Here’s what it’s like to be a parent with multiple sclerosis


Some moments are seared onto your mind. For me, one of those was an otherwise normal day as a new mom to a beautiful four-month old little boy: the day that I got a call from my neurologist diagnosing me with multiple sclerosis.
When the call came, though I was already exhausted and stretched too thin as a new mom, I felt a wave of relief. Finally, I had an answer, after two years of knowing something about my body just didn’t feel right. When I hung up the phone, my husband and I hugged and said we’d figure it out. I had to stay the healthiest I could for this little boy who had entered my world just months earlier and broke my heart wide open.

https://www.today.com/parents/selma-blair-i-m-mom-multiple-sclerosis-ms-t153853

Thank you Heather Millen for posting your story online.

This is a must-read story about what it’s like to have multiple sclerosis.

Glasgow man, 30, with multiple sclerosis to take on Arctic trek for charity

Scott, who was diagnosed with relapsing remitting MS in 2015, will travel nearly 66km in temperatures of as low as minus 30 degrees Celsius.

He said: “Since being diagnosed with MS four years ago my motto has always been to ‘Challenge MS’ and I can’t think of any bigger challenge than the arctic trek.”

“I want to take advantage of this period of stable health that I am going through. Something I have learned from living with MS is that this can change at the drop of a hat.

https://www.glasgowlive.co.uk/news/glasgow-news/glasgow-man-30-multiple-sclerosis-16240803

Good luck Scott on your venture.

He is right multiple sclerosis can change on a dime as you can be walking one day and in a wheelchair the next day.

7-year-old Farmington Hills girl organizes bike-a-thon to fight MS

Amelia Nordhaus, 7, of Farmington Hills, is excited about her third annual bike-a-thon to raise money for the National Multiple Sclerosis Society.

For the first time this year, she’ll be riding without training wheels, says her mom, Tanya.

https://www.theoaklandpress.com/lifestyles/suburban/year-old-farmington-hills-girl-organizes-bike-a-thon-to/article_4b1ed380-70fa-11e9-9c9c-63deae1d0f39.html
Amelia Nordhaus is an awesome young lady; she’s setting an example for adults. This is her third year of having a bike-a-thon and is a leading fundraiser for the National MS Society in Michigan.

Thank you, Amelia keep up the good work.

‘I choose to laugh’

FOR years, 27 year-old Janelle Boisson suffered from bouts of total paralysis and questioned her sanity, only to be diagnosed four years ago with multiple sclerosis (MS). No one else in her family has the disease.

“When I found out I had MS I was relieved that I was not crazy,” she told Sunday Newsday.

https://newsday.co.tt/2019/05/05/i-choose-to-laugh/

Like Janelle Boisson after years of testing I was also relieved to know what I was dealing with.

This is a great article to read because it highlights how difficult it is to diagnose someone with MS.

Okie from Muskogee: Sommers finds ways to make others smile | News | muskogeephoenix.com

Devastating disease doesn’t hold her back Sommers recalled noticing that she was losing her balance around 2010. She recalled thinking it was some other disorder.

“After a year and a half of being treated for something else, something told me it was not in my back, but in my brain,” she said. “It was the part that controlled my balance.”

She eventually was diagnosed with multiple sclerosis, a potentially disabling disease of the central nervous system. She said her monthly infusions help her manage her MS.

“Once the damage is done, it can’t be reversed,” she said. “All you can do is stop it from getting worse, which is where I’m at.”

Sommers says she tries to be as active as the disease would allow.

“It’s important I keep moving,” she said. “But there’s a fine line between me keeping moving and overdoing it to where I’m having to chill on the couch the next day.”

 

https://www.muskogeephoenix.com/news/okie-from-muskogee-sommers-finds-ways-to-make-others-smile/article_c0eaced4-9a85-5ce0-91a6-71ecf0a7f9ac.html

This is an amazing story about Miriam Sommer and in spite of having multiple sclerosis she continues to help others.

The Horse Can Walk for Me:’ Battling Multiple Sclerosis on Horseback

And just a few years ago she knew something wasn’t right. “2.5 years ago I stated having a lot of weird symptoms like numbness in half my body. I lost a lot of mobility and couldn’t talk right – couldn’t think right,” says Landris.

Being on the horseback makes her feel like her old self. “It’s one of the things that makes me feel like I used to feel – makes me feel like the same person I was,” says Landris.

Liberty and her long-time friend Denise Rooker are hosting their annual Run Walk or Trot for MS again this year, benefiting MS research at the Brigham and Women’s Hospital.

https://www.9and10news.com/2019/05/01/the-horse-can-walk-for-me-battling-multiple-sclerosis-on-horseback/

This is a touching and inspiring story and how Liberty Landris has multiple sclerosis and her love of her horses.

She’s going to have her own fundraiser and I like the title Walk Run or Trot for MS.

My battle with an Invisible Disease – Los Angeles Sentinel

My story begins February 2008, I was 23, I was a recent college graduate. I was working a highly sought-after public accounting job. I had moved to a city where I worked long hours in a quest to climb the corporate ladder. In early 2008 I had started experiencing random numbness, it went from being one foot to one leg, from one leg to both legs. It felt like my limbs had fallen asleep, but I couldn’t shake the feeling.

One day about a month after first experiencing the numbness, I woke up numb from the neck down. I didn’t trust myself driving, the walk up and down the three flights of stairs to my apartment was daunting and the simple task of getting out of bed became a chore. I went to doctors, but all the doctors saw was someone who looked normal. How could someone who claimed to be numb, walk and talk. Over and over again I was turned away as they said nothing was wrong. In a last-ditch effort for answers I started going to the ER almost every day for a month.

Eventually I met a neurologist who believed something was wrong, she just didn’t know what. Thankfully towards the end, her husband walked in, and he was a specialist neurologist, and he could tell something was wrong. He took a look at me, carried out visual tests and he said, you have to go straight to the hospital. Then after a week in the hospital and many MRIs scans later I left with the diagnosis of multiple sclerosis (MS).

https://lasentinel.net/my-battle-with-an-invisible-disease.html

This is a well-written article; it gives a pretty good idea about how quickly MS can strike without warning.  I will say it’s a must-read article that anybody who doesn’t have MS so they can understand what the person is going through.

Multiple sclerosis is clearly an invisible disease for some which makes it hard for people to understand. Before I started showing signs, the tingling and burning in my feet could not be seen by anybody. I was told it must be a mistake because I couldn’t have a disease.

The article also indicates how difficult it can be to diagnose multiple sclerosis. I went over 5 years with various diagnosis of what was wrong such as a collapsed disc. a pinched nerve, and fibromyalgia, before I was finally diagnosed with MS.