Alzheimer's Disease, especially Early (or Young) Onset Alzheimer's Disease before age 65 years.

The first thing that I think is important is to make sure that dementia mimics have been ruled out. If this is the case, know that every PWD (person with dementia) has an individual course. There are steps you can take to make your journey less chaotic.

The timeline is also variable, can be up to twenty years. But PWDs with a certain genetic diagnosis may have a more rapid course. Did you have genetic testing? Do you have a family history of YOAD?

I myself have a diagnosis of cognitive impairment not otherwise specified. An Amyvid PET scan showed that I do not have Alzheimer's Disease. I have been using two memory medications since 2009 with no side effects after the initial period. Have you been offered medications?

It's good that your family is supportive. Are you all discussing plans for the future? Are you getting disability payments?

Please feel free to post whenever you like. We can support each other.

BTW, I was a pediatrician in my career.

Iris

Janutt

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.

Mimi50

https://alzconnected.org/discussion/comment/177475#Comment_177475

I am so sorry about your diagnosis. Since you live alone you must be scared when you get confused. My husband has dementia and I am his caregiver. He got confused but I was here to help him. Do you have friends that can help you?

Amy Joy

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 🙏