Sharing post by rachelj28 from the new caregivers group

Jeanne C.

rachelj28 Member Posts: 1 Member

3:06PM

Hi - I'm new to this group, DH in process of confirming Alzheimer's diagnosis. Doctor feels strongly this is the diagnosis and has spoken to me about Leqembi and a clinical trial. Lots of information for me to digest and was curious if anyone else has any experience with how to navigate this part of the journey and/or experience with the medication and/or a clinical trial. thank you

M1

Welcome to the forum Rachel. I don't think we have had many takers on Lequembi as yet, primarily because of the difficulties of the monthly administration for someone with dementia and the risk of significant side effects. Ditto with participation in clinical trials, though they remain critical to any hope for progress. What stage is your DH? This is a good place for learning about practical things you may face and should do (such as get your legal and financial affairs in order asap).

JJ401

Clinical trials -- DH had participated in a sample (blood, salvia, urine) collection earlier that they were using for some type of testing. His participation in that led to offers in two trials. I just turned down both. I weighed the pros and cons of each and decided the cons outweighed the pros. It was a hard decision.

If you are interested in clinical trials, your neurologist may be the place to ask. You could also look at the website of hospitals/ centers near you that have dementia programs. If they are recruiting for trials, it is usually on the website.

I am going to echo the advice above about seeing an elder care lawyer. It is essential to understand the rules in your state and have your documents in order. Even if you already have documents, you need to have them reviewed with his diagnosis in mind.

eaglemom

Welcome to the message board. I'm glad that you found us. I don't know of anyone on that medication, but that doesn't mean we don't have someone taking it. Most here seem to start off on the standard cocktail & through their neurologist see what works for them.

As for just being diagnosed and starting the clinical trial, I know for a fact some trials want the subjects stable prior to the clinical trial. In other words, they want to have a good baseline to work from, so to speak. Personally, my DH & I have participated in several clinical trials. None of them were involving medicine, but rather behavior(s) and such. It's all quite interesting to me. I made sure to go through DH's neurologist prior to accepting any trial.

As has been stated, the most important thing right now is for you to get all of your paperwork in order. You should seek the advice of an elder care attorney and go from there.

eagle

Jeanne C.

Ttt and trying to make sure @rachelj28 can find it.

spunkykid578

https://alzconnected.org/discussion/67711/sharing-post-by-rachelj28-from-the-new-caregivers-group

I am in the same boat. My DH has been diagnosed with early onset of dimentia and in the process of more tests and more appointments. Overnight I feel my life has changed. Does the anxiety every go away? I have a preteen and a teen and I am worried about how I will handle all that is to come. Am I strong enough? Will my life ever feel normal? Where to start? Any suggestions would be appreciated.

Jeanne C.

https://alzconnected.org/discussion/comment/194182#Comment_194182

Hi and welcome. You've found a truly helpful place. It's never going to be the same, but there is a lot you can do to make it easier. First, take care of yourself and your family. I strongly recommend seeing a certified elder law attorney (CELA) to make sure you have all your legal documents set up correctly. That will help provide a safety net. Don't be afraid of the word elder. These lawyers will be your experts on the rules in your state and how to protect your family.

I'm assuming your husband is early in his progression. Work with your medical provider to come up with a plan. Learn what you can. And please use this group to vent, ask questions, and tell your story. There are some amazing people here that have been a lifeline for me.

spunkykid578

Thank you so much. This is what I need. I feel like no one knows how I feel and I have a great therapist but I do not think she even understands all my feelings.