Guest Blog Post by Brody III

I’m enjoying the weather right now, although it’s getting a little hotter and I don’t like to overheat. It makes me pant and I can’t go as long on walks with my mom. Plus, I’m getting a little older, and I’m unable to go as far as I used to when I was a pup. I turned nine in December.

Bailey and Casey

My mom’s dad’s dog and my best four-legged friend, Bailey passed away earlier this month. He was a black lab. I will miss him so much! My mom misses him also. Although nothing can replace him, I now have a new best friend. His name is Casey, and he is a pocket beagle. He is six months old and just my size. When he comes over, we love to play in the backyard. He plays with all my toys and lays in my beds. Since I’m older than him, I only like to play for a little while. Then just like humans I like my space and time to myself.

I’ve been enjoying my time lately by sleeping on the couch, going for walks, and playing with toys. I only chase after a toy once, but I don’t know how to play fetch. My favorite thing is getting attention from anyone who will give it to me. I love to be petted and scratched on my back. Although, I only like it for a little while, and then back to more independent time on the couch or in one of my multiple beds. I find it comforting to bury my head against my bed, couch or under a blanket.

Me Sleeping on the Couch

Brody

ABLE Program

The other day, I went to Courage Kenny center for an assessment. I was there for four hours, from 12 PM-4 PM (not including the drive there and back). They have a program called ABLE there that helps people with certain types of disabilities. They are brain injury, cerebral palsy, multiple sclerosis, spinal cord injuries, stroke and other neurological diagnoses. The program of exactly what they do is described in the next paragraph in a quote taken from their website:

“If you are living with paralysis or a neurological condition, the ABLE: Activity-Based Locomotor Exercise Program, may help you. ABLE is based on the most up-to-date scientific and clinical evidence. It’s designed to speed up recovery after a spinal cord injury. The objective is to help your brain and spinal cord relearn motor patterns associated with standing and walking. The ultimate goal is to increase your mobility and improve your health.”

The Treadmill

In my assessment, the PT and OT first brought me into a room that had a treadmill in it. They told me that if I were going to do it, I would get up into a harness and onto the treadmill. Then they have people who would assist me in walking on it. I decided I would wait on getting up on the treadmill because my ventilator tubing (8 foot) wouldn’t reach from my chair to me standing on it. I knew this for sure because I had an assessment a couple of years ago and tried but it wouldn’t reach.

Then they brought to me into the assessment room and first asked me a bunch of questions. Most were on a scale and included questions about my history, feeling, movement, activity level and many more. Then they transferred me to a memory foam chair. First, they laid the chair back all the way, took my blood pressure three times in a row, and then sat the chair up fast and took my BP 10 times in a row. They wanted to see how my BP would hold up in an upright position. My BP went down slightly, but not enough to where it was concerning. This was important because since I have a spinal cord injury, my BP usually is on the low side, and I need to take medication for it.

After this, the OT took measurements of me and then tested my movement. She had a device that beeped when something pressed against it. It’s a way to measure movement based off if it made noise, how long the beep was and how hard the pressure was. Out of all the places they tested, I was able to make it beep once when I tried to pull my right arm back. After doing the program for a certain amount of time, they will revisit this test to see if I’ve improved on movement.

In order to check my balance, they transferred me to a table mat. I sat up on the edge of it to see if I could sit up without assistance. After being held for a few minutes, I was able to balance myself for about 15 seconds. I used to do this with my physical therapist on the edge of my bed. Also, they checked to see if I was able to use my ab muscles to pull myself forward and back muscles to pull myself back. I was able to fire my back muscles, but not the front.

Table Mat

The last thing they did before transferring me back to my wheelchair was had me stand up. There were 4 people that helped, one in back holding my backside, one in front holding my knees, and 2 on each side of me grabbing under my armpits. Simultaneously, up I went for about 10 seconds until my left knee buckled. It still hurts a little sometimes from when I injured it a few years ago standing in my wheelchair. Although I've been wearing a knee brace at night and that's been helping.

I believe in this program and have proof from a friend of mine that’s in it that it works. His injury is below mine and not on a vent but is paralyzed from the shoulders down. He’s been going there for over three years and has gained a lot more movement than he had before. He used to use a sip and puff to drive his wheelchair like me, but now he can move his arms enough to drive his chair with a joystick. He also said there were other people who have gained more movement since starting. These are just a couple examples of the benefits that the ABLE program has.

Overall, it was helpful to do the assessment to see where I’m at now and how far I can advance in the future. When I start, I will be getting on a regular schedule of twice a week, for 2 ½ hours at a time. If I were going to do the treadmill as well, I would be there for longer. The first session is for 6 weeks in a row and then they will assess me again. I can’t wait to see how much I progress over time. I’ll keep everyone updated as time passes!

Jenni

Patience in Life

In my situation, it takes a lot of patience in order to live a happy and fulfilling life. It’s naturally an essential part of daily living, but especially when I have little to no ability to do things on my own and rely on others to do them for me. Having patience means being able to wait calmly in the face of hardship or frustration, so anywhere there is some-i.e., nearly everywhere-we have the chance to practice it.

We give ourselves the power to choose how to respond to specific situations when we are patient. It allows us to stay collected no matter what is happening. I’ve learned this throughout my life of being paralyzed because of my needs from those around. I need to wait every time I want something done. One thing to remember is that patience puts us in direct power of ourselves. Along with this, there is no more influential an aid to success then confidence.

So, how does one practice patience? It seems that at an early age we are told that patience is a virtue. However, very few of us are ever taught how to be patient. Patience is something we constantly do, not something we have. The more we practice it, the more patient we become. I know I need to remain calm throughout every obstacle that comes my way in life. Included with that, it’s only through patience that we truly learn.

Jenni

Donating My Hair

The other day I got a well needed haircut. It was a couple inches past my elbows. The last time I got it cut was almost a year to date. Last year, I wrote a post that said that I was going to get 10 inches cut off and donate it to locks of love. It was down to my elbows at that time. Although I ended up just getting 4 ½ inches cut off. This time I got 10 inches cut off and have yet to send it in to locks of love. It will be my fourth time doing it.

The last few times I’ve donated it, my hair afterwards was above my shoulders. This time, my hair was so long that it’s still shortly below my shoulders. It’s so thick and healthy now! It always seems so short once I get it cut, but my hair grows so fast. I always need to remind myself that it’s just hair and it will grow. Also, that I am doing it for a good cause.

Alopecia areata, cancer radiation therapy and severe burns are just some of the reasons why someone could lose their hair. And hair loss is not just a cosmetic concern-it can also seriously affect someone’s mental health. Hair donation gives people a chance of high quality, free, natural hair wig for free. It can also help someone restore emotional balance and regain self-confidence.

Locks of love is just one of the organizations that accept hair for donation. Some places require 12-14 inches or more of hair, but most require a minimum of 10 inches or more. There are some that only require a minimum of 8 inches or more. I like to do at least 10 inches because I have the stylist layer my hair, and when you donate it, they separate the longer and shorter pieces. Locks of love requires 10 inches or more. Also, if you send it in yourself, you get a laminated certificate saying you donated.

Jenni

COVID 19

Now that COVID vaccines are available, I feel more comfortable getting back out into the world. Before, I was so worried about getting the coronavirus, especially in my situation. It’s such a big risk being on a ventilator if I were to get it, that I was avoiding most people, especially crowds. I’ve been staying home most days (except for my daily walk and roles with Brody).

My nurses are still required to wear masks, even if they are fully vaccinated and I am too. My nursing agency is going by the state guidelines and until they hear anything otherwise, N95 masks and shields are required. It will be interesting if, and when they tell people they don’t have to wear masks anymore. I doubt it will be anytime soon though. It’s difficult for me to wear a mask because it’s hard to see my screen on my wheelchair. Also, since I use a sip and puff to drive it, I need to put a hole in it in order to use the straw to drive.

Good news is studies show that at least 50% of eligible Minnesotans have at least one dose of COVID 19 vaccine. And now that the governor has opened it up to 16+, even more people are signing up. It also means that spots are filling up, and there aren’t many appointments available. That’s why I had to get mine done so far away. My second dose is this coming Friday and then I will be fully vaccinated!

Jenni

Update

On Friday I had my first dose of the COVID vaccine. I ended up getting the Pfizer one which is two doses. My next one is scheduled for three weeks from Friday. I set the first appointment up about a month before it, and the only place nearest to me that had availability was regions hospital. Regions is in St. Paul which is about 30 minutes away from me. It’s actually connected to Gillette Children’s Hospital; that is where I spent over five months after my accident. Good thing is I didn’t have any side effects from it.

A couple weeks ago, I ended up with a respiratory infection. The reason I knew I was sick was because I had to constantly be on oxygen (I’m usually on room air). Also, my nurses were suctioning me more frequently and my secretions were colored. They were able to determine that it was 50% staph infection and a mixture of a couple other infections with a sputum culture. I was put on an antibiotic for 10 days and it’s all cleared up now. I’m glad that it wasn’t anything bigger than that being how sick I felt.

One positive thing is that since I’ve been off my seizure medication (Depakote) after my recent hospitalization, I’ve noticed some significant loss of water weight. It’s pretty much everywhere, especially in my face, arms, legs and stomach. My hands are where you can see it the most. They used to be super puffy and have a lot of pitting edema. Pitting edema is something that I had a lot of in my body. It is when a swollen part of your body has a dimple (or pit) after you press on it for a few seconds.

I’m so happy that it’s helping me, and it’s only been a few weeks. I can’t wait to see how much more I will lose down the line. It will be a huge transformation for me. I still have a video appointment with the nephrologist soon to talk to them about how I’m doing since being off the medication. I’ll be glad to report the good news to them.

For Easter today my sister, her boyfriend and my new niece came over to visit. I can’t believe that she is now five months old! My other niece is now seven years old. I love being on an aunt because I get to be the fun one, I get the distinct honor to spoil them, and they can come to me for advice. I’ve also always loved having aunts for the same reasons.

Jenni

Past Pets and Moves

Corky

When I was born, my parents had a Springer Spaniel named Corky. Unfortunately, when I was a year or 2 old, he was in a car accident. It led to some complications later, and he ultimately passed away. I don’t remember much about him; I just have pictures of him and me when I was a baby. He was my first introduction to dogs. My parents also had a couple of hermit crabs that lived on the kitchen table. That was when we lived in Grand Forks, North Dakota.

We moved to Minnesota in 1993 into a duplex, when I was 7 years old. I started school here going into 2nd grade. About a year later we moved a couple blocks away into a house. That's when the pets started to come in the picture. I was in 3rd grade and 9 years old, when we got a cat and named him fluffy. We also got a lop-eared bunny rabbit we named Bo (short for Bojangles). I remember that both me and my sister had gerbils that we kept in our rooms. Mine was named snowy and it was albino (white), and my sisters was named stormy (Brown).

Fluffy

When I was in third grade, my parents got a divorce. My mom, sister and I lived there for another year and when I was going into 4th grade we moved into apartment. Unfortunately, they didn’t allow bigger animals, so we had to give both our cat and rabbit away before moving. Also, at that point my gerbil had died but my sisters was still alive, so he moved with us. While living in the apartment, we had a painted turtle that we named lightning. Both of us each had one hermit crab with painted shells as well. The turtle and crabs didn’t last very long.

Neke

We lived there for 1 ½ and then moved into a duplex. Although we wanted other animals at first, my sister and I settled for a beta fish, one for each of us. Then, my sister got another lop-eared bunny rabbit that she named Isabel (Izzy for short). At age 10, I got a ferret that I named Neke and I had him until he died at the age of 8. My accident was when I was 16 years old, and while I was in the hospital my mom and sister moved into a townhouse, one that was listed as handicapped accessible. I remember them bringing Neke to visit me while I was doing my rehab therapy at the hospital.

Rio (yellow) and Cole (gray)

In the beginning of 2005, we moved into the house that I live in now. It’s been completely remodeled to my every need. While living here so far., we’ve had 3 parakeets (first was Dakota; after him came Cole and Rio) and 2 cats (Ty and Toby) all of which passed at some point. Then, in September 2012, I got my dog Brody at 9 months. On December 20, he turned 9 years old and has been my buddy ever since. Every animal that we’ve had, I’ve learned responsibility, gained more compassion, and felt the love in return. I’m sure in the future there will be more pets and possible moves to come.

Toby and Ty

Brody

Jenni

Recent Hospitalization Due to Fluid Retention

 At the beginning of the month, I got Botox injections in my neck again. I’ve talked about getting it in the past, and how it’s benefited me. I do feel a difference once they give me the injections. My muscles get looser, I’m able to move my head more and I don’t have as much pain as usual. The downside to getting Botox is that I need to get it every three months for it to be effective. Also, for me, my neck gets tight so quickly that it only really lasts about a month.

A few Thursdays ago, I had a video appointment with a nephrologist. Over the past couple of years, I’ve been talking to several different doctors with all types of specialties, trying to figure out why I have so much edema (fluid retention). Most of them have narrowed it down to one problem, low albumin. Here’s a definition of how low albumin causes edema. 

“Proteins in the blood tend to pull water into our blood vessels (acting like a "water magnet"). When the level of protein in the blood is low, water may leave the blood vessels and collect in the tissues. Water in the tissues is called "edema".” I’ve done multiple tests that look at where I might be losing protein, since I eat enough of it and also drink a protein shake a day. There is medication that you can take to help raise it, but I haven’t gotten to the point yet.

One way to shed the water from my tissues and help with edema is to take potassium-sparring diuretics. They are designed to help reduce fluid levels in your body, without causing you to lose potassium, an important nutrient. Although one side effect to going on a diuretic (otherwise known as Lasix) is that it can cause low blood pressure. In fact, many people take it to lower their blood pressure as they cause your blood vessels to relax.

Unfortunately, due to my spinal cord injury, I have low blood pressure. I’m actually on a medication to help raise my blood pressure, so going on Lasix is a huge risk to me. Although the nephrologist that I spoke to said that since I basically tried everything to help get rid of my edema, she would want to see how my body would react to me going on some sort of diuretic. In order to do so, she wanted me to go into the hospital electively and they would be able to monitor me closely while attempting to shed all the fluid in my body using diuretics through an IV.

They happened to have availability a week after my video appointment for me to go in and I would spend at least three days, if not more, to help achieve this. Afterwards, it would almost be like starting fresh, with little to no edema and she could see if I gain it back, how long it takes, and then figure out an action plan from there. I’m excited but nervous at the same; I want it to work, but I don’t know what side effects I’m going to endure. 

**The beginning post was written the day that I went into the hospital, but I never got a chance to post it. Here is an update after being in the hospital.

Upon arriving, I was admitted to a floor that specializes in nephrology. I also met with neurology, cardiology, internal medicine, endocrinology, infectious disease, pulmonology, urology, and the general doctors on the floor. Each doctor looked at different parts of my situation to try to rule out what could be causing the swelling.

As each day was passing, they became closer to narrowing it down to what it wasn’t and what it could be. I spent a total of 12 days in the hospital, more than I expected, but enough for them to narrow the problem down to two reasons. One would involve neurology, and due to one of my seizure meds and the other involve cardiology, and due to a rare condition.

They took me off one of my seizure medications called Depakote and wanted to follow-up with me after a few weeks. This would be to see if it would help with me losing some of the water weight. After being off it for a few days now, I think it’s helped a little bit. I noticed that I’ve been peeing a lot more, which is a sign that I’m losing fluids.

If this doesn’t work, then the only other thing they narrowed it down to is a rare condition called capillary leakage otherwise known as Systemic Capillary Leak Syndrome. It’s when fluids or plasma leaks out of your capillaries into your tissues. It results in low blood pressure and can be dangerous, if not treated. The reason why it’s so rare is because there are not very many known cases of it and there is no known cure.

I’m hoping that it’s just my seizure medication and not the latter. Although since being off the medication, I have seen an improvement in my weight, so that’s a good sign already. I will keep you updated as time goes by.

Jenni

Continued Post

After the first day of standing again, I stood 10 more times for 30 minutes each out of the next 11 days. Although, on the evening of the 11th day when I got back into bed, I noticed that my left knee started hurting again. Each day since then, the pain has been off and on. Because of it, I've had to hold off on standing again.

There have been many of those days that I haven’t been able to do range of motion again because of it. I think what happened is that I may have pushed myself a little too much. I guess I was so eager to stand again after not doing for so long. Also, it felt great while standing and helped aid in changing position during the day along with fluid retention.

I’m thinking that the cortisone shot in my knee did help this time, since I was able to stand so many times afterwards. One unfortunate thing about cortisone is that there is concern that repeated shots might damage the cartilage within a joint. Doctors usually limit the number of cortisone shots into the joint. It’s typically shown that you shouldn’t get them more often than every six weeks, but no more than 3 to 4 times a year.

Other than staying off my feet, I have also been staying indoors most of February. The weather has either been below 0°F or in the single digits for a few weeks now. It’s not ideal whether for me to be outside, as my tubes can freeze, and my body can’t regulate its temperature. Today was 25°F and I was able to take Brody for a quick 15 minute walk down a couple streets. He was so excited to go and then crashed on the couch when we got back home. I haven't seen him like this for a while; he must have really needed the exercise.

Over the past couple days I created another abstract painting. It looks pretty similar to a lot of my other ones, only with different colors. I've been doing more smaller pieces, as it takes me at least an hour to get one done and my neck gets sore when I work on it. I posted a picture below.

Jenni

Standing at 90° Again

Almost 3 weeks ago, I got a cortisone shot in my left knee to help with the pain after injuring it again. I had gotten one before when I first injured it 2 years ago, but it didn’t help. I thought I’d try it another time to see if it would work. My doctor told me it would take about 2 weeks were to take effect; but I felt relief after one week. Recently, the pain started coming back, but only when my leg gets twisted a certain way or if my knee is touched in a certain spot.

When I saw the orthopedic knee doctor to get the cortisone shot, I asked him about standing. It’s been over 2 ½ years since I’ve stood in my wheelchair, all because of my knees. He said he doesn’t see a reason why I shouldn’t be able to stand, unless I was in a lot of pain while standing. I was under the impression by the previous orthopedic doctor that I saw that I shouldn’t stand. To me, this was great news!

A few days ago, I tried standing. Within the first 2 minutes, I made it all the way up to 90° for 30 minutes. This is amazing news, considering I’ve been holding off on the off chance that something could happen to one of my knees while standing. Even better, I have been standing every day since for 30 minutes since. I check my blood pressure about every 5-10 minutes just to make sure it’s not dropping.

There are a lot of benefits to standing for someone with a spinal cord injury, especially in my situation with such a high-level injury. Standing is the ultimate pressure relief because it helps prevent pressure sores and promote skin growth. It also stretches hamstrings and other muscles which results in less muscle spasms. It helps with stabilizing blood pressure, reduces extra fluid in the body, bowel and bladder function, increases overall well-being and enhances quality of life.

Although it gives you more stamina and aids in better sleep, for me it’s like doing a full workout, so it wears me out and I can get really tired. I’m definitely going to continue trying to stand every day for at least 30 minutes. I’m glad that I decided to try it again!

Jenni