Accomplishments

I’m heavily involved in the spinal cord injury world, as my focus is to share information about research going on, resources for information, and creating content for others to learn more about what it’s like as a SCI survivor. Hence the reason why I write blog posts and volunteer so often. As in my last post about becoming an ambassador, I am an advocate for people with SCI and others within the community.

As an ambassador, MSKCT has provided me with a wide range of free, #researchbased resources to help #SCI survivors, family members, and others looking for information, including a toolkit for my position. To learn about the ways #SCI impacts depression, bowel function, sexuality, and more, visit https://msktc.org/sci. You can also learn how to become an ambassador if you visit their website, without adding SCI at the end.

My mom and I recently did a video interview with the Morton Cure Paralysis Fund (MCPF). “In 1995, Peter Morton broke his neck in a bicycle accident that left him paralyzed from the neck down and unable to breathe without a ventilator… Now, twenty six years later, with the help of dedicated donors and volunteers, MCPF has raised over $5 million for cutting-edge research in the United States and around the world.”

Devastated by the tragic accident, friends turned their hurt into hope. With little more than a dream, That All May Walk Again, they launched a small golf tournament in Morton’s hometown to raise funds for spinal cord injury research—and the Morton Cure Paralysis Fund (MCPF) was born.

Lately, they’ve been doing podcasts on all different platforms, interviewing others with SCI and people revolving around. During our video, my mom and I answered questions related to and about our experience after my spinal cord injury. It recently launched on YouTube and their website. You can view it by clicking on this link.

My biggest focus right now is on finishing my memoir for others to read. I’m hoping that it helps people along with sharing my story with others. Since I’ve been writing poetry, it’s been an easy way for me to develop my writing skills. It helps with creating in-depth content, metaphors, images and more. I suppose that’s why I haven’t finished it yet. I have been so into writing poems that I’ve kind of put my memoir aside. It’s difficult to not write poems, since I subscribe to the website.

Jenni

Update

Things have been going great at ABLE. After only seven weeks of intense working out twice a week, I now can sit on the side of the mat unassisted and move myself side to side and back-and-forth (almost like a sit up, only not while laying down). Also, if someone pulls my right arm forward on my armrest, I can pull it back by myself. These are all new things that I couldn’t do before ABLE. I’m very excited with my progress along with newly gained strength and can’t wait to see I can do from here on out. I posted some videos below.

Since being in the hospital to try to find the source of my edema, I’ve lost over 20 pounds of fluid. I guess they were right about my seizure medication being the source of my water weight gain. I feel so much better, and people have been noticing a significant difference as well. There is more fluid that I could lose over time, and I believe ABLE will help with that.

At the beginning of this month, I went to the orthopedic surgeon to get both of my legs checked out. Since I injured my left knee in the middle of 2018, it healed up for about a year after wearing a knee brace but has been bothering me for the past year. At the beginning of 2019, I fractured my tibia on my right leg. A couple weeks ago while doing ABLE, I believe I reinjured my right leg somehow. I’m not sure which part is injured I just know that something is not right about it because my leg spasms and was bruised. It also won’t straighten out.

After getting to my appointment, I had to wait 50 minutes to see the doctor. I talked to him for roughly 15 minutes for him to tell me that in order to see what’s wrong, that I would have to get an MRI and x-rays on both legs. Exactly what I thought before going to my appointment. Then I waited 45 more minutes for my transportation driver to come bring me home. I thought it was a waste of time, but then again, he had to check it out in order to make his decision.

The soonest I could get an MRI was 19 August. I have a follow-up video appointment with the orthopedic surgeon the second week of September. I’ll post an update after I get the results and whatever action he wants to take going forward. I also have an appointment with my pulmonologist at the end of this month. It’s just one of the yearly visits I need, just like a checkup. I usually have them for most of my doctors, either yearly or every other year. I have so many doctors for every need that I can’t even count them.

My family has been doing good. My sister’s birthday is August 11 and oldest niece’s birthday is August 16; she will be eight years old. My other niece will be 1 years old in October. Oh, how quickly they age! Other family birthdays will be coming up in October as well, including mine. Also, I have been getting outside and taking Brody for walks as much as possible. Although the temperature these past couple of months have been in the 80s and 90s with high humidity, which makes it a little and comfortable.

Avery and Madilyn beginning of July

That’s all for this month’s updates. I will update more next month as things progress.

Jenni

Showcasing Abilities

I remember this video like it was yesterday. Even though it was almost 7 years ago, I still feel the same to this day. I talk about showcasing the abilities of people with "dis"abilities. It's a concept that I've been sharing with others since my accident, especially during my public speeches. Also, a constant reminder to those around that there are misconceptions about those with disabilities. It’s about what disability means to me.  

Jenni

Hilarious Videos

Sarah Cooper is a comedian and author who describes herself as “not the normal demographic for TikTok”. Although when Trump handed her what she explained to be “liquid gold”, she decided to use it. She lip-syncs his worst comments from press conferences and creates the most hilarious videos that have now gone viral. She has now caught the attention of many people including the news and even Ellen DeGeneres. Here is her first original video created on TikTok and uploaded to YouTube:

Pain Is Temporary

There is more than one type of pain: physical and emotional. Dealing with pain is difficult, and we all have a way in which we do so. I found this video to be both inspiring and motivating. I hope it resonates with you too!

Jenni

Curing Paralysis

Those of us with spinal cord injuries all wish and hope that there was a cure for paralysis. We are now learning that there are ways around an actual cure. By using an electronic device, the people in this video are learning to walk again.

Jenni

Squirrel Watching in Minnesota

No need for an explanation on this video. To view it on YouTube click here.



Jenni

Using My Movement

I thought I'd show a video that was taken when I was at Gillette Lifetime Clinic for an OT appointment. In an earlier post, I talked a little bit about the environmental control unit called Relax II that I could run with my thumb movement. The pictures above are of the system and the micro light switch that plugs into it. The video below shows me pushing the switch and controlling it all by myself. A single tear started to roll down my cheek when I was doing it. This is the first time that I've actually used my movement to do something, even though it wasn't set up to anything. I was having trouble putting it on my blog so I uploaded it to YouTube. Check it out!



They let me take it home for a trial, but there's a slight problem. My thumb doesn't always cooperate so I'm not able to do it every time. Plus the switch is a little too sensitive so if my thumb is just a little bit tight it holds the switch down which makes me unable to use it. Hopefully when I get my new wheelchair they can mount something that comes around to my cheek and I can use it that way.

The picture below is of the page turner that I want to get. I can also use the switch to control that. Jenni

Motorcycle Ride Video

For those of you who may remember, last summer I took a ride in a motorcycle sidecar. I had someone take a video of it but wasn't able to put it on my blog. Well, I finally put it on YouTube. If you want to read the post that I did on it before click here. You can make the video full-screen by clicking on the button with four arrows at the bottom right hand corner of the video. If you want to view it from YouTube click here and it will take you directly there.



Jenni