From Caregiver to Patient: Jamie’s Fight With Progressive MS

My name is Jamie Perkins. I’m 41 years old, and in August of last year, my world was turned upside down when I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) — a rare and aggressive form of MS that steadily worsens over time and currently has no cure.

For years, I lived with unexplained symptoms — numbness, chronic fatigue, muscle weakness, trouble with balance, and memory issues. I kept pushing through, not knowing what was happening inside my body. Finally, doctors found multiple lesions on both my brain and spinal cord, confirming that I had likely been living with MS for many years without knowing it.

I’ve spent the last decade doing what I love: helping others.

I worked as a Community Relations Director in assisted living communities, guiding families through some of the hardest decisions of their lives. Later, I served as the Vice President of Development for a hospice company here in Arizona, working closely with seniors and their loved ones during their most vulnerable moments. Supporting others has always given my life meaning.

Now, I’m on the other side — and it’s one of the hardest things I’ve ever faced.

PPMS has impacted every part of my life. I now use a wheelchair whenever I leave the house, and a walker to move short distances at home. My balance is unpredictable, and my energy levels are severely limited. Simple daily tasks take a tremendous amount of effort — and some days, I just can’t do them alone.

In January, I had to make the painful but necessary decision to move in with my family so I could get the support I need. I could no longer live safely or independently. Giving up my home and my independence has been emotionally devastating — but my health left me no choice.

I’ve also had some major setbacks. Recently, I underwent steroid infusion treatments, hoping to slow the progression of the disease. Unfortunately, my body rejected the treatment, and I went into a severe MS flare, which left me even more debilitated.

As someone who has always been the helper, the caregiver, the person others turned to — it’s incredibly hard for me to ask for help. But now, I truly need it.

Because I can no longer work, I’m facing serious financial challenges.

There are so many expenses that insurance doesn’t fully cover:

• Ongoing medical treatments and medications

• Physical therapy and mobility aids

• Home modifications and equipment

• Transportation for doctor’s visits

• Basic living expenses like food, rent, and bills

Your support — whether through a donation, sharing this page, or sending a kind message — means the world to me. Every dollar goes directly toward helping me manage this disease and maintain as much independence and dignity as I can.

I’ve spent my life helping others. Now, I’m asking for a little help in return.

Thank you for reading my story. Thank you for your kindness. And thank you for standing beside me in this fight.

With gratitude,

Jamie Perkins