Karen Landry hasn't added a story.
Hi! I’m Karen. Some of you may already know a little about me, but if we're just getting acquainted or reacquainted, here's a lot about me :) ... I'm a New England native, born and raised in a beautiful little town in the White Mountains of northern NH called Berlin (pronounced with an emphasis on the Berl part) where I spent my childhood surrounded by family, nature and breathtaking landscapes. After graduating high school, unsure of what I wanted to do, I decided not to pursue college (thankfully avoiding putting myself into crippling debt from the get-go). Instead, I spent a few years exploring the desert life in Scottsdale, Arizona, doing young people stuff and enjoying the dry heat. After a few years there, life took me to the Midwest, and since 2001 I've been living in a suburb of Chicago called Aurora, IL where I met the love of my life (and husband since 2011), Paul. We rescued an adorable and still mischievous white and orange kitten named Scrappy who is coming up on 14 years old. He is the best cat, though we are of the opinion that all cats are the best cats. The only downside is how extremely allergic Paul is to them. He says he doesn't mind and that he'll keep taking allergy meds and doing allergy shots for however long he needs to, but deep down we know that Scrappy will likely be our last cat.
When I’m not looking at cats and dogs on the internet, I'm usually listening to music. I have a particular fondness for metal, and most recently jazz and lo-fi, but really I've been able to find something I love in every genre. I also dabble in photography as a hobby with an introvert's focus on landscapes. There's something cathartic and healing about the process of finding and capturing a moment in time and being fully engaged in my surroundings. Hanging around outside, just enjoying nature. It's like a form of meditation. Even when I'm out and about without a camera, I often find myself mentally framing scenes in hopes I'll eventually be able to get back to that spot to capture it. I haven't been able to get out as much these days though, so I figured out how to edit my existing images into digital abstract art, which I find super fun. I'm also into bird watching now. Not that I needed another excuse to get outside, but birding doesn't require very much gear. Just my eyes or a pair of binoculars. I think I've seen all the birds IL has to offer outside of migration season and some of the rarer water fowl. Occasionally I like to pick up the random book, but I really have to be in the mood, and when it comes to movies I love suspense and horror. The scarier the better. I'll watch just about anything though, except sci-fi, and yes, I realize I might lose some of you here. I liked Event Horizon. That should count for something! I have a borderline obsession with True Crime stuff too, podcasts and the like. I guess the running theme here is that I love the outdoors and when I’m indoors, well, I love to scare the crap out of myself with horror movies and crime shows.
If you're interested, you can see some of my abstract art on Instagram and some of my photography on 500px.
Along with all of these things about me, there's also Multiple Sclerosis. While I was in the 1998-2001 Arizona stage of my life, I began noticing some unusual and bothersome symptoms. Sometimes when I would walk, my legs would feel as though they were falling asleep from my hips down. I'd have to stop moving to allow the intense tingling and numbness to subside before carrying on. I had neck pain and headaches too and I thought maybe I had pinched a nerve after a fender bender where my car was rear ended by a hit and run driver. Luckily it wasn't serious. I didn't feel injured at all. My car was no prize either and still ran fine aside from the trunk needing to be bungie corded shut. But I was also overcome by tiredness. I just figured I was working and maybe partying too much and needed more rest for whatever reason, but it never really helped to get more sleep. It was a persistent kind of fatigue. As the years went on, these symptoms would come and go in varying degrees of severity, some days better than others. I still managed to go on some pretty serious outdoor hiking adventures thinking that I was just out of shape and needed to push through the pain to get stronger. A weakness to overcome. I adapted to the changes as they happened and didn't put much thought into it being anything too serious that wouldn't eventually go away on it's own. So, life went on that way. I was still young and carefree with enough distractions and decisions to be made to keep me from worrying too much about it.
In 2001 I moved to Illinois. Another new beginning and all the excitement of new places to explore and new people to meet. I settled in, found a decent job that I liked, bought a new car, then eventually a new house. Life things were happening at an unstoppable life pace. 2002 is when the symptoms were difficult to ignore again along with a couple new ones that I couldn't explain. My legs were now tingling intensely not only when I'd walk but also when I'd tilt my chin toward my chest to look down (I didn't know this had a name - Lhermitte's sign). The headaches were back with a vengeance, I was always exhausted and now my stomach was a mess. I was also having random panic attacks from feeling so unwell all the time. These symptoms waxed and waned as usual.
By 2003 I knew it was time to see a doctor because I was finding it difficult to get through a workday. Initially they thought I needed to see a physical therapist for my legs and gave me an anti-depressant for my stress which they thought might be the cause of my gastric issues and panic attacks. I gave that a go, but the symptoms persisted and I hated the way the anti-depressant made me feel. The visits to my doctor continued and after they piled up high enough, I was finally referred for an MRI and then to a Neurologist in 2004. The results of that MRI showed the unmistakable Multiple Sclerosis (MS) lesions present on my cervical spine. I didn't know what MS was and as the doctor began to explain it, the typical course of the disease, about getting a lumbar puncture to double check the diagnosis, and the need to begin treatment as soon as possible, I found myself in disbelief. It wasn't until I got home and let this news sink in that I became truly scared. I didn't know what to do except hope that the doctor was wrong, so I scheduled an appointment with another Neurologist to get a second opinion. He confirmed the diagnosis of MS. The relapsing remitting kind based on my MRI and history of symptoms. That was it. My world had changed, but there was also a sense of relief that I knew what was wrong with me. I accepted it and tried to focus on managing it. For years I thought I could avoid medication by keeping my stress level low, eating well and getting plenty of rest. The symptoms continued, but now that I knew why they were happening they were less troubling to live with somehow.
Skip ahead to 2009. The vision in my left eye went wonky. There was pain when moving my eye, a foggy haze clouding my sight and a loss of color vision in that eye. I couldn’t see. Optic Neuritis set in and all I could do was take a course of oral steroids and wait for it to subside. From what I've been told, optic neuritis is often one of the first symptoms people diagnosed with MS present with. Not in my case though and it had never occurred to me that MS could impact my vision without warning. I have since recovered most of the vision in my left eye, but things still look slightly dull to this day.
In early 2012, for a couple of days I noticed my vision was getting weird again and it hurt to look around. There was a feeling of weakness throughout my body but more so on my left side. Then one morning I awoke to double vision and, most alarmingly, my eye ceasing to move when I would look around. The wonkiness had returned. But now it was worse. Like cartoon character wonky. Each pupil moving independently from the other. I was also feeling extremely weak and unstable and out of control of the entire left side of my body. Breathing even felt like it was taking conscious effort. The speed at which these symptoms arose was unexpected. I always figured I'd know when things were getting bad and I'd be able to take a step back to rest and recover. That's not how it went. My husband took me to the ER and I was hospitalized for a few days to be monitored and given a few rounds of potent IV Steroids to calm the inflammation. A new MRI showed brain lesions and additional lesions on my spine. This was a major MS relapse and at the strong advice of my doctor, I began my first disease modifying treatment since being diagnosed. It would be a daily injection so I had to get over my fear of needles pretty quickly. I recovered for the most part over the next couple months, but I still experience residual symptoms from this flare up. I wear prism glasses now as my eyes have trouble keeping the world in focus. The strength in my left side, my energy and my stamina never fully returned. I had to reduce my hours at work to part-time rather than full-time. I continued with the injections for a few years, despite the painful welts each injection would leave for days, but my MRI's were still not looking great, so I was switched to a new treatment that was, thankfully, just a pill I could take daily. The flare-ups continued, but never as severe and my MRI's were mostly stable. Despite the treatments, I still found myself needing to change roles at work to something less cognitively and physically demanding. Cognitive tests would reveal a decline in my processing speed and working memory that's more susceptible when I get fatigued.
In late 2017, I realized that as time had passed I had been declining in function little by little. Some of these changes only I would notice, like feeling foggy headed, sad, anxious, extra fatigued, weak, in pain more often than not, gross bathroom stuff, and generally unwell, like I might be on the fast track to giving up the ghost. Other changes my husband would notice. Things like forgetfulness, confusion, dizziness, balance issues, trouble staying focused, mixing up or not being able to find words, trouble following tv shows, movie plots, conversations, stuff I'd read, and my overall lack of energy. I was no longer able to will myself through a full day or deal with normal life stresses with any kind of grace. I was uncharacteristically moody and frustrated, always exhausted, finding little joy, completely overwhelmed and struggling.
By the beginning of 2018, I needed to step back from my job to work on regaining, or at least maintaining, my health. It's nearing 2020 and I'm noticing improvements now that I’ve started another new medication, but I'm still not anywhere near where I want to be. My stamina is still extremely low and fatigue continues to be my most difficult symptom. It progresses throughout the course of the day and with more fatigue all the other symptoms intensify too. I also developed tendonitis in my hip which, when inflamed, makes most things very painful to do, like walking, sitting and even standing. I completed physical therapy, do the exercises at home now and I take a weekly Pilates class. I still have to take care to not put too much stress on it and avoid activities that might irritate the area. Getting out of the house now usually involves a medical appointment or going somewhere with different places to rest than my living room. Coffee shops. Small forest preserves. Sometimes just a scenic drive. I love doing those things but I want more.
That's why I think an Alinker is the perfect tool to help. I need to keep going and get back to doing those things that I love. I want to get back out with my camera. I stopped bringing it with me because it became too heavy to walk with or even hold. I want to be able to walk longer distances and know I have support for when that pain or fatigue kicks in. I want to be able to conserve energy for the rest of the days tasks. We used to travel a lot, and I want to travel again and see our National Parks and know I can make it an enjoyable experience. I want to adopt a dog someday, where we can both give it the outdoor exercise and enrichment it needs. I want to regain the confidence and independence I once had. I want a chance at a more active and fulfilling quality of life. With an Alinker and your support I know it will all be possible.
Thank you so much for letting me share my story and for your time, consideration and generosity, whether it be sharing my campaign or making a donation. It all helps me to reach my goal, brings further awareness to MS and it’s impact and helps to continue spreading the word about the Alinker to anybody whose life it can change for the better. Should I reach it, any funds raised beyond my goal will be paid forward to other Alinker campaigns. Your help and kindness is greatly appreciated!
My sincerest gratitude,
~Karen
#RadicalGenerosity #AlinkerFamily #MSWarrior #RRMS #MS #MultipleSclerosis #ActivateYourBrain #KeepMoving #Alinker #MobilityAid #WalkingBike #Strength #Love #Kindness #Support #Agency #OvercomingMS #MSisBS #GameChanger #RallyForGood #RallyForEachother #RallyBecauseWeNeedIt
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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