Hoping to Start an Ongoing Conversation Space for Those Living with Dementia

Hi,

I was diagnosed at the beginning of the year and I’m still trying to figure out how best I can organize things for my family (mainly my husband). I have unfortunately not found great support within the medical field. Quite a bit a misinformation has been given to me. I rely on the Alzheimer’s Association for guidance but I fear when I won’t be able to process things

thanks Kerry. Do you mind sharing the invite again? I did not receive.

Hi Kerry,
I would be very interested in ongoing conversations . I was diagnosed 2 years ago, and have not had the chance to talk with anyone else who is experiencing the same as me. It would be nice to not feel so alone, it is difficult to try and only talk with my husband about how I feel or think when it comes to my diagnosis. I am still trying to wrap my mind around it myself, let alone try to comfort family members. I look forward to talking with you more.

Thank you,

Lori

Hi, my name is Sheri and I am new here. It took me awhile to do this as I get easily overwhelmed. We think my symptoms started over 10 years ago but symptoms started worsening in the last 5 years. I have difficulty with reading, understanding directions, short term memory, recently I did not recognize 2 people from my past. I asked them both to tell me how we knew each other and I remembered one but not the other one. I get easily overwhelmed, irritable and at times angry which is not me at all. Sometimes I cry and have no idea why I am crying. I difficulty with technology which never used to be an issue. I have had to give up driving as I was having a lot of confusion with driving and almost hit a pedestrian. Let me tell you, that was the hardest thing I've ever done as I am very independent. I had to retire from nursing before I wanted to because of my symptoms. I now have anxiety which I never had before and have lost a lot of my self confidence. My family is somewhat helpful but do not want to talk about the disease or changes that have been happening and get easily irritated with me. They perceive that as being negative so I feel alone in my own house. I have wonderful friends who do listen and converse with me and help me work through things. It feels like Some days I am great and other days not so great. Symptoms are worse with being tired, overwhelmed, or anxiety. I do my very best to live everyday with joy and am making memories while I can. I take a lot of photos and do look at them regularly to help me remember these memories.

Hi just checking in. On a lighter note from my original post I am grateful for this group!!! Thank you for the helpful information. I did the bloodwork insurance paid for and it was used along with PET and MRI to confirm Alzheimer's along with symptoms Memory loss, cant find words, anxiety. Also shows brain swelling. Brain bleeds and Focal epilepsy. Which was not there before. My family is handling the best they can. I am processing slowly. I want to end on a positive note I am a Bulldog Mom we are currently empty testers. I have 3 girls 1 boy and 6 grandkids. Our English Bulldogs that keep me busy at home our newest one has only been with us 2 months we named him rex....I keep calling him Max!!! Poor guy LOL

hi, I’m Mike. I was diagnosed with EOA in March this year - I am 53. My wife and I told our adults kids about a month after the diagnosis. And I just told my family last week. Everyone is sad, but they will be good support.

I too have problems finding words. Harder to talk when I start a conversation vs when I answer a question. I’m still working currently, but anxiety and depression still sneaks in. On meds to tamp it down, but not always effective.

I’m glad I have people I can reach out to see how others may deal with this.

I’m not very good at how these discussions weave in and out. Hope I didn’t step on someone’s earlier comment.

Thanks

Mike

Thanks, Sheri. I will try those out!

Mike

Hello,

I’m Scott and was diagnosed with mild cognitive impairment last Fall. Was 55yo at the time, now 56. Head MRI showed amyloid plaques. The traditional healthcare system with its numerous gatekeepers and dysfunction has been the biggest challenge for me. After a long period of radio silence from the doc that diagnosed me (1 of the designated ‘Alzheimers Centers of Excellence’ in New York), I decided to explore other options and clicked a link on alz.org to request a list of clinical trials to get involved with in my area (NYC metro). The list had contacts and info to learn more about each clinical trial. From there, I was able to prioritize my preferences then began reaching out. The first clinical drug trial I touched base with is evaluating Trontinemab. I met with the clinical trial team several times, had several scans and appointments and overall it’s looking like the window will open to join the trial. Right at the end of all this, The ‘Alzheimers Centers of Excellence’ I’ve been working with here on Long Island reached out to share they finally got Kisunla approved (they asked for Laqembi but were unsuccessful getting it approved through insurance).

In all the delays, I’ve had time to read, understand and evaluate which fork in the road to take: 1) anti-plaque (Laqembi&Kisunla) or 2. anti-tau (Trontinemab). As I’ve continued to read about brain plaques, it seems they are more the result of rather than the cause of alz. That said, I’m leaning more into the science of tau clearance vs. plaque clearance and will likely move forward to join the trontinemab clinical trial if offered to join.

Re: SSDI, appreciate the info Sheri! I applied a couple months back and my application seems to be making its way through their system. When I login into the social security website, it informs that these applications take about 125 days to be processed in my area. If approved, I believe I read that the funds are retroactive back to when I actually applied for the SSDI. In my outreaches to into their office for questions, I’ve been pleasantly surprised how kind and helpful the Social Security staff has been.

Kerry, this is Emily. I was diagnosed with EO in August of last year after going through several tests to confirm the diagnosis. I have been very frustrated not being able to find a support group for people with EO diagnosis to share thoughts, feelings and frustrations. There are multiple sites and groups for caregivers but not for people that actually have EO. I am fortunate to have a very supportive family and husband who have done so much to help me in the initial stages of my diagnosis. I have been very active in working out and exercise. Joined my local YMCA and take tow to three classes a day which makes me feel so much better. If you want to form a group I would be very interested in participating. Emily

My Neurologist suggested I get myself on Medical so I could receive Kisunla! I was able to do so even though my S.S. is over $2000.00 a Month. Hope this helps

Vicki

I would highly recommend getting a lawyer. They can’t charge up front and they only get money if you get approved. I don’t remember the percentage but it was worth it to me not to have that added stress. Even doing that it took more than a year so start early. They back pay you to when you first apply.