Anyone have experience with Leqembi (lecanemab-irmb)
Leqembi is a biologic that helps target and remove existing amyloid plaques. A member is interested in learning if anyone has tried/has any experience with Leqembi (lecanemab-irmb) and is willing to share. Thank you!
I begged my neurologist to put me on this medication. Unfortunately, to my surprise I was already in a stage to advanced for it. I take the largest amount of Aricept as prescribed. I have a nurse who comes and fills my medication each week. I have made a med error but I called the nurse to let her know. I know people are reluctant to get help in their home but for me it increases my independence. And frees my family from additional caregiving responsibilities which I understand can be very stressful!
, that's incredibly frustrating when you need to have a diagnosis for a prescription, and it can take so long to get one. Hopefully, the intranasal insulin will be available soon.
Could you share a little about how you built your team? - Warmly, Donna (Team Member)
It took a little bit to build my team but the basis is my neurologist. He has been with me since I was diagnosed with Primary Progressive MS in 2003. The next layer is my counselor, who I brought aboard 10 years ago when our oldest daughter was getting married, our middle daughter was in a long term rehab and my father was dying of cancer, it was too much for me to take on as one person and I am so grateful that I found her. She is from the military and specializes in PTSD. As a retired nursing professor, I knew that I would need in home care to lengthen my best chance at remaining independent. In 2021, after a devastating bout of COVID I was placed in Hospice for a year. However, my oldest dad was expecting her 1st child and I decided that I was determined to see the birth of my grandson. I did see Michael! So I transitioned to Palliative care. Once in Palliative, where I remain today I decided to build a team. A nurse, who fills my pills each week, an aide who assist with my shower weekly, a speech therapist because I have at times forgotten how to talk and a PT to keep me stronger than I would be without one! Together we work hard each week to keep me at home and safe. I have a Palliative Nurse who come once a month who orders all the medications. I see the neurologist 2x a year and my PCP 1x a year. I do not have any traditional testing as it makes me uncomfortable and having PPMS I have had so many test! My husband is probably the most important team person that I forgot to mention. He is the captain! He goes to appointments, makes sure I have my medication (which is normally delivered) and is very kind and patient. He never says do not you remember or expects more from me than I can manage. My children are not part of the team. This is far to difficult for them to watch. That is why having a staff keeps it from being personal! It is covered by our insurance company. They understand that it is cost effective for me to remain in my home. My husband manages the paperwork. That's why he is a great captain! You have to be humble to let b people help you. You have to give up some of your modesty and your home to strangers but soon these strangers become dear friends that are your lifeline to independence! @DonnaFA
Sparky and Tommy are my constant companions! They are so sweet and give me unconditional love! Of course they don't expect me to remember anything! @DonnaFA , they operate on feelings and connection - that's why they are infinitely better than a lot of people, lol. - Warmly, Donna (Team Member)
I was Diagnosed with Alzheimer's July 2023
, I wish they could take something successful within certain stages, and modify it to help people who are at a more advanced stage. I'm hoping for the breakthrough to come soon. - Warmly, Donna (Team Member)
