New, Scared and Confused...
I'm obviously a newbie to this site, as well as the amazing and mysterious world of Alzheimer’s. I began seeing a neurologist last summer because of an inability to think as clearly as I once did. Memory didn't seem like much of a problem since as far as I can remember, I always had a bad memory.
Other issues that I noticed was a decreased sense of navigation and a growing difficulty with finding words. Mostly though, I'm finding that my trade skills are diminishing. In fact, I'm scared to death to go to work.
I now have an appointment with my neurologist on Thursday. He’s recommending that I begin Leqembi treatments, and that scares me more than going to work. I understand that it may give me some extra time, but the cost, the frequency of treatments, and the possibility of micro bleeds and even fatal brain hemorrhages make me wonder if it’s worth it.
I’m hoping to find someone I can share my apprehension with. I’ve had and even helped care for various members of my family that have died with AD. I’ve seen what it does! And, I very much don’t want to burden my family with this. Only my wife knows, so far.
Eventually, I realize that I’ll have to open up about it, but I have so many things to do first, like how much longer can I fake being the same tech monster I used to be at work. Should I take an early retirement? If so, how will I pay for everyday issues with having AD and still be able to leave something for my wife after I’m gone?
Now, let me apologize for this whining. It’s not something I’ve done very often (nor shared so much with others), but for the first time in my life, I’m really afraid of the future.
Comments
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Tim, everything that you're going through I have been through the same things I have been through since I was diagnosed last November. I am going out right now but I will get back to you later and tell you what I've experienced.
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Tim, I saw a Neurologist (for something else ) and he is the one who diagnosed me with ALZ . I have trouble finding the right words when talking to someone. I understand why you have not opened up about you ALZ. I also felt that way but once I came out of "the closet" about my ALZ everyone has been very supportive. And no one treats me differently (which I was afraid of) My wife is very supportive of me dealing with my ALZ. I hope that this has helped. I do not know what kind of experiences you have . Me I have hallucinations one night I woke up and di d not know my own bedroom and the floor looked like a lake. Like you I am petrified of what the future holds my wife says try not think about the future (it is something you cannot control) . If you want to vent I am willing to listen.
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Welcome Tim. I hope you and the other members will be good support for each other. You say you are faking at work. Have your colleagues or supervisor commented to you about your work performance? Have you had any warnings? It is possible for some time you might request work accommodations. Www.askjan.org has information on work accommodations for various disabilities.
But eventually you will have to withdraw from work. It is wise to plan for your financial support. Have you given any thought to this?
Iris
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I'm pretty new. I'm taking Namenda & have started Leqembi infusions. If Leqembi will keep me from getting worse, I think I will be happy. I'm already un-employable. I feel like I'm fighting for myself, to continue to be at least part of myself. You may ask me about Leqembi & I will do my best.
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Hi David... Thank you for your reply. Sometimes I may take a while to reply. I'm still working. I work nights, (because I choose to). I also work twelve hour shifts. My days off are mostly spent seeing various health professionals between sleeping. So, I stay fairly busy.
Since I haven't turned 65 yet, not much in my life has changed. However, I do plan on filing for Medicare in April, as well as looking into an early retirement. My social security vested retirement date is still almost two years away.
Yesterday, my doctor started me on a precription for Namenda. I'm already on another pill, but I forget it's name. Anyway, since we live pretty deep in the woods, it's hard to get to the pharmacy. So, I haven't taken the first Namenda pill yet. That should happen tomorrow. Have you had GI issues? And if so, were they bad? I'm only supposed to start with half a pill.
Since I had so many questions and reservations about the Leqembi, my doctor and I decided to wait until my next visit in four months to discuss it at further length and see where that other new drug like Leqembi is going. So sure, tell me all you can about Leqembi.
Hope to hear from you again.
TIM
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Hi Iris, and thanks for the message.
I'm not showing any apparent symptoms yet. It's still very early, I guess. However, I do notice that I forget things more often. I've recently taken up using Google maps and tend to loose words when I've had a tough night at work and I'm physically exhausted. I realize that those things are typical for most people, but new to me. I may have always been forgetful, but these days, I will not go out on the lake or into the woods by myself and I can put up with the frustration of losing words.
I will apply for Medicare in about a month and a half and look into early retirement. I'll be 65 then.
As for work, I'll have that discussion with management about the same time. I'm still fully functional and did well on my last couple of mini-cognitive tests. But yeah, I will need to have that conversation at work. And, I will definitely check out that askjan.org website.
Now, let me thank you. You've been very helpful and hope to learn more from you.
Tim
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I was started on Namenda last year. I was finally approved for Leqembi at the beginning of this year. Please feel free to ask me any questions
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Sorry, Ella. I'm still getting used to this message board. I now realize you're someone else. I'm feel s embarassed.
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Please, don't anyone feel embarrassed or that you are whining to come here for answers or for support. That's what we're here for!
Iris
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Tim I was embarrassed at first but then I realized that there are other people just like me(and you)who are there to help us along the way with this disease. I find comfort knowing I am not alone. So if you need to talk or just VENT go at it. Hope to hear from you soon.
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I've not had any side effects on Namenda. We started talking about Leqembi, maybe in August 2023. All the ducks were in a row at approximately the end of December 2023. I had paperwork. The Neuro team had paperwork. The company that makes Leqembi has a great website. I had my 1st brain scan in August 2021. My next in August 2022. We moved & all the medical stuff changed. Then it was 2023 before I could get in to see a Neuropsychologist. Then I went back to the Neuro. This is part of my story. Nothing happens quickly. Start the ball rolling. Hope to encourage you!
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Tim, no I not have Any GI issues yet. So far the only thing I have hallucinations and I have little white "ghosts" that seem only to,"visit "me when I am sitting in my chair at night. My wife calls them my "Guardian angels".
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I have a rare form of Alzheimer's known as PCA . I decided not to go with the new drugs And go on Trips and experiences that my family and myself can enjoy while I'm still here . The odd thing I find is that I am not scared and I don't understand it . It may be because the doctors messed up the diagnosis originally and I spent a time worrying about it before I found out what I really had. I hope you have someone you can bounce things off so you can decide what would you really need to get to do
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Tim I hope you are learning to accept you diagnosis I'm still having a hard time to accept mine. My wife tells me to take one day at a time but that's easier said then done. I don't know how I would survive without her help. On another subject I am going to have a test to see if I have Parkinsons also. Please pray for me. David
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Tim I am taking Namenda, started it at the time I was diagnosed 2022 I think. I take one pill twice a day and have not had any GI issues. I have Crohn's also so I was scared about the side effects as well. Like you my husband and I took some time being the only ones who knew. When we were ready we told our kids and some time after that we told our family members. I hope you are able to find a plan that will work for you regarding retiring. I wish you the best.
Zee
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Hi David. I can appreciate that you’re having a tough time accepting a diagnosis like this. Everything you thought your future was going to be has changed; replaced with both uncertainty on the one hand, and the unfortunate certainty of Alzheimer’s relentless “progress”.
Are you able to isolate some of the reasons you feel the way you do? Doing so may help lessen some of the fear or “sting”. How long ago was your diagnosis? Possibly you think you should have accepted the diagnosis more quickly, and need to give yourself more time.
Is this common in your family history? If not, that could be a major reason you feel this way. Of course if it is, it would be natural for you to be at loose ends because of loved ones you have seen go through it.
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Hi,I was diagnosed last November. There is no history that I know of in my family. I'm finally realizing that I have to live with it. My wife is really being good to help me deal with it . I have anxiety which doesn't help.i get anxious at times with crowds. At times I feel like the walls are closing in on me .Everyone says take one day at a time but that is EASIER SAID THAN DONE. All my family and friends do not treat me any differently which is the way it should be. Thanks for letting me rant. I do not know what my"stings" are all I know is that I get the feeling (for unknown reason) is that the walls start closing in around me and I get scared and my wife calms me down.
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I was first diagnosed in 2023, I have had mri and ct scans, and my neurologist can not determine what I have. I have another CT scan schedule for April and based on those results I may be accepted into the lecubi treatments.
,
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Hi energizerbunny and everyone,
i am not on the new medications due to other health issues that would increase my health situation in a serious way. I take Donezipil/Aricept for EOA. I have been diagnosed in 2021. I am not that scared since I am the 3rd generation to have this “monster.” I really worry about my grown children and grandchildren. That’s my biggest fear. Last night I must have had some crazy dreams that i literally bit the bottom of my inside mouth. I spoke to my daughter about this and realized the crazy dream was about her.
I had many plans to do in life as well, but I have not worked since 2018. I started having memory and word finding issues back then, but then I would call this sometimers, jokingly thinking I won’t get this disease I take care of myself. I am healthy. Surprise!
Have you tried some probiotics if you have any GI issues?
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Welcome Ed. How were you diagnosed? What were you diagnosed with? Are you making plans for your future?
Iris
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Hi Tim,
You're about my brother's age, and he is just starting his journey with dementia. I hope you don't mind if I offer you some of the same things I've shared with my brother.
1) Make sure you talk with someone smarter than me to verify the accuracy of the information I've found.
2) It is likely a dementia diagnosis will qualify you for a SSDI disability retirement. If you go in to your Soc Sec website they will show you what you will earn if you retire now, or if you retire a full retirement age. You may have to file an appeal to get it, BUT look at that full retirement number. It is likely you are eligibile to get that.
3) See if you can get FMLA or short term disability from work while you try to get your financial ducks in a row before making the retirement decision. Rather than just taking the Soc Sec retirement commencerate with your current age, see if you can get SSDI disability retirement. That will pay you in an amount equivalent to that of your age 67 full retirement. That will be in an SSDI check. When you turn 67, the government will start drawing your check from another bucket and that will be your Soc Sec pension check.
4) Figure out what this means for your medical coverage. Those on SSDI typically can get medicare "early", but being so close to 65, by the time you qualify for early by being on SSDI so many months, you'll be about the right age for Medicare anyways. Have a plan in place for bridging that time.
And as a side note for the peace of mind of your love ones, make sure you take your phone with you when you're out and make sure the locator is on. Also, consider getting a "Tile". There is a fob you can put on your key chain, and a devise the size and shape of your credit card you can put in your wallet. These will help you find them within your home if you misplace them...and will help your sibs find you if you are ever misplaced : )
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Tim Since I last talk to you I saw my doctor today to see how I am doing with my CPAP. I will see my neurologist on May 10 to see if I have Parkinsons and I will let you know the result. Since I have ALZ my mind is mixed up Last week I was an hour late to my heart doctor and since this is not the first time(I have been having trouble with my finances)my wife now handles my finances, my meds , and now my calendar. I know my wife loves me.
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Hi Tim
I have early onset Alzheimers at 57, just diagnosed, and is terrified. I live with my youngest kid who is 22 and havent even told anyone yet, the thought of my kids having to deal with their mom with Al is my worst nightmare right now!
I just saw you have been diagnosed with AL but also being tested for Parkinsons.
My father has Lewy body, which started with forgetfulness and hallucinations and being unable to do jobs he was very good at.
What Im getting at is has anyone suggested you have Lewy body - it has many of the same symtoms as Al and also as ParkinsonsBest wishes
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Yes my neurologist says Lewy body but wants me to be tested for Parkinson which will happen on May 10. Will let everyone know the results .
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Hi everyone I have not forgotten about my possibility of having Parkinson's I am going May 10 to get the results of my test and I will let you know the results and I hope that it is negative Oh I just found out that I have restless leg syndrome also.
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Restless legs syndrome can be associated with low iron levels in the body. Your doctor can check your Total Iron and Total Iron Binding Capacity, simple blood tests.
Iris
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Hi everyone today I'm to the VA and hopefully I will becoming home with a new rollator and a new cane because I'm so tall the one I bought myself os not tall enough. Next week I go to find out if I have Parkinson. Please pray I don't not have Parkinson.
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Bonjour ! je suis de tout coeur avec toi ! ce soir je prierai pour toi ! mais si on te dit que tu as la maladie de Parkinson; c'est dur à accepter le jour où on te l'annonce, par la suite dans les mois qui suivent tu accepteras ! pour ma par c'est ALZHEIMER et quand on l'a annoncé ce fut un catastrophe pour moi! maintenant cela plus de 5 ans et je maintien tant que possible ma mémoire ancienne! Avec l'aide 2 fois pas semaine de l'orthophoniste et 1 fois par semaine 2 heures en groupe un d'atelier mémoire à l'association ALZHEIMER DE Montpellier. Courage l'ami !
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Bonjour ! je suis de tout coeur avec toi ! ce soir je prierai pour toi ! mais si on te dit que tu as la maladie de Parkinson; c'est dur à accepter le jour où on te l'annonce, par la suite dans les mois qui suivent tu accepteas ! pour ma par c'est ALZHEIMER et quand on l'a annoncé ce fut une catastrophe pour moi ! maintenant cela plus de 5 ans et je maintiens tant que possible ma mémoire ancienne ! Avec l'aide 2 fois pas semaine de l'orthophoniste et 1 fois par semaine 2 heures en groupe un d'atelier mémoire à l'association ALZHEIMER DE Montpellier. Courage l'ami !
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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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