Focus on the Now, the Positive, the Moments
My name is Vickie B. I turn 50 in 4 days, and I've been living with younger onset Alzheimer’s since 2021. Have I cried? Yep- a few short times. BUT I have made it my mission to not stay/live in my sadness. I choose daily to see and find beauty and joy around me. And if I have a bad day, I give myself some grace. Honestly, because of the outlook I've chosen, my life has been better and more fulfilling then pre-diagnosis.
I share this in the hopes that other like me can shift their mindset. And it's not just my mindset that's changed. I exercise like I should have been doing for the past 20+ years. Daily walks, regular cardio and strength training at a gym, and a complete diet overload have radically improved how I feel, my moods, and my sleep quality.
I'm also active with the Alzheimer’s Association and fundraise for them. They've given me a platform to share my story, struggles, and positivity- I speak about my journey publicly as often as I can.
Finally, for full transparency, this past winter was awful for me. There were days I could barely get out of bed. I slept 9-10 hours at night and would nap during the day. I had a hard time motivating myself to even eat, not to mention prepare a full meal. It was rough, It was scary, and I hated feeling like that.
I'm not all sunshine and rainbows- but I am fighting for my life each and every day. Here's to hoping we can lift one another up and inspire a continued fight. 💜
Comments
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You are not alone;)0
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Keep going!
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Thank you sharing! I was diagnosed last year at age 54 and I too am living like I should have all along. Proper diet with lots of exercise. My relationship with my husband is stronger now than ever before. We'll celebrate 31 years of marriage this Summer. Grateful for whatever time I have, living each day!
Stay strong 💜
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Hello Vickie,
It's been a month since your post and hope you receive my comment. My DW was diagnosed 2 years ago with symptoms dating back to 2021. Today, she is 60 and living (as of 3 weeks ago) in an assisted living facility. I too maintain a highly active and healthy lifestyle which has been part of my daily routine for many years. I would agree this to be a major part in my personal well being.
"Fighting for my life each and every day" is also part of my day to day journey. Moving out of my role as full time care-giver has had it's own set of challenges. Nevertheless, like you, I choose life and am learning to manage those challenges accordingly.
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I appreciate all of your comments and positivity. The fight continues- 💜
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hello,
When I was diagnosed in 2021 I didn’t cry tears I was happy to be diagnosed with Alzheimer’s. Sounds morbid I know,but I had doctors tell me that I was faking it. I live life too. I don’t dwell on it. I’m grateful for everything. I’m having fun. I lost my license when I was 55 in 2021. So I sing the song by Sammy Hagar “I can’t drive 55.” I have always been positive and and very active. I changed my eating habits years ago. Things could be worse but like you say don’t dwell on it
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Hi, I am 42 and I’m trying to give myself some grace as well. I keep telling myself to just focus on making new memories with my family and just live life but when I’m alone I realize this diagnosis isn’t going away. It’s hard living this journey especially when my immediate family doesn’t want any outsiders knowing. Makes me feel like I’m in a box all alone.2
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Please find a way to impress upon your family that you need to talk about this. I hid my MCI for most of the 5 years I lived with it before my new AD diagnosis and it tore me up. When I did share it with friends, family, bosses, and coworkers, they were wonderfully supportive. Each time I thought to myself, "why didn't I open up sooner?!" Don't live in that box alone my friend.
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I wish I had your strength right now! I'm one week into my AD diagnosis and spiraling. I've always been very active and I changed my diet to a wicked healthy one about 6 years due to stomach issues. I'm fighting the "why bother, it's pointless" attitude right now on almost everything and can't even get myself out for a short hike even though I just finished backpacking the Appalachian Trail in June. I want to rebound soon and get out of this self-pity stage but digging in and learning more is depressing me further. Thanks for setting an example for me to aspire to!
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There is a lot of wisdom and strength in this thread. My DH was diagnosed at 54 & just turned 68. We allowed ourselves several days of "why me / us" time & realized that's not how we'd ever lived our lives. We were going to fight this ugly disease together and better yet we were going to enjoy being together. I realize that doesn't work for everyone, but at 14 yrs into this DH is doing great. Does he forget things, of course. is his attention span short, yes it is. And on and on. So we adjust our world around him.
Attitude, I believe it everything.
eagle
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Hi I just reviewed my PET scan with my doctor and she has confirmed I have early onset AD. I am a single parent and have been feeling anxious and fearful. I am 53 yrs old. Next steps is to do a blood test and then start the drug therapy. As many of you have mentioned I don’t have many symptoms. I forget things occasionally but then remember it in the next few minutes. The only reason I even had an MRI was due to a tremor in my hand. I am thankful that I did go to the doctor because it may have been too late for me if I let it go untreated. Nextstep is a blood test for the gene and then drug therap, any recommendations?I am holding on to faith and prayers to make it through this. Thank you all for sharing.2 -
Im so sorry it hear that your family dont want anyone knowing, its your life, your story you should be able to share it how you want. I am 46 and also have EOA its scary and hard its not something you can deal with alone trust me. Just know you are not alone!
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You are NOT alone, and what you are feeling is normal. When I got my diagnosis, I was relieved for a hot minute, and the "spiral" quickly followed. I have a card on my computer that says, "It's OK to be devastated….just don't live there". I promise there is still beauty ahead. I had to learn how to live in the moment and enjoy now. My turning point was when I realized that I am not alone, and this is a journey. The face of Alzheimer's is not the end stage. It looks just like you and me. It doesn't begin with the end; there is still so much life left to live. 💜
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Hi Vickie! You are not alone. I appreciate you sharing your story, including the ups and downs. I am so sorry that you have been affected so early in your life. It is not easy; however, there is hope every day. Keep pushing forward, and I am counting on the fact that there will be a cure one day. Thanks for your positivity and honesty, and for sharing your story. It brought me positivity and hope as I fight to thrive and live with it, too.
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I am in a rut right now, 3 weeks in from diagnosis. I am not feeling sorry for myself, but I feel resigned to where this is going. Your post brought the first smile I have mustered while reading about Alzheimers. Thank you.
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I think after a diagnosis of course you are going to be down and fearful for the future, after all you are human. What you have to do is to make certain that you don't stay in that dark place. Yes, its difficult, and yes more than likely there will be tears and some anger. Don't hold that back, let it go and then be done with it. Move on - to the here and now. Meaning what can you do to help yourself be your best self.
We all know that diet and sleep are important. Personally I believe communication and being with others is equally as important - its just not talked about as much. Exercise is important, but to moderation. Keeping your mind engaged is vital. It might be with word games on the computer, crossword puzzles, puzzles, doing crafts or models, etc. Try a new hobby - knitting maybe or gardening, use you imagination and find something fun you want to do. Woodcraft possibly?
You can take a deep breath and realize that you certainly aren't alone.
eagle
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I’m having a hard time lately. It seems like I am screwing something up daily. Forgetting appointments, losing my wallet, breaking my glasses, etc. I was diagnosed finally this fall after 3 years MCI, but it’s really hitting me lately. I’m also trying to get used to my new Cpap machine and our power has gone out 3 nights in a row due to windstorms, so disrupted sleep. My husband is also going through daily radiation therapy for several weeks, commuting back and forth 45 min each way and twice on Fridays. I genuinely feel like I can’t deal with this constant feeling like an idiot, and I know it’s just going to get worse!
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First off IngridS you are not an idiot. Let me repeat, you are not an idiot. Now, you repeat that to yourself until you believe it. Because its true. Your brain isn't functioning properly, its not functioning how you want it to function. You are frustrated and upset, of course and rightly so.
Disrupted sleep makes for a long next day. Put your CPAP on during the day and take a nap - get a good rest in with it on. Of course your worried about your husband and his radiation therapy - that's putting stress on yourself. Time for a step back and several big deep breaths.
Let take this one or two steps then when your comfortable, we'll add more. You said losing your wallet. Do you carry a purse? Even if you don't - when you walk into the house, immediately put your wallet/purse where it belongs. (On a hook, hanging on a chair, in the bedroom - wherever makes sense to you.) That's it. Now the wallet has a home. Could you possibly add an AirTag to help track it if it gets misplaced? (I know several women who have them in their purses and men have them in their wallets.) Its just a thought.
Just take care of that and that's a huge burden lifted off your shoulders. Its scary I know. We are here to help you.
eagle
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I am a retired Family Practice Physician diagnosed about 6 months ago at the age of 59. I am currently undergoing Lequembi treatment. I am finding my days are more enjoyable and valuable to me than they had been in years. I know this may sound strange but I am embracing my situation and have tried to change it into something meaningful. A friend and I have started a YouTube Channel called Friends With Medical Benefits where we are sharing our journey together. He has survived colon cancer twice and I am sharing everything from my challenges with getting diagnosed to my current treatment. We have just started but it has allowed me to continue my life long desire to help people. We are not doing it for financial gain at all, we both said if we can help even a few people or family members dealing with what we are going through or helping someone get help they may need ,we will have fulfilled our goal in starting the podcast and channel. I share this because, I feel many people I have interacted with, particularly with early onset, seem to have the same approach. Try to make the most of each day.
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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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