Alzheimer's Disease

For nearly two years, Layla was evaluated and treated for suspected relapsing polychondritis, a rare inflammatory disease affecting cartilage, along with amplified pain syndrome (AMPS). She received biologics and other medications, but we continued searching for answers. Although specialists had different opinions about her diagnosis, a recurring theme was the possibility of an underlying complex pain syndrome.Meanwhile, my father was battling mycosis fungoides, a rare lymphoma, and my mother was living with Alzheimer's disease. I spent my days advocating for my father while Layla underwent treatments and received home instruction, trying to be there for my husband, Zach, and our older daughter, Eliana, too.my father died in March 2026. Days after his funeral, we moved my mother into assisted living, and I took Layla to Mayo Clinic. It was there that we first learned about Red Ear Syndrome, a rare and poorly understood condition that offered a different perspective on her symptoms.That August, as Layla's ear flared again, I became sick. Painful mouth ulcers left me barely able to eat or drink. I was diagnosed with pemphigus vulgaris, a rare autoimmune blistering disease, and began steroids and Rituximab infusions.Through instagram, I discovered Dr. Alon Seifan of NeuroWell, a physician I might never have found otherwise. He began approaching Layla's symptoms through Red Ear Syndrome, complex regional pain syndrome (CRPS), and migraine-related mechanisms. His approach to treating her migraines was different from what previous neurologists had tried, and we're finally seeing encouraging results. As Layla's medical journey evolved, so did our understanding. Today, we're exploring the possibility that her symptoms are primarily neurological and pain-related rather than autoimmune.#Pemphigus vulgaris #redearsyndrom e #ComplexRegionalPainSyndrome
#MightyTogether

I see your posts every day. I follow your stories, your ups and downs. I am not always visible, but I am always here in the background.

Right now, I also need a community and a safe place to land, a place where I feel safe. There is no better place than here.

Right now, I am between very hopeful outcomes and crushing grief and worry. I am helping my siblings care for my mother. She was diagnosed with Alzheimer’s disease 2 months ago. She was diagnosed very early, and right now it is mild. We were hopeful that she would qualify for new treatments in hopes of slowing down the progression of the disease. She does qualify, and we are now in the process of arranging all of that. It is wonderful news, and I am so happy for the chance to prolong her functional life.

I found out 2 months ago that I was going to be a grandmother. My son and my daughter-in-law have wanted to start a family for a while. We were all so excited when she found out she was pregnant. They were over the moon, as were both sides of the family. At her last appointment, she found out that this pregnancy wasn’t viable. I got a soul-crushing call from my son. He was devastated but trying so hard to hold himself together, trying to be strong for his wife. My heart breaks for both of them. I love my daughter-in-law as if she were my own. I am trying to be there for both of them while processing my own grief for the loss of my first grandchild.

#I know there is no quick way through hard times. All I know to do is keep going and moving ahead with life. Sometimes that is just really hard. I have so much to be grateful for with my mom, and the grief and sadness all at the same time. It is quite confusing. #AlzheimersDisease #ChildLoss #Grief

Hi, my name is shaijakel. I’m here to support caregivers, patients, and families through the emotional and practical challenges of caregiving.
With over 20 years of experience as a Certified Nursing Assistant, an associate degree in medical assisting, and a bachelor’s degree in behavioral science, I’ve spent much of my life walking beside others during their most vulnerable moments. I’ve seen the weight that caregiving places on the body, mind, and spirit—and I’ve felt it, too.
Now, as I pursue my master’s in clinical mental health counseling, I’m passionate about using my education and lived experience to uplift others. Whether you're navigating chronic illness, caring for an aging loved one, or trying to cope with burnout, you're not alone. My hope is that by sharing stories, reflections, and mental health tools, I can be a voice of empathy, strength, and validation for others walking similar paths.

#MightyTogether #Depression #Anxiety #Dementia #AlzheimersDisease