Multiple Sclerosis: What You Don't See
Possibly a possibility
I guess I knew it was a possibility in the back of my mind, but I still didn't expect the doctor to take less than two minutes to look at my MRI, listen to "my story" of the past four years, and then diagnose me with Relapsing-Remitting MS (RRMS).
I went to that appointment with no expectations of an answer, and just like that, I got one.
It all started when...
About four years prior, I started waking up feeling like a truck hit me dead on. I felt tingly in my brain. I know it sounds weird, but that's what I felt. I also felt a small tingle in the left corner of my upper lip. I went to a neurologist in the area, and we talked about migraines, which I admittedly had sometimes. He ordered an EEG and an MRI. The MRI, normal. The EEG, abnormal. Diagnosis: probable seizure disorder and atypical migraines.
Remember?
I started having problems concentrating and remembering conversations.I did cognitive testing; the results were I had a cognitive disorder caused by some type of neurological disorder. Even my motor skills are off.
Fessing up
It wasn't until I started seriously dating someone I had to come clean about the times I didn't feel "right." I would get so tired I couldn't move off of the couch into the bedroom. Sometimes I would feel tingly in my left foot. I started getting foot cramps and leg cramps in my left leg. I started feeling sick in the shower and had to rush out to get cooled off.
I for an eye
I began to have this horrible pain behind my left eye. Nothing in my arsenal of migraine meds could help it. I went to the eye doctor and everything was ok, as in no Optic Neuritis. I had a neuro appointment in December, so I waited until then to bring the next round of symptoms. The neuro ordered another MRI and she gave me an oral steroid pack.
Testing, testing, 1, 2, 3...
I had several messages from the neuro. My MRI showed two little spots for the first time in four years. They want more testing. SSEP, EVP, and maybe another spinal tap. EVP normal, SSEP abnormal in the left tibial nerve again, but not enough for a diagnosis.
In March, I was feeling pretty bad. The eye pain was there still. I was fatigued. The tingly stuff was worse in my leg, my foot, my fingers, all on my left side. She wanted another MRI.
It's not a tumor
They found something on the MRI. A mass, she called it. They wanted to send me to a neurosurgeon for an opinion. They asked me if I ever had cancer before. Seriously? Cancer? So I went to the neurosurgeon a couple of days later. And guess what? He didn't know what it was, either! "No one wants to stick their neck out and diagnose this." He said maybe a tumor, or a large tumefactive MS lesion. Those are my two options? A brain tumor or MS? Can I not see what's behind door number three, please? He said come back in four to six weeks. If it is larger or changes in any way, we will do a biopsy.
I am not a doctor, but I did sleep at a Holiday Inn Express last night...
No one was cutting into my head. I had too long of a history of weird stuff going on that, to me, pointed more to MS than to cancer.
The next day I called the neuro to tell her about the appointment. Before I could tell her what I wanted, she said, "I am calling my collegue at the Shepherd Center. I am going to get you an appointment there and send your records. Get all of your MRI CDs today so you can bring them with you."
And just like that, I had an appointment a few days later at the BEST place I could be. The MS Institute at the Shepherd Center in Atlanta, GA. Within minutes, Dr. Ben Thrower walked in, introduced himself, and said, "Tell me your story."
Holistic Care
Eight years ago, and I am still a proud patient of Dr. Ben Thrower. Dr. Thrower is honest and sincere, and exemplifies patient-centric care. Dr. Thrower treats MS holistically with a team approach; using disease-modifying therapies, exercise, physical therapy, occupational therapy, speech therapy, pain management,psychology, and patient education.
Shepherd Center is my home, Dr. Ben Thrower my physical and advocate, and the staff and other care providers my support system and family. It is a blessing and privilege to be a patient-member.
What now?
Although I had to end my career early in 2015, I couldn't dream the gifts MS would bestow upon me: MS patients I connect with on a daily basis, opportunities to participate in advocacy and testify for healthcare legislation, and serving as an officer on the Board of Trustees for National MS Society.
The Big Ask
I bet you're wondering, "Why does someone that looks like her need an Alinker?" It's what you don't see in the pictures. The long walks I can no longer take. I was a college athlete, and now folding laundry causes fatigue. My left leg and foot is numb most of the time, and when fatigue sets in, I drag that foot and swing that hip, causing hip pain on the right. The Alinker for me and my community represents freedom, mobility, happiness, independence, and relief. The ability to walk a little longer with my fiancé and dog, take a walk with my sister and nephew, go to a festival for a few hours and not worry about finding a place to rest. Finding relief in the fact I may not have to end things early for everyone because of my fatigue. The things you may take for granted...the things I used to take for granted.
I set a goal to raise money so I can get back to life outside using the Alinker. Your gift means helping me stay active, enhancing my emotional well-being, and regaining some of the freedom I lost.
The Best Part
The campaigns are about sharing. Most people have no idea what life is like when you live with MS or what happens after you have a stroke. Isolation is often a bigger problem than the symptoms of the disease itself. With the campaigns we can share and educate people, because it can happen to all of us. When we create a movement where people simply show up for each other, it might get a bit ‘safer’ and less ‘scary’ to engage with each other. Some people share their experiences on their campaign, others share their funds to support the campaigns. It is not about asking for money, it is creating an opportunity for people to learn and show up with #generosity. Being generous resonates with who we are as humans. We understand generosity deeply and when you practice it, you feel so much better
PLEASE NOTE
- The campaigns are in USD $, and since to the pandemic the price increased from September onwards $2950 USD. This includes the Alinker, shipping, process and campaign fees and our #AlinkerFamily support.
- The campaigns are all or nothing, no credit cards are charged unless the campaign reaches its goal.
- As soon as the campaign reaches its goal, we ship an Alinker (from direct stock or you'll be placed in line, delivery 6-8 weeks).
- Campaigners do not handle money. On disability or welfare, you cannot handle money without being penalized, but you can receive an Alinker !
- When the campaign raises more than the goal, the campaigner can chose another campaign which we then make the donation to, paying it forward, or the balance will be placed in our Collective Campaign to help future campaigners.
- If you want to start a campaign and are outside Canada or the USA, write an email to stephanie@thealinker.com. We can potentially get a shipping quote to where you live, and include that in the campaign goal, though we like to keep shipping at a minimum, so we will not ship anywhere beyond $250 shipping costs.
Together we build a movement of kindness and generosity, because we all need it
Why do we facilitate crowdfunding on our site?
We believe that the Alinkers should be available for everybody, regardless of income and people who start a crowdfunding campaign here, will have access to a life changing Alinker. These crowdfunding campaigns are the first step to make Alinkers available for everybody. BE and the Alinker company are now putting their energy together to build a generous community around all the campaigners! The campaigners are people who allow others to show up generously, give them love!
Here is the Alinker segment as was aired on CBS Innovation Nation October 2019 - https://youtu.be/pk96VDkJ9NU
Why an Alinker?
Generally, medical devices are a technical solution for a body with a
problem.
The Alinker is designed for who we are, a whole human
being, who wants to live an active and engaged life. We are a human,
we have a body. Whether we miss a leg of have MS, it does not change
who we are.
Yet the world we live in, treats us as a body with a problem, which creates a social divide between people based on their body, based on what we have, not on who we are. Isolation and loneliness are more devastating than the disease itself. So we need to show up for each other, acknowledge each other and be present to who we are.
These campaigns are here to bridge the gap between a high quality custom Alinker, and the people who live at the receiving end of a 'sickcare' system that drives people into poverty.
So, show up, be radically generous, it is something we humans really
understand.
When you read each story in each campaign, pause and
imagine who that person is, and why they started the campaign, reach
out to them, let them know they are surrounded and seen, heard and not
alone. When we do that, we feel better and create a safer community
where we know we can show up for each other. It connects us with our
essence, we are radically generous creatures, we just got a little
lost in systems that are not designed for our wellness.
Alinkers change lives, here are a few people
GO TO CROWDFUND, WHY, HOW, START
Who is the Alinker for?
The Alinker is for people who want to stay active, regardless of mobility challenges.
To operate and use the Alinker you must have the ability to:
- walk to some degree
- flex and extend your legs
- bear weight on one leg briefly while getting on and off the Alinker
- be consciously aware of your surroundings
- be aware of your ability and limitations
What is the Alinker?
The Alinker is an exceptionally cool, three-wheeled walking bike
for humans with mobility constraints. It’s not a medical device,
it’s a lifestyle tool, designed to enable users to lead active and
socially engaged lives — at eye level.
On the Alinker, users sit upright -- at eye level with standing
companions. Weight is supported by the seat with no stress on the
lower body, while handle bars provide additional support. Feet remain
on the ground, keeping users stable and safe.
GO TO CROWDFUND, WHY, HOW, START
