Multiple Sclerosis Across Generations: My Story

By Charissa Rigano

Multiple Sclerosis (MS) is partly caused by genes you inherit from your parents, and partly by outside factors that may trigger the condition. Experts assert that MS is not directly inherited, but it is agreed that the condition is more likely in people who are related to someone who has it -- for example, the chance of a sibling or child of someone with MS also developing it is estimated by the National Health Service to be around 2 or 3 in 100. I am not sure what this really means…but here’s my story.

1995

Returned home from my honeymoon.

Loss of feeling in my right hand and arm.

Checked into George Washington Hospital being treated by a neurologist.

FAMILY HISTORY.

MRI.

Lumbar puncture.

Steroids. 

US Open tennis on TV.

I know what the doctors are going to say since my father Richard Rigano (1940-1992) died in a nursing home in Massachusetts from MS in 1992 before he ever met my now husband. 

I was Daddy’s little girl who had lived my life watching my father ravaged by this un-curable disease -- how do I handle the same diagnosis?

I chose to mostly ignore the MS diagnosis and continue to live my life.

Continued to see my neurologist every 6 months. Took ‘MS' medication when we could get the insurance company to cover the cost. Although these medications are FDA-approved, for all intents and purposes they are being tested on MS patients. I say this because nothing cures the disease, and each patient is so different (with symptoms and disease progression) that there is no one drug that has been shown to change the disease progression.

In retrospect, I am forever grateful to the doctors who encouraged me to try these medications as my health may have been dramatically different if I had resisted the pharmaceuticals. 

Life moves on.

2000

First child, a daughter born February.

2005

Adopted second daughter, born December 2003.

Busy raising children and loving my family.

2008

Completed sprint triathlon (0.5 mile swim, 20k bike, and 5k run) to celebrate my 40th birthday.

2018

Major life changes including: oldest daughter graduated from high school and left for college, and death of my chosen mother figure – the mother of my heart - by suicide. In hindsight, I realize that these stressful life changes including losing my best friend affected my health.  

Noticed issues walking, including left foot drop and inability to walk as far as I could in the past.

Tried many different things. Changed my diet including eliminating inflammatory foods (dairy and gluten). After many unsuccessful physical therapists (PT), I realized that patients with MS need a knowledgeable PT, and I found an amazing MS-specific PT.

I can no longer ignore my MS, as it is affecting my life. I must take action.

My neurologist spoke of my disease as ‘secondary progressive’ during my next appointment.  I looked him straight in the eye and said, “If you ever say that again I will walk out and never return.” A bit dramatic, but I am Sicilian, and visions of my father flooded my memory at the use of ‘progressive’ because SPMS (secondary progressive MS) is what my father had that caused him to end up in a nursing home begging us to end his life.  It is a type of MS that comes after relapsing remitting MS, and your disability gets worse and worse without periods of remission. When my doctor suggested that my disease was moving to SPMS, memories of my father and his final days paralyzed in the nursing home bed, begging us to end it all, came flooding back. 

After reconnecting with a friend from high school who also has MS, I learned about her experience with Hematopoietic Stem Cell Transplant (HSCT) which halted her MS. After doing my own research, I went to Puebla Mexico and had HSCT in December 2020. My friend from high school, let's call her Kristen, is a very kind person who always told me of the fond memories she had of my father.  Although we fell out of touch after touch after high school, I knew that she had MS.  For years I toyed with the idea of contacting her, but never did.  When my physical condition deteriorated, I finally got the guts to call her and she shared her journey with me.

2022

I remember what life with my chronically ill father was like, and how he spent his last days in a nursing home begging for us to end his life. This experience was neither good nor bad, just how life unfolded. It drives me to never stop loving and taking care of myself, even when I am exhausted.

I am now 19 months post-HSCT, and although I have lingering doubts at times about the effectiveness of the treatment and my health -- like when I caught Covid-19 after 2.5 years of avoiding it, and getting Lyme after a tick bite -- I remember that I am human and have to be cautious and patient when I get sick.  

Biggest findings from this time:

Recovery from HSCT is no joke.

I must manage my stress and my diet.

I have to keep my body moving (“if you don’t use it you’ll lose it”).

Living with a chronic illness includes being flexible.  

Be thankful for my friends.

I believe that I have halted the progression of MS, but I continue to live with pre-HSCT myelin damage. My current mission is believing that I can do whatever I put my mind to, and am not limited by doubts and chronic illness. How do I manage my chronic illness? By having a positive attitude, moving my body every day, and not letting fear win.  I am constantly working on getting over my fear of entering new situations, but hope that as I progress on my journey this will get more natural and easier.

Charissa Rigano is an engineer, educator, yoga devotee, health nut and woman living with a usually invisible chronic illness.  Her latest challenge is learning how to live with this chronic illness and the grief around losing the woman she used to be. She currently lives in Andover, Massachusetts with her husband and 2 dogs while her two daughters are spreading their wings at university and “the real world”.