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Kimberly

Nurse Kimberly Asks...

Life has its ups and downs. Sometimes we need a little help during the tough times. Many of my patients have told me how important their family and friends are to them when they need a hand. What role does your support team play in helping you?

Pam Answers...

The importance of family & friends when life with MS gets tough

Would you be alarmed if your toe went numb? Alarmed enough that you felt you should call your big sister? When my symptoms started out with a numb toe, no. I did not call her, or anyone for that matter. It was an annoyance to me from wearing shoes that were too tight. Right?

Months later, as it spread up my leg, over to my other foot, and up the other leg—oh boy.

I sure got an earful from my sister.

“Why didn’t you tell me that your toe was numb this whole time?!”

MS One to One Ambassador, Pam, and her sister

She was passionate that she wanted to be informed. Respectfully, I kept her updated with any new symptoms and struggles.

After my own diagnosis, she started to display symptoms of multiple sclerosis too. It was another shock for our family to absorb. Even though I would never wish this upon anyone, there is something to be said when someone close to you is going through the exact same journey as you.

We took turns supporting each other by helping watch each other’s kids, brought each other meals, and were always ready to listen and talk things through. We decided to start a tradition: when one of us would have a relapse, we agreed to meet somewhere to share our favorite comfort food together.

Ever since I was little, I always looked up to her. She was my BIG SISTER. Who wouldn’t want to be exactly like her? Even today, she has never let her MS get in the way of ANYTHING that she has ever wanted to do. Her example of eating healthy and her ambition to keep fit; her lifestyle has encouraged me to push myself further. She encourages me to try new things and bend my self-inflicted rules. I would not be who I am today if it were not for her.

Pam and her sister who has supported her throughout her relapsing MS journey

For instance, the time when we were kids and she protected me from a bully, I was aware from her response, that she cared for me. With her diagnosis, it gave me an opportunity to take my turn to protect her. I have considered it a privilege for me to be the hand for her to hold through her journey with MS. For the first time in my life, I felt like I was the big sister to my Big Sister.

My other anchors in this journey have also been my whole extended family. I am thankful for each of them.

As a disclosure, technically, I am the taller sister. But, she will always hold the title “Big Sister” because she represents everything I still want to be.

See What Stewart Says
Stewart Answers...

The importance of family & friends when life with MS gets tough

For better or worse, we live in a time where we are more connected than any other in history.

MS One to One Ambassador, Stewart, and his wife

One of the challenges of military life was that many in my personal network are literally scattered around the world. My wife and I live a good 12 hours from our parents, and even farther from other members of our extended family. We rely on and support each other. If there’s an immediate need for assistance that we can’t handle on our own, we are blessed with good friends here who are ready to help, just as we are there for them. For other supports, email, phone calls, and social media are great assets.

I have quite a few people who are not physically present, whom I still consider to be my support group. Some are healthy, several are dealing with their own medical challenges, one has multiple sclerosis, and another has a spouse with MS. When things get frustrating, there’s always someone willing to listen and provide much needed perspective. I periodically reach out to them for a wellness check, and they do the same for me. It’s just a nice reminder that you’re not alone and someone is thinking of you.

There are several social media outlets that are specifically for people with MS. Some are more specialized than others. For example, one Facebook group, “Men with MS,” has more than 2,000 subscribers, and provides a safe space for dialogues specifically for men with the disease. myMSteam.com is a social network specifically designed for people living with MS. In either case it is sometimes good to hear from others who know your troubles, even if they don’t know you personally.

Maybe it’s a military thing, or it’s simply a guy thing, but it can feel like accepting defeat when I have to admit that I need help with something. But sometimes it’s simply necessary. A couple of years ago, when we were moving, the movers had already picked up our furniture. All that was left was packing the rental trailer with stuff that the movers couldn’t ship or that we’d need immediately. I had a packing plan to balance the load and make it easier to get to the first things we’d need. I started wearing out, but kept pushing to finish. Finally, my wife pulled up a stool and bluntly told me, “Sit down. I can load our stuff, but I need your brain.” It stung, but she was right and I did. 

Sometimes I just don’t want to be around people, but too much time alone isn’t a good idea. Medications treat the disease, but family and friends can be equally vital. Sometimes they encourage me to keep pushing, but put on the brakes to keep me from pushing too hard. A word of support at the right time or a conversation as a distraction on a bad day (even via instant messaging) can make all the difference.

If there is someone you know who could use an encouraging word or two, share this post with them and let them know that even though you are not near, they are not far from your thoughts.

See What Pam Says
Kimberly

Nurse Kimberly Sums It Up

There you have it. Help and support can come in many forms. Sometimes it’s a family member, significant other, a friend, or even others in the MS community. Whether you need someone to talk to and eat comfort food with, like Pam, or someone to give you some tough love, like Stewart, surrounding yourself with loved ones can make a huge difference. Who do you turn to when you need support?

No one should ever feel alone. Count MS One to One as part of your team. Call us any time at 1-855-676-6326.

Continue the Conversation

Dennis Raymond

My wife Joanne and I are fortunate, living here in Seattle. She was diagnosed with MS in late 1999, retired from teaching in June, 2000, and has been confined in a wheelchair for the last 12 years. Seven years ago, I was fortunate to discover an MS carepartner support group that meets monthly. We now have about 30 members, and share our needs, wants, complaints and suggestions with each other at our meetings and through our email group. We have outside activities in warmer weather, an annual carepartner dinner in December, small groups that travel together and more. We also have helpful neighbors in our condo building. We are now providing care support for one neighbor who has been a good support for Joanne.

Wow! That's great, Dennis. Thank you for sharing. If you need additional support, MS One to One offers personalized support, where you can talk directly to an MS One to One Nurse. To register, visit https://www.msonetoone.com/sign-up, or you can call 1-855-MSOne2One (1-855-676-6326). We hope this helps. Please let us know if there is anything else we can do.

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