Hi, all. My name is Tara. I’m part of Valley’s marketing team. One of my roles at Valley is writer/editor for the newsletter where you’re reading this story. I typically work behind the scenes to help Valley staff and patients tell their stories, so writing about myself feels rather odd. So, I’m going to ease in with a few things about me:
- My favorite thing to do is go on adventures exploring the Pacific Northwest with my husband, Trevor, and my kiddo, Edmund.
- I enjoy trying new recipes and have a continually growing cookbook and online recipe collection.
- I have multiple sclerosis.
We’ll get back to adventures and cooking later, but since March is Multiple Sclerosis Awareness Month, spurring the writing of my story, I’ll start there. Two years ago, my left hand was going numb. As someone whose job requires extensive computer work, I figured the numbness was related to improper ergonomics but scheduled an appointment with my primary care provider to get it checked out.
During the hand exam, I casually mentioned something I thought irrelevant because I experienced it off and on for years. I only brought it up because it was happening more regularly—when I bent my head down slightly, I felt an electric sensation down my spine. Post MS diagnosis, I learned this is called the Lhermitte’s sign and it is a symptom I still experience regularly today. The Lhermitte’s sign does not always mean MS but mentioning it to my PCP was enough to clue her in that my hand numbness could be a symptom of more than bad posture.
On the marketing team, we joke that any time we have a medical appointment we act as secret shoppers since we’re seeing Valley’s services from the patient viewpoint. I won’t bore you with the full list of tests that led to my MS diagnosis, but the “shopping” list was long and included multiple MRIs and a lumbar puncture (spinal tap).
The day I received my MS diagnosis created what felt like a “before and after” point in my timeline. There was my life before I had MS (or at least before I knew I had MS; it probably had been lingering for several years) and now how my life might be different post-diagnosis. It was a lot to process. My initial reaction was feeling somewhat…broken. But all the things that make me who I am are still there, and I can still do all the things I love, I just need to factor in how daily activities might affect my MS symptoms.
Trevor and I have nicknamed my MS “Buzzy.” He’ll ask, “How’s Buzzy doing today?” Most days, Buzzy is there in the background; present, but not too bothersome. An “invisible disability,” most people I interact with daily have no idea that I have MS–or at least they didn’t know before this article. Other days, Buzzy can be a real…pain. Everyone with MS is affected differently. I have two primary challenges:
My MS Team at Valley
Dr. Bet-Shlimon at Valley’s Neuroscience Institute – Sargon Bet-Shlimon, MD, is a neurologist who is fellowship-trained in multiple sclerosis and could be best described as the captain of my MS team. He oversees my care plan, monitors symptoms and MS activity, and is my first MyChart message if something feels off.
Infusion Center – My current treatment is a twice a year infusion of a medication to help mitigate new MS activity. The team at Valley’s Infusion Center has always made me feel comfortable and well cared for.
Want to support Infusion Center patients at Valley? Sponsor a recliner that will go in the new Infusion Center!
Outpatient Physical Therapy – Valley has neuro physical therapists who helped me develop an exercise routine to build strength and endurance without overheating (heat is one of the triggers that gets Buzzy going).
Hand Therapy – Working with a hand therapist, I learned adaptive tools that are easier for my left hand, as well as exercises to strengthen both hands.
Read more about Hand Therapy at Valley.
Learn more about adaptive tools from a Valley hand therapist.
Nutrition – There isn’t an MS “diet” to follow, but a dietitian from Lifestyle Medicine helped me find meals and snacks that are both nutritious and easy when I don’t have time or energy to cook.
Valley Diagnostic Imaging – Regular MRIs are a part of my treatment plan and the team at VDI is kind and reassuring, which is helpful for my mild claustrophobia.
- Hand numbness—if you’ve ever slept wrong on your hand/arm and had it fall asleep, mine feels like that all the time. My left hand is my dominant hand, and some tasks, like handwriting, are not as easy as they were before. Adaptive tools, like using a wide-barreled pen, make some hand functions easier. I can still use my left hand, but if I don’t take breaks to rest it, Buzzy will kick in and call for a full stop of whatever I’m doing.
- Fatigue—I’m a mom, I work full-time, and I have an active life, so fatigue is something I experienced before my diagnosis. What has changed is my recovery time. I used to be able to bounce back after a good night’s sleep. Now, if I don’t monitor my physical and mental energy output, the fatigue is more profound, and recovery takes much longer. Even doing too many simple or fun activities add up to my energy tank being depleted. The first sign that Buzzy is kicking in is weakness in my legs. Motion as simple as moving my foot from the brake to the gas driving my car will feel uncomfortable. When it gets rough, walking feels arduous because my legs feel like they have weights tied to them and all I can think about is finding a place to sit down.
To mitigate the fatigue, I take a lot of breaks. When the fatigue gets to be too much, I reschedule social invitations, or take a nap after running errands, or request a day off work because I need downtime to recharge. As someone who doesn’t like to bother others by asking for help, I’ve gotten much better at accepting that sometimes I need to ask others to take some of the load.
Holiday meals aren’t quite as elaborate as they used to be since I can’t stand hours at the stove, but we have fewer leftovers in the fridge, fewer dishes to wash, and more family time at the table. I still make family favorite dishes of lasagna and pineapple upside down cake and try new recipes as often as I can. Hikes include more sitting breaks on benches and driftwood, but the views are still spectacular. Trevor, Edmund, and I have many road trips planned over the next few months—if anyone has recommendations for Whistler or central Oregon, let me know! Buzzy may be my annoying constant companion, but it hasn’t stopped me from the experiences I love. If anything, it reminds me that it is ok to slow down and enjoy being present.
Your dad and I are so proud of you and your positive outlook on life. You are living a different norm than you planned but are still active and taking part in “adventures “ with Trevor and Eddie on a regular basis. Thanks for being the wonderful daughter that you have always been. We love you ❤️
Thank you for sharing your story with us and raising awareness for MS! Keep thriving even on those hard days with buzzy!!
Thank you for sharing. I feel I understand so much better what you are going through I’m still going to ask how you are doing because I love 💕 you.
Aunt Pat
I know this took courage, but thank you so much for sharing your story. It has given me a bit of insight as I will be helping someone with MS also. Stay positive!
All the best,
Kim
You are braver than you think!
Hi Tara, thank you for sharing your story With all the great doctors working with you and your positive attitude I’m sure some day your MS will be a thing of the past. Will keep you in prayers 🙏
God bless 🫶
Thankyou for sharing your story . You are a strong women .You are not going to let MS
rule you .You have this and we are proud of you for all you do ..Enjoy your life to the fullest and enjoy your adventure with outdoor trips and cooking adventures with new recipes to try .
Thanks for sharing – our MS symptoms are very similar. For Whistler, I love Crepes Montagne. Sometimes there’s a wait, but we’ve been pretty successful at ordering to go too!
Great article Tara. As someone who used to write for a living, I feel you did a great job humanizing an important issue. All the best to you, Trevor and Eddie.
Uncle Tom