In November 2022, I had a severe case of Rhabdomyolysis following a pretty average day, and was hospitalized. This began the journey of finally receiving a diagnosis for a chronic illness I was chasing for the last decade. Since age 17, I have been suffering from flares of symptoms ranging from severe nausea and GI issues, to chronic migraines and vertigo, to joint pain and subluxations. In 2019, my symptoms became increasingly worse and appearing daily, changing from something more manageable, to something I desperately needed to find an answer for. I was finally diagnosed with an RYR1-related myopathy, likely Central Core Disease or Multi-Mini Core Disease, as well as Idiopathic Hypersomnia, a sleep disorder. Between these two diseases, I have lost a significant amount of muscle mass and am unable to rebuild muscle, my muscles are constantly contracting and unable to relax which causes severe pain and fatigue, I cannot walk more than 10 minutes at a time without my legs giving out and falling, I fear pushing myself too hard because of my high risk of a recurring Rhabdomyolysis episode, I cannot stay awake throughout an entire day most days and require naps, and that's just the start. Additionally, following a COVID infection in the summer of 2022, I fell seriously ill and developed long-covid related symptoms such as dysautonomia, severe brain fog, post-exertional malaise, and heart palpitations and arrythmia. I am currently under investigation with a cardiologist for heart dysfunction and a specialist for hypermobile ehlers-danlos.
After my initial hospitalization in November, I lost the entirety of my muscle function and had to retrain myself to walk and complete tasks. I temporarily moved in with my parents so they could be caretakers for me, and I entered physical therapy and improved over the course of 3 months - this allowed me to get back to some semblance of a normal life, but I would never be able to do the things I used to, like hiking, rock climbing, biking, etc. Shortly after I felt an improvement with PT, I was hospitalized again in January for 10 days with severe abdominal pain, which was later discovered to be a result of my muscle disorder, which was causing my pelvic floor muscles to contract so severely that I had to receive morphine at the hospital. My body has now settled in to my new normal - daily pain in my legs, little ability to safely walk farther than 10 minutes without needing to sit, little ability to be outside for an extended period of time over 75 degrees, frequent cramps and spasms, and tremors in my hands and legs. This is not only impacting my recreational abilities, but also my mental health and independence. Something as simple as stirring a pot of rice causes my hands to cramp and my wrists to have sharp pain, I have to frequently sit and scoot on my butt to get down my stairs, I am not able to get out and socialize like I used to and have made many adjustments to make my life more livable.
I have been searching for alternative mobility devices that would allow me to be more independent but also have the safety of a seat - my rollator does not allow me to sit and move at the same time, hindering my ability to get around well. As soon as I discovered the Alinker, I knew this would be a tool that would help me regain mobility in a way that felt almost like I used to be. It would also allow me to work my leg muscles in a way that is safe and will prolong my health. I have been dreaming of going on a long walk, of keeping up with my friends, of trying to run again. The Alinker would give me so much freedom and joy, and I am hoping to find support in obtaining one. As I continue to go through the medical system, I am hoping to keep costs low and not accrue any medical debt. It would mean the world to me if you would contribute to my Alinker campaign to help me fund a transformational mobility device.
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
