Hi my name is Michelle and I live in New Jersey. I'm a mile outside of NYC. I have Primary Lateral Sclerosis. Try saying that 3 times fast. It’s a Motor Neuron disease that is similar to #ALS but not fatal.
Before PLS I worked and went to school. I had been at a company for 5 years, going from a temp position to a manager of my own team. After I was laid off I decided I wanted to go back to school. I had taken Culinary Arts at a local Voc_tech school after work but I wanted more security. I was 33 when I started school to get my A++ certification in IT Networking. I was lucky to get a job before I even finished school. I worked at a wonderful place for a month before the disease progressed from a nuisance to full blown progression. That was the last job I was able to hold down, and then came SSD and Medicare. Here's the kicker, because I worked hard I don't qualify for Medicaid (and by such a small amount it's not funny). That's why I'm here today asking for help.
Before PLS I was active. Camping trips to PA, driving to Florida to see my Grandma and other family and friends, trips to New England and traveling in general are things I love but are harder to do. I enjoy music and am a huge New Kids Fan..... Ok you can stop laughing now. I also enjoy P!nk and Halsey. Oh and Sugarland,Dolly,Kenny and Kelly Pickled. I have a wide music taste, just not sceamo. My sister is 13 years younger then me and I took her to a lot of concerts and that was a one and done. Lol
I loved skiing, exploring new cities and biking or roller blading at Liberty State Park. Get on the train and explore the different areas of NYC.
One thing this disease did give me was a hidden talent. I learned to craft. First was seeing. I thought my new puppy needed clothes and tried to make them...no. I'm not cut out for clothing. I can however quilt. I can also see items from most patterns, but I really hate clothes. I also learned to crochet and loom knit hats, scarves and Afghans. I have a Cricut and love making things for my family. I used to sell pieces and donate part of the proceeds to Rare Diseases and that's how I came up with the name Crafted For A Cure. lately diamond painting is the most I can do because of tendinitis in my shoulders and wrists due to falls and using walking aides for 6 years.
This is where the Alinker comes in. PLS is a degenerative disease. It effects my left side more and my left leg is very weak.
when I was diagnosed 6 years ago I had been walking with forearm crutches for that long, until last December when I had a bad fall. In addition to my leg injury I also have shoulder issues from using my crutches fighting to stay out of my wheelchair as much as possible, a spinal fusion and other herniated disks,Fibro and Type 2 diabetes.
After 6 years I have had several falls and issues and am in a wheelchair most of the time. In December I had a complete Hamstring Rupture in my left leg and that injured my hip, knee, herniated a disc in my back and I have constant swelling. I walk with a brace to keep my foot from flopping when I can walk. My main issue is I don’t have a wheelchair accessible vehicle right now so I don’t get out as much as I would like. When I do get out I have to worry about stores having a charged and available scooter. I miss browsing the aisles of a supermarket or going to a mall. I live in the Mall State and have been to 1 in 10 months to grab shoes to fit my AFO. Having an Alinker would help me be able to go shopping, be a better dog mom and social. Like many of us, I didn’t choose this life but I can try to adjust my lifestyle so I stay as healthy as possible for as long as possible.
I don’t ask for help... it’s an issue I have had for... forever. It’s hard to do but I’m asking for help now so I can keep walking, so I can exercise and feel normal again. I miss being around people and want to take my dog to the park, he is afraid of the wheelchair and the crutches so this may be the perfect solution for us both.
Feel free to follow my story on IG at CraftedForACure
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
