My MS story is both remarkable and very typical. I was once a busy mom and kindergarten teacher. The Saturday before school started in 2012, I had a horrible stabbing pain in my head with radiating numbness and tingling going down my right side. A headache unlike any other headache I’ve ever had followed. I was so sleepy. I just wanted a nap. The next day, Sunday, I agreed to go to the hospital for this headache I just couldn’t take any longer.
Heading to the hospital for an intense headache
I had a healthy mistrust of the medical system after decades of mysterious symptoms that never had any real causes or remedies. And we have a rule in our house to avoid the hospital on nights, weekends, or holidays! The hospital thought I’d had a stroke so ordered a CT scan.
A walnut-sized tumor AND areas of demyelination
The scan showed a walnut-sized tumor AND areas of demyelination. Just one awful thing wasn’t enough! At the time, the tumor was scarier than the possible MS. My grandmother had died from brain cancer. The doctors couldn’t tell me what, of all my symptoms, were caused by the tumor or the MS. They couldn’t tell me it wasn’t cancer without a biopsy. That tumor had to go! The tumor was successfully removed and benign in early 2013. As it turned out, almost all my symptoms were caused by MS. As with most of us, I had many mysterious symptoms with no clear explanation, course of action, or cure. My neurologist thinks I’ve had it for probably 40 years now.
Starting on DMT, having to retire, and other life changes
I have been fortunate that my disease progression has been slow. Once I was diagnosed and recovered from brain surgery, I started on a DMT that decimated my immune system. My neurologist told me to stay away from crowds, kids, and sick people. I asked her when she had last been to kindergarten!
My fatigue had gotten unmanageable by then and I had to retire from teaching on a disability. With 28.5 years in, I was close to retirement, but not even close to being ready. I loved my job! It wasn’t just what I did, it was who I was. It was devastating. As with many with a chronic illness, my marriage failed. It was a difficult time, but life is so sweet now.
Finding myself again
It led to a quiet, peaceful, loving home for me and my youngest daughter. It allowed me to get back to being who I was, just on my own and not as a wife/mother/teacher. It was a wonderful time of self-discovery. While my disease course has been slow to progress, it has progressed. I used to really enjoy hiking with friends, gardening, dancing, shopping, and entertaining among other quieter hobbies.
One by one, those all fell away as I didn’t have the energy or mobility to do them any longer. I felt isolated as my friendships drifted. No one intended to shut me out — it just happened as I became less and less abled.
Breaking my ankle and getting fitted for an AFO
At the start of the pandemic, my foot drop caused a tumble resulting in a broken ankle. My walking never quite recovered from that. My part-time cane use went to full-time. I got fitted for two types of AFOs.
I went from hiking 5 miles regularly to barely being able to go a third of a mile. My neurologist told me I had to keep walking to keep walking. I tried! It was so exhausting to plan and watch every single step. The temperature, grade, surface, and my fatigue level all impacted my steps.
I felt bad walking with anyone because I was so slow. A once enjoyable social activity became a painful example of what I just could no longer do.
Learning about the Cionic Neural Sleeve
Then came the Neural Sleeve. I first heard about it in an MS Connections magazine and my doctor said I would be the perfect fit for it. I was so excited the day of my onboarding! I was very hopeful for this device, having had some success with E-Stim in physical therapy. I was hoping it would lift my foot so I could walk without tripping. It has done so much more! It’s been incredible.
From my very first day, it met my initial expectations. It lifted my foot. I walked without tripping. I went up stairs better. I knew I had to start slow, but it was hard to wait. I onboarded on Wednesday. By Sunday, I walked 2 miles! 2! Cool day, flat paved surface, a couple of short rests, but what a gift.
Each week, the sleeve astounds me AND my physical therapist with what we are able to do together. It’s my new best friend!
Increased endurance, strength, and balance
Early in October, my fiancé and I took a little trip. I was able to walk three miles on a hot day. That was only two weeks after starting with the sleeve.
My right-sided weakness still exists, but is less. My right foot used to turn in but is now facing forward after six weeks of use. My balance is better. My fatigue, which has been debilitating, is less because I don’t have to focus so much on just taking a step. My strength and stamina are both increasing. Another amazing thing is that I walk so much better even when I am not wearing the sleeve. There’s carryover. My brain and my leg are remembering how we used to do it! I never expected these dramatic outcomes. The sleeve has done other wonderful things too.
No one wants to be a burden to their family. A couple of years ago, I met a wonderful man who is now my fiancé. I seriously questioned whether it would be ethical to start a relationship knowing that this disease is progressive and incurable.
He is patient with my limitations and so very helpful. My children are grown and good people. I want them to have their own big beautiful lives and not have to care for me. I am fortunate to have my parents still living. I want to be able to take care of them when they need care in their twilight years instead of having them take care of me. I’m close with my family and MS has hurt them too.
The Neural Sleeve is a gift to them as well. My oldest says she doesn’t worry about me as much. My partner and family are all amazed at the changes the sleeve has brought. My aunt calls it my “magic sleeve” which is what we all call it now. I was able to host my youngest’s birthday dinner at the end of October.
I went to a wedding this past Saturday and wore shoes with a little heel. I hadn’t worn anything but athletic shoes in three years. I wore a dress and heels and didn’t feel disabled. I felt normal. I walked normally. I didn’t have to scope out every route I might take or plan for how to get from point A to point B. I was able to just be happy and in the moment.
Improvements that can’t be measured on the EDS scale
These are the improvements the sleeve brings that can’t be measured on the EDS scale. It brings me back to me. It brings peace of mind to my family. It opens the world of possibilities for the life I will have with my new husband.
MS is isolating and confining. I know I will be managing my MS symptoms for the rest of my life. But my magic sleeve makes all that doable. It is hope and possibilities, potential and happy endings.
I am so very very grateful to have this device and the team at Cionic. Words are not enough to describe how profound this has been for me and my loved ones. You are all just the best! Thank you.
Written by Amy Salisbury
This is a user story from a Cionic customer, who has not been compensated to share their story. Individual results and experiences may vary. Consult with your doctor on treatment decisions.
