Just diagnosed
Comments
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It seems that alzheimer's is the most feared disease including cancer. I felt very scared when first diagnosed, had a complete melt down. It's been almost a year now, and I am doing ok. The fear has turned into acceptance, and just hoping and praying that I stay where I am for a long time. I am an 80 yr. old lady, and the thought of being diagnosed with Alzheimer's NEVER crossed my mind before the CT scan MRI, and all the other test. I am doing ok today. Just remember that you can stay mentally ok for an unknown period of time. I do understand your fear & concerns. I have been there, still am on a much more acceptable level. Keep the faith. Faith in God is important to me. Take care of yourself and wishing you the best.
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An Alzheimer's diagnosis today is not how it was when my mother was diagnosed many many years ago. There were basically no treatments, therapies etc. Today it is TOTALLY different. There are meds for symptoms ie memantine, etc intervention type treatments like Leqembi and Kusunla in addition to all kinds of social support groups and agencies. I am 68 and was diagnosed maybe like 4-5 years ago and I feel more cognitively alert and confident then I did then. Yes! It is a scary diagnosis but not as it was say just 10 years ago. Please find yourself a great neurologist that specializes in Alzheimer's and related diseases. They will help guide you thru your journey. I am glad you found this website. Please feel free to share with us regularly on how you are doing and if you have questions. I have found this group has a wealth of knowledge. We have all been thru what you are going thru and are here for you. Just reach out. Big hugs to you.
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I too was diagnosed about a year ago. Yes, it was a huge shock. But I've learned from others with the disease and from very good neurological and health professionals that there are things you can do to go on and continue with a fulfilling life. If you haven't already, finding the professional help you need is critical. And, with their help, there are steps you can take to ease the symptoms and, if you choose, slow the progression. And there is more on the horizon. Lots of research in process pointing to the likelihood of letter treatments. And there are things that you can do pretty much on your own, that is to say without a lot of help, because how well you do will likely depend among other things on your health in general. Keeping your blood pressure down, moderate alcohol consumption, exercise (both your body and your brain, e.g. by learning something new), maintaining social contacts, treat your hearing loss (yes, most people your age— and mine — have some, whether or not they recognize and are willing to acknowledge it), get some sleep, moderate your diet (e.g. more veggies and fruit, less red meat), and stop smoking (if you do). The other thing is looking to the future, including (as you mentioned) future needs for care, and what that may mean for your family and for your finances. That's something all of us in our 70s and 80s should be doing whether or not with an Alzheimer's or other diagnosis, but many don't. What's available in your area? Most probably there are resources. What are your care preferences (and reasonable expectations) of those close to you? These are all things that I too am now engaged in. And I'm finding that there are resources out there. Should have been thinking more about them before my diagnosis, but like so many others I had the illusion that there was unlimited time. Hope this is of some help.
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The fear of going through what your mother went through is completely understandable but dementia care has changed significantly even in the last decade and there are more support systems, resources, and early intervention options available now than there were for her. Your daughters love you and people have a remarkable way of finding solutions when someone they love truly needs them, even when it feels impossible from where you are standing right now. You are not your mother's story and you do not have to carry this fear alone.
I got some of my references here:
https://hopebridge.care/yakima-families-searching-for-compassionate-dementia-care/
https://en.wikipedia.org/wiki/Dementia_caregiving
https://nurseslabs.com/dementia/
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I think those are very natural reactions. Have you looked into an ALZ support group? There you would get the support you need and be with others who understand exactly how you are feeling. Try looking up ALZ Assoc or call the ALZ Helpline at 1-800-272-3900. They might be able to point you in the correct direction.
eagle
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I tried Aricept, couldn't take it. I was close to starting the Lilly's infusions until I realized that I would be paying a large amount of money even after the insurance. Well, that turned out to be a blessing as it's a year later, and I too am doing fine. I am curious about the ones who are getting the infusions & say they have no progression after a year, neither do I without the infusions or aricept, therefore, how do they know. I know Ely Lilly's must be making some big money off all of this. Yes, they have invested alot, but pharmaceutical companies know what they are doing. God bless everyone who have gone through the trauma / shock of hearing this diagnosis.
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Hi Dorse
I hope you are doing well.
Regarding infusions. I am on Leqembi infusion and you are right, the are very expensive!! Mine were going to be over $400 for each, and i could not possibly afford that.
However my Dr. coordinated with and entity called EVICORE. Here is their web address
https://www.evicore.com/
They have programs that pay other entire cost of every infusion but I believe that your Dr. needs to initiate contact. I am going for my 17th infusion and have not paid a dime. I would encourage you to chat with your Dr. as soon as possible to get ball rolling I am pretty sure I did not have to do any paperwork, it was all done by my physicians office. Please feel free to reach out if there are questions.
GE
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Thank you GEH, I am doing well at this time, therefore, I think I will just hope / pray that I can continue on this path.
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Hi..My name is Nancy. I am 76 and recently diagnosed with early onset Alzheimers and I have began infusions.
I would like to start a support group of people that would like to talk about our lives living with early onset alzheimers. How people may look at us, their reactions and how remarks made regarding our diagnosis could affect us. And any other things that effect our lives. I feel that we need to bring this diease out of the darkness. The diease can be found in a blood test. Lets help each other and help educate friends and family.
Does anyone else have interest in this?
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Yes, I was thinking about starting a group myself but haven't found how to do it yet. I also recently found out that I have Alzheimer's. I am 73.1
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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