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It’s going on two years since my diagnosis of MS. With the first year full of appointments and many lifestyle adjustments behind me, the second year has gone on to being close to the same. Like basically everyone else, once COVID-19 started, I began spending all my time in the house, unless I absolutely had to leave for an appointment that I was unable to have virtually. Now that a new year has begun and the weather is getting nicer, I want to take advantage of venturing outside and exploring as much as possible. Since the beginning, I’ve struggled with ataxia. Balancing, mobility, and sometimes just standing in place was and is often still very difficult. I still use a cane. In fact, I use it more now than before due to a bad fall at the beginning of this year. I also suffer from severe fatigue which requires the need to stop and rest frequently, during the day. Pins & needles, numbness, and sensitivity are also other major symptoms of mine. Before my first relapse and during part of my physical therapy in the first year, I would take frequent walks with my wife. We also enjoy taking our dogs for walks in the park and near the lake. Since they’re “geriatric puppies”, I don’t have to worry that they won’t keep up with me. Since the fall, I have been back in therapy working to regain some of my strength and balance. I’ve attempted a small walk recently, however, I immediately began feeling pins & needles in my feet and then they began going numb. The more I pushed it, the worse it got. It would be wonderful to spend more time outdoors walking around with my wife and the dogs. It would be a relief not to worry about how long I’ve been out and needing to get home or where to rest because of my fatigue or other symptoms.
I look forward to going on a weekend trip or a vacation again. I miss the beach and the ocean. I enjoy trying new things, and would love to try kayaking hopefully this summer. My wife and I also like going to museums and different exhibits, but the last time wasn’t as much fun due to my fatigue. It took us longer to walk around due to stopping for me to rest and eventually I was too tired and we needed to leave sooner than expected.
Aside from the outdoors, I do spend most of my time inside. I’m a huge fan of movies and am continuously working to increase my collection. I do not have just one favorite movie. There are too many wonderful options and I’m way too indecisive – we’d be here all day. I enjoy spending time with my 97-year-old grandfather, and we will usually watch a movie or two together. I try to pick something different every now and then to see if he’ll like it. It’s usually a hit or miss. Sometimes I think TV shows are better because the story lasts longer so I don’t have to start it over too soon. I don’t mind repeatedly watching shows and movies; I never get tired of them. My all-time favorite TV shows will always be Buffy the Vampire Slayer and Angel. My two more recent favorites are Supernatural and Outlander.
As I’ve been trying to get more comfortable with reading again, I was hoping to attempt starting the Outlander series. However, that has proven to be too difficult for me and I’m still at a young adult level. My comprehension and reading, and so many other skills are far from what they used to be. It has been very difficult for me to adjust to the way life is now and make it more suitable for not only how I am physically, but mentally as well. I do enjoy writing and there are times it’s a bit hard because my hands start hurting too much to hold a pen or I can see a difference in my handwriting when I can tell I’m getting tired and pushing myself. When I go back to re-read my work, the thoughts are sometimes jumbled together and there’s lots of errors. I keep finding it difficult not to compare myself now to my former self. I know it will take time, and patience is something I’m still working on.
Since I was a little kid, I’ve had a love of video games and now in my mid-30’s that has not changed. I introduced my wife to World of Warcraft a few years ago. Unfortunately, it’s been a little too much for me to handle and I have yet to regain the attention and patience to focus on everything going on in the game. I also have an XBOX One and like playing a variety of games from the Lego Star Wars to Halo, which is my favorite. I became a fan of the game and console when I played Halo 3 for the first time. I’ll still occasionally watch Red vs. Blue. Unfortunately, my wife gets motion sickness with first person shooter games so she can’t play those games with me as I had hoped.
To help with therapy and keep my mind sharp; also, to take time away from screens; I enjoy puzzles such as sudoku and logic. These are things I was doing prior to MS and when I found out that it would only help, I was thrilled! I try not to get discouraged when I get stuck or if it takes me longer than normal, but it’s hard not to notice.
I like cross stitching. It’s something I learned when I was little and it helps keep my hands busy. I try to stay as active as I can even while inside, although fatigue is my worst enemy. Provided I’m having a good day, I like to do yoga. The amount of time varies day-to-day. I have different videos I use thanks to Amazon Prime. With my balance and coordination not being the best, I have one in particular that allows me to be solely on the floor so I have no worry of leaning too far over one way or another and falling. Stretching in general is also helpful to keep my muscles from getting too tight and aching all the time.
I have been starting to get interested in photography again. With my cellphone, I’ve noticed just how amazing the detail and color is; everything that it can do compared to old phones and cameras. I want to capture moments that I will be able to share with others and continue to surround myself in frames and other artistic ways. It helps show me there have been, are, and will be many happy memories in life to remember and look forward to. Hopefully, ones that will be made with the help of the Alinker.
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
Together we'll make this work, in kindness and from the heart
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