Recent Diagnosis
Comments
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Welcome to this online support group, Bluearmadillo. This truly is a devastating diagnosis. Although there is (yet) no cure, there are steps you can take to make your journey less traumatic. I hope that you and the other members can learn from each other and support each other.
Can you tell us a bit more about yourself? Do you have specific questions?
Iris
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Me, too. I'm a nervouse wreck. I reread “Still Alice” for the third or fourth time. I'm afraid for my future. I've told a few people & without exception, they've all said, “Oh, you're fine.” Or, “we all forget things.” I don't want to forget my husband d or my grandchildren. I'm scared, sad, depressed & thoroughly miserable. I am 70.
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I too was recently diagnosed, about 6 weeks ago. I'm in the MCI stage. I am taking donepezil and it has made an amazing difference. I'm happy that I feel more capable of handling my life, but horrified at knowing it will only last so long. I'm bouncing between a determination to enjoy every moment I can and to getting my affairs in order so as to not burden my loved ones hoping I will die before I am no longer me. I'm very interested in hearing what others are doing, or thinking in regards to these issues. Does anyone have other outlooks that might be helpful? I am scheduled to begin leqembi in mid August. I'm aware of the possible downside, but don't find that as frightening as I would have at another time in my life3
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Welcome Marion and Linda. Yes, now is a good time to get your affairs in order. You might consider Best Practices to prolong the early stages. Please keep posting because peer support is very important.
Iris
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thanks, Iris.
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Blue, I was diagnosed with vascular dementia about 6 months ago. The doctor put me on Aricept. Then the depression hit and I wound up in hospital for two weeks. I am now on Aricept and Namenda for brain health and Zoloft with Remeron(for evening use). My latest visit added Risperdal for my 'sundowning' which has just surfaced recently. It's a lot of stuff to keep up with, but you cannot give up on this thing. It's a terrible diagnosis to be sure, but we must always have hope and faith. I"m glad to write back if I am able. Some days are better than others for me- but that would be so with or w/o this thing. Wishing you all the best. James
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what do you mean Best Practices? Are you referring to something in particular, a guideline?
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I think this is a good place to be & to share. At least I hope so.
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Think I read a post Iris made that listed some of the best practices. You can always just click on the magnifying glass icon beside the bell up top and type in best practices. Bunch of stuff- lists, ect should pop up. 😊
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Mary, Best Practices are lifestyle habits that many PWD use to improve functioning and to prolong the early stages. Please look for my thread about Mimi S, because she was the person who most promoted Best Practices.
Best Practices include:
--taking medications as prescribed
--eating the Mediterranean diet, wit fruits and vegetables for antioxidants, and fish and nuts for omega-3 fats
--exercising vigorously to tolerance
--continuing to stimulate your brain with activities and new learning
--continuing to socialize.
PWD should also get restful sleep, avoid stress, and consider alternate or complementary therapies, if interested. There are a few threads on aromatherapy.
Iris
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Linda,
I am also in the MCI stage. I am trying to find a balance between getting my life in order and enjoying the present. After both my parents died of dementia, I went to a lawyer and had estate planning done. I am working on getter rid of things in my house I no longer need. I was forced out of 2 careers due to cognitive issues, so I no longer need the professional stuff I had. I don't want other people to have to go through tons of stuff like I did when I cleaned out my parents house.
I am also taking time to travel while I can. I have gone on 2 vacations this year with my husband and 1 by myself to a retreat center. I figure I might not be able to do the solo traveling much longer but want to continue to travel with my husband with adjustments. I am no longer up to freeway driving so we will fly places rather than drive if they are far away. We went to the Candian Rockies last fall for my bucket list trip. We drove over 5,000 miles. I am so glad we did it when driving was easier for me.
My advice would be to schedule both the fun stuff and the not-so-fun but necessary stuff like legal planning, decluttering, etc. so you accomplish both. I have always been a list maker, but now they are essential for keeping me on track. We recently took a trip with another couple and it was great. Now, I am spending time at home clearing out stuff on days I don't do volunteer work.
Erin
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> @"Iris L." said:
> Welcome Marion and Linda. Yes, now is a good time to get your affairs in order. You might consider Best Practices to prolong the early stages. Please keep posting because peer support is very important.
> Iris0 -
Iris, I am a caregiver. What are 'Best Practices' to prolong the early stages? Thank you!0
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ThomKett, see my post above on July 10, where I describe Best Practices.
Iris
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I was diagnosed a year ago and I first was very depressed. I don't think I have deteriorated much this year. Mainly I have short term memory loss. I think staying active is helpful. I hike, paint, get together with others . so I am happy about that. I know it is harder on my husband but we have frequent discussions of what might be helpful.
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Thank you for the welcome. I’m 77, a retired professional counselor. I read a lot — all kinds of things. I’ve depended on my wits all of my life. The thought of dementia is terrifying. I know it is for everyone. A primary fear is losing my memories, especially the more recent ones. I have a wonderful partner. We have been together for 34 years. She is very strong and supportive, but I worry about the effect my diagnosis has on her.
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Blue, you were a counselor. How did you counsel clients to approach fear of the future? Are you on medication to help your memory? Are you following Best Practices? Are you making legal and financial preparations? There are a lot of things you can do to help yourself. I hope you and the other new members continue to post and support each other.
Iris
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I did some counseling too at a homeless shelter
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Hi, Linda,
I'm glad you started with Donepezil so early. I started taking Donepezil later in my disease and it seems to slow things down but not very much. I do feel like I am not getting much worse, so that's good.
I am also avid about exercising (Zumba is great because it makes you cross the two hemispheres, which allegedly helps the brain (I don't how…). I also work with an acupuncturist, who has been very helpful. I also am going to learn Spanish because learning will strengthen my brain. There are also some very easy yoga exercises (from this website) that seems to at leasts calm things down.
https://alzheimersprevention.org/research/kirtan-kriya-yoga-exercise/
Keep the faith and make keeping yourself heathy your most important job.
Maura
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Hi I started on Donepezil about 6 months ago and my wife says she can see a slight improvement we know it won't stop my ALZ. I take searaquil to stop me from having NIGHTMARES. I also do 2 exercise classes a week and when possible go the gym once a week.
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I came across this post. I’m a caregiver. My mom is 72 with ALZ. I have a 4 year old and my dad, her husband, passed away 10 years ago. I came here to share something I came across in my research that I wish I had the time/access/support to get for my mom. For reference, my background is in the medical field. Im intrigued by this research and I think it’s something worth checking out - regarding mushrooms and Alzheimer’s.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10384108/
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In the spring of this year, my wife received a diagnosis of MCI with Alzheimer’s pathology. Bluearmadillo, we have very similar feelings to the ones you describe. Luckily, my wife was already seeing a good therapist who she sees often. We also have a lot of good support resources recommended by our neurologist’s office. So we’ve been attending a support group virtually and that’s every other week. We have found this discussion board informative but my wife pretty much stopped looking at it after a while because there is a lot of information that is pretty scary and it was just contributing to her anxiety. I still review posts here and have made a few myself. There are definitely things you should do to prepare for the future like legal arrangements. And like Indigal said, do the enjoyable fun stuff too.
Blue, you mentioned your partner and your concern for how that person will be affected. My wife is also worried about me. I reassure her that we are in this together and a team. I admit that I know that it will be hard. I also remind her of all the support we both have. In an odd way, this diagnosis has brought us even closer together and we are doing more new things together than we were doing before.
So I hope you find these suggestions helpful. And here’s an article I read recently about modifiable risk factors. It mentions the same things Iris posted. It’s kind of frustrating for my wife though because she already lives a very healthy life. The only thing we can identify on the list for her is TBI. She’s had several over her lifetime and I really think that’s the one factor that’s the main contributor for her diagnosis.
Dementia prevention, intervention, and care articlehttps://www.thelancet.com/article/S0140-6736(20)30367-6/fulltext
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I was diagnosed several weeks ago and started Memantine. I have very few symptoms but would like to connect with other Alzheimer’s patients
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anyone here?
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Guess not
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I’ll stay on or just check in
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Would love to chat with someone
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I am here to chat.
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hey Richard here . How are you?
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Got your comment and sent back
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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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