Hello, bonjour from Vancouver Island, BC, Canada!
Thank you so much for your time in reading my story.
My name is Nathalie, I just turned 57 years old, and I’ve been dancing with Multiple Sclerosis for *over half* of my life.
** I say over half of my life, because there were a variety of seemingly unrelated health issues that would crop up when I was younger, and at the time we - doctors & myself - didn’t put 2 and 2 together because MS has such a wide variety of symptoms and affects every person differently. They don’t call it the snowflake disease for nothing - every single person is different!
I started with RRMS 25+ years ago, and managed to keep in fairly good condition for a long time after a massive flare that changed the course of my life overnight. After that, over the course of 2 decades, I knew the warning signs my body was sending me. I’d dial things down to adjust and try to keep any major MS flares at bay. I danced with MS and got to know it pretty well.
Shortly before turning 50, I hit the Secondary Progressing stage of MS. There was no more break periods as in the past.
Through the years, I kept exercising fairly regularly, eating as
clean as possible, managing stress as best as possible also. At one
point in time, I even took courses and became a Certified Group
Fitness Instructor.
From doing weight lifting, kickboxing (my all time favorite!), to cardio workouts, biking, walking, playing racquetball, etc, I really enjoyed exercising even if I was terrible at some of them (yes, I’m one of those crazy people! LOL) but you wouldn’t know this from looking at me now, especially since my MS ended up changing into SPMS - Secondary Progressive MS about 7 years ago. I've gained a lot of weight due to inactivity caused by having to cope with SPMS.
I’ve kept pretty stable at this increased level of disability,
however, I have absolutely ZERO life other than being homebound.
Depression and anxiety hit me very hard for a number of years,
which is totally normal and understandable. MS affects us mentally and
physically. I even felt suicidal at times (I’m ok now, no worries on
that front - thankfully). I’m resilient and thanks to my amazing
husband, family, friends, and God’s grace, I’m here and fight every
day to help improve our situation. I DO NOT GIVE UP. Together, we’re stronger.
7 years ago, both my husband and I became much more severely disabled within a month of each other. His heart failed and he ended up with a broken back.
All this has brought us even closer together, but it has changed us both in profound ways at the same time. The impact of chronic illnesses on families is devastating.
We’ve been through so much together, and we both want to do better at improving our health so that we can be stronger as we continue to age.
Isolation is the hardest thing to deal with. Like... seriously... the hardest thing. As painful as things can get, as debilitating as things can get, isolation is the hardest aspect of being or becoming disabled in my opinion.
I’m extremely limited due to on-off muscle spasticity, weakness, debilitating fatigue, nerve pain (oh and MS hugs too… those are absolutely brutal), relentless nausea 24/7/365 and the left side of my body, especially my left leg, is weaker.
I’ve been searching for a long time for a way that would allow me to
be more active physically that won’t wipe me right out within minutes
- Exercising regularly and having something to do that's
enjoyable is not just good for the body, it’s also
amazing for the mind to help manage depression, anxiety, stress and
help the body heal.
So why am I fundraising to be able to get an Alinker?
Aren't there other mobility options I could use? I've looked into all
of them, so here's the scoop:
- An electric wheelchair or scooter wouldn’t be very helpful at this point, as awesome as they are, because I’d just be sitting in a chair and ‘drive’ around in it.
That wouldn’t do anything to help me become stronger and healthier. It wouldn’t get my blood flowing or increase my heart rate etc. It’s not the purpose of those types of mobility devices.
It would also have to be electric ($$$) as muscles spasticity would
make it hard to wheel myself around manually, and with my husband also
severely disabled, it's just far too taxing for him to push me around
in one.
- A regular walker with a seat wouldn’t help me much either in
terms of exercise and health improvements. It would be like walking
with my cane: Ok for stability for a quick short distance, but not
much else, and it wouldn’t provide me with much needed ‘exercise’
because I’d have to stop to sit to rest constantly. So I'd just be
sitting around, waiting to get a bit of strength to continue walking.
I would absolutely LOVE to be able to walk without using up all of my energy and fill my lungs with fresh air from the beach nearby.
There’s nothing like the deeply healing properties that nature offers, but dealing with SPMS has kept me homebound for most of the past several years.
I knew that something needed to change ASAP - and so here we are:
As time passed, I kept praying for a solution that would allow me to walk around our quiet neighbourhood with my hubby. We rent in this area specifically because it is extremely quiet, cheaper than renting 'in town' and benefits us both (noise affects my brain/MS a lot).
Being able to walk using an Alinker, chat with passing neighbours and beach visitors, or go to the beach and playground down the street with our grandkids would be so amazing!
I haven't been able to do this in the 2 years we've lived in this
area and I'm done with being homebound! I need to go out! Please help
me keep what little sanity I have left!
This amazing Alinker mobility bike came up on my radar at first
when I watched Introducing Selma Blair (she was using one in her
documentary about her life with MS), and then MS fog got me and I
forgot about it until someone in one of the MS groups that I’m in
commented that she loved hers and it changed her life. This walking
bike would truly be a miracle for me:
The Alinker would assist me in improving my strength and stamina so that I don’t need to depend so much on my husband.
As I've mentioned earlier, he's also severely disabled and dealing with so much already, that if I can help lift part of that burden off of his shoulders, it would be soooooo amazing.
He's my caretaker, and he does so much to help me. I do as much as I can for him also, but the stronger I can be, the better for both of us. I call that a WIN-WIN! :)
I’m so excited about the prospect of being able to walk/bike freely again soon!! I haven’t felt so much joy in such a long time!
With YOUR HELP, a new exciting chapter is about to begin in our lives! Disability does NOT have to take away our joy. It put us on ‘pause’ for a long while, but we’re fighters and ready to go enjoy nature again!
I would be so thankful if you can donate what you’re able to give. Every single dollar will be so appreciated!
If you can’t donate, that’s totally ok too… I’d just ask if you could please share my fundraiser page so that others can help with the funds needed to make this a reality.
The more we spread the word, the faster I can take "Daisy" out on the road - I want to name my Alinker "Daisy" because its gorgeous sunny yellow color reminds me of the hearts of daisies that I have loved since I was a little girl.
Thank you so very much from the bottom of my heart!
Much love and blessings to you all xoxo
Nathalie
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
