I have been a quadriplegic most of my life. This is how I do everyday living for the life I've been given. I am also a Christian that continues to study, and preach, God's Word and work to God at all points in life.
Last time I was in the Emergency Room they put me on a Bed and I layed there for hours while like six people had a meeting about what to do next but I think that it is because they do not get a lot of people like me who need Care like this and they do not know what to do to make it work.
I really do not like getting the Tube inserted and last time they almost could not do it. Once they get it in I get used to it being there. The same thing happens to me when I go to the Emergency Room and it takes them hours to do anything because they have to figure out how to do it first. For me I Spasm a lot when they they try to do things like change my Catheter and things like that so I know what you mean.
One of my relatives has had multiple sclerosis since 1991 and he is now profoundly disabled and has to use a wheelchair to get around. It has been an eye opening experience to see how even doctors and their office staff treat him and are simply not set up to deal with a chronically disabled individual. For most people, they only experience severe disability at the very end of their life or for a brief period of time after an accident or after an operation. The world is not geared toward people with long term disabling conditions.
Your observation is unfortunately very correct. That's why I do these videos and try to speak to medical students of any career path in college. However, as academic calendars are short on time, I have a hard time getting in.
Hey man - I’m so sorry to hear what you’ve been going through. Glad to see that you’re back home at least. I’ll be praying for you and that the symptoms you’ve been experiencing would gradually start improving. You have such a positive attitude and I’m impressed you were even able to crack a few jokes in this video with everything going on. Very cool shirt and God is with you.
That’s good. It’s no fun being stuck in a hospital for too long. My uncle used to joke that he could only count the dots in the ceiling tiles for so long before it starts to get old.
I have a horrible problem with autonomic dysreflexia and they’re always trying to lower my blood pressure like they would a regular person..they just don’t get it. Anyway, I’m glad you seem to be ok and are here to do another video.
@@morgancalvi6675 The first time, it was really high, like 190/147, until they started relieving my stomach. The second trip was okay, but the third went from unable to find up to around 199/170.
@@TheQuadLife oh no! You know and I know a quad’s blood pressure should be low...like my normal is around 90/50 or 90/60. Lately it's been anywhere from 133/77 to 214/101. Nurses...NURSES...say well, 137/77 isn’t too bad...for a quadriplegic!!!??? It makes me wonder just what they’re teaching in school today! I’m on beta blockers because I guess the nerves coming off C4 control heart rate and mine’s like fast with almost no rhythm. I attribute the autonomic dysreflexia to my supra pubic catheter and my leg/hip amputism.
I have the same problem with Autonomic Dysreflexia and my Blood Pressure too and I Spasm a lot when they try to do things like change my Catheter. There is really nothing you can do about it and it is just how my Body reacts to having something done. I do not feel Pain but I get this instead of Pain.
With Medical Equipment your Tubing can become Disconnected and I have had that happen to me too and with my Catheter and I have no Function so when it becomes Disconnected I am not able to do anything and I need to get reconnected again and I have had to go to the Emergency room to get me reconnected and up and running right again and it is really scary when it happens and it can happen to me again at any time but I live close to the fire department and Paramedics and they know about my situation now so they can get here fast.
Yes you need to have Backup Equipment and enough Supplies to do your Care because you need it and something always needs to be done and something can happen at any time. It is great that you can Breathe on your own that long in case you have problems with your Breathing Equipment and something needs to be done and you can take in a Breath between what your Pacemaker does to make your Voice stronger. With Medical Equipment something can happen to it at any time so you need to be prepared for it when it happens I found out because you need it to work for me.
My diaphragm does spasm sometimes and that results in a deeper breath when my pacemaker stimulates at the same time. Otherwise, I do a little of my frog breathing between breath stimulation to have more air and speak louder. Those are the only ways my breath changes.
He can Breathe on his own for a short time so he could probably take an extra Breath between what his Breathing Equipment is doing and it would kind of being able to take a deeper breath and get more Air to make his voice stronger.
Thanks for showing this. Many dependent on breathing assistant devises need this. I’m not on a vent, but consider myself just super lucky because I have a C4 - C6 injury and C3 is affected as well.
Yes this is a great Video because I have had problems with my Medical Equipment and it can happen to me at any time and you need to know what to do with it because you need it to stay alive. I have had to go to the Emergency Room too when something happens to get me working right again and it is scary when it happens.
@@TheQuadLifeYes I think that most people take doing Body Functions for granted but it is different when you are not able to do it and you need Medical Equipment to do it for you. There is more to it than people know about and Medical Equipment can break down and I can have problems with mucas clogs and Spasms and Infections and everything else.
You are right about that and something can happen at any time and any day. I need to have everything Scheduled and right now I am having some Issues with my Medical Equipment and I need it to stay alive and I have had to take an Ambulance to the Emergency room to get me up and running right again and hooked back up. And it can happen to me again at any time so I know what you mean. You need someone else with you and to Drive you so everything needs to be Scheduled for me so I have it covered because you need it done for you.
You seem like you are getting a little bit Stronger now compared to the other day and congratulation on your book. My Grandma took care of me too for a long time and you really appreciate it.
Another way to do it is eyegaze but I think that will be like using Mousegrid and it takes a lot of practice and does not always work like with all Assistive Technology i found out.
I think that it is probably better to use a hybrid of mouth stick and voice. I trained with Mousegrid but I have a hard time getting it to move and do what I need and I think that your Voice gets weaker and it does not recognize it. I can do it but it just takes a long time and you need to keep trying until you get it to work. I had some problems with my teeth too and a couple of them got loose so I know what you mean about that.
@@TheQuadLife Yes I think that it would not take so long if you had a stronger voice it can recognize better but for me I need to keep trying until I can get it to start working for me and you get frustrated trying and not able to do it.
I like what you do to eat popcorn independently and having someone else help you with the cookie but you are still doing it yourself. At our Support Group Meetings there are more Quads there so we had one person Feeding multiple people so they would Feed you and while you are trying to digest it they Feed someone else and then come back to you again of let you get a Drink that they hold up for you. It works but it takes time and you need to wait to get Fed but it is not bad because you are not the only one that they are Feeding there and everyone else is happening it done too.
@@TheQuadLife You are right about that and that is a good idea to start earlier. For us it takes even longer because there are more people there and you are right about not wanting the rest to wait for it to get done.
I can tell with your Pacemaker it is the same way too and you need to talk between Breaths and you try to take in more air to make your Voice Stronger but you are doing a good job.I think that it helps just to take breaks from it more because it tires you out trying to talk too long.
Yes you cannot talk too long and you need to talk in between the Vent taking Breaths so it works better not to talk too much unless you need to do it.The only way to make your Voice Stronger is to use a Microphone to Amplify it more but it still gets weaker and more Hoarse because of the Trach Tube and air pushing in all the time when the Vent is taking breaths for you all the time.
@@TheQuadLife Yes but you are doing a good job. I can tell that you are stopping to take a Breath but it is not that long and you just need to keep it shorter to fit in between Breaths and you are good at doing that and you are right about that it helps to take breaks and not go too long because it is different being on Breathing Support and it affects it and what you can do and for how long.
@@TheQuadLife Yes you are right about that and being on a Vent you can have a speaking valve but you are always connected to the Vent and there is a lot of Care that goes with it and all the Medical Equipment you have doing Body Functions because it can malfunction and clog up with mucus at any time and you need something done to fix it.
Yay! The animals are absolutely the best of that fair. You should've stayed longer and showed us more of them. Are there goats at the fair? I love goats, they are super super cute!!! 😍😍😍
Religion and state should remain separate. That booth (2:02) made a bunch of people unnecessarily uncomfortable when a state fair is meant to relax and have fun. Any preacher should know that.
Jesus said in Matthew 28:18-20 to go and preach the gospel to all nations, not only where someone is comfortable. The Gospel Outreach/Ark Encounter booth has been at the fair for over 20 years and this was my eighth year volunteering. The vast majority of people are thankful we are there and happily talk with anyone. We do have a couple visits from every year from atheists or those that oppose Christianity. However, they are treated respectfully as well with answers given to objections. There are likely around 100 different booths in this one building offering everything you do, or don't, want. Like most people, I just roll on and don't interact with something I'm not interested in. Any group has the ability to rent space at the fair. They rightly don't discriminate and charge the same rental fees for anyone.
@@TheQuadLife I was also surprised to see in the brochure of my local fair: mass and the time. I guess I may have been incorrect thinking many would not welcome state and religion mixing. However, I think it should remain separate only because of mixed feelings and people won’t suddenly become tense when they’re somewhere where they normally would be relaxed. By the way, you say many were thankful...thankful or polite?
@@morgancalvi6675 As I said, thankful. This year, just like all the previous years, multiple people come to me or the other volunteers and heartily say thank you for our work and being present at the fair. We have also had multiple people thank us for the prayer and resource support we provide as they may work in a difficult situation.
Just search and rescue stuff here....but you say you have to keep warm and is one reason why the jeans. Jeans are cotton and when they get wet, they stay wet and you will be COLD. Fleece or wool is what you want if you want to be warm and dry.
It is just weird having people ask me questions on how I do my Body Functions and what kind of Medical Equipment I have to do it for me because there is a lot more to it than they think.
They were here yesterday and asked me the same questions and I think that they have to do it for everyone but it makes it seem like you are not able to do anything. They want to know how long it takes to get me dressed and ready but it depends on a lot of things and I have Medical Equipment and a Catheter that needs to be taken care of too. You would think that they would use the information they got last because nothing has changed for me. They need to know what Adaptive Equipment you have and what you can do but it depends on how it is positioned and if you have the right Equipment to do it. I am kind of used to it but it is still awkward. If they have your Medical Records they know that you have Breathing Issues and I have a Catheter and that it needs to be working and worked on all the time.
I'm a high level quad and definitely use a cordless, lightweight vacuum...we do vacuum. Who wants a filthy house with possible allergens floating around.
@@TheQuadLife right...every injury is different. There are 2 nerves coming off each vertebrate...sensation and mobility. I'm very fortunate my injury is more sensation.
I had a 50 gallon tank and put all feeder fish in there. It's amazing how big they end up getting and they last A LONG time...months and months. You do need to make sure all the fish in one tank co mingle nicely...and some aren't too aggressive to others. As far as cleaning the tank...my fiance was really bad about it so we just got several algae eaters. Of course it didn't take the place of cleaning...but it made it a lot cleaner in the interim.Oh my...Medicaid has a requirement to take your home if you use their services and are over 55 and deceased. Let's say you want the house to stay in the family...it won't. It's called 'Real Estate Recovery' and all 50 states use this...state programs also fall under this umbrella.
They were here yesterday to do my Review again and they did want me to know that they can use your Home to pay for what they spent on my Care and Medical Equipment Supplies and everything else. I think that they have to let everyone know that now and I already kind of knew that anyway.
So you are right about all fifty states are doing it. It is not good but you need the Care and Medical Equipment and Supplies to stay alive and they know that.
@@pagzplay as far as I'm concerned...'needing' is an excuse not to try other avenues. If you can, I'd get out there and work and get off BS state aid. You make it sound as if they are he only way you can live...NOT TRUE! The barefoot preacher (Joel???) is a C1 complete quad and he works!!!
@@morgancalvi6675 C2/3 to be precise, but I do rely on government assistance. I work as much as I am able and allowed without losing benefits. I have worked regular 40-hour weeks in an office, but that was right after college. Now, my body is unable to tolerate that much. Every person's physical limitations are different and they change with age.
That sounds like a great setup. The problem I've had for the last few years is that my silver fish (Giant Danios) haven't got along with anything and tank mates don't survive long. I have gone through probably a dozen algae eaters from different suppliers and different species, but they last a few weeks or just a couple months.
A spinal cord injured friend of mine doesnt wear shoes at all when its warm, despite being told to when she was in rehab to "protect your feet". She says it doesnt matter since she wont be using them again and shoes are for walking, which she cannot do.
I've been totally barefoot for over four years and primarily for at least ten. Footwear causes more problems than anything and are really only needed in extreme cold weather. For people who walk, barefoot is also best, especially for kids. Traditional footwear restricts natural movement and leads to deformed feet and problems with knees, ankles, back and more. This is a few years old, but I explain more in this video: ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-NIJ0qYe5KcY.htmlsi=UIfgJMVaM1euzGGf
@@TheQuadLife Thank you. While Im not often barefoot I wear sport sandals whenever its warm enough and have for 30 years despite a big toe amputation when I was 16 .For me, regular shoes just arent comfortable. My feet (at least the right one) look better than most people my age who always wear regular shoes and I have no issues other than those caused by my amputation.
Super impressive. I am more of a sim racing guy, but I struggle with the truck simulators even with a full racing rig. I think I just dont have the patience for it haha. Awesome vid mate!
Can you please check something? When you're watching, move your mouse to the bottom right corner of the screen (near the full screen button). You'll see a gear that says settings, click on it. A box will appear with the bottom item saying quality. Click on it and make sure it says 720p, should be the top option. If that doesn't help or make sense, let me know.
Thanks for letting me know. It's okay on my screen, but not everyone is the same. Unfortunately, my computer's web cam can't record in HD. If it continues, please let me know.
That is an option as well as a mouse called the quad joy. For now, I'm trying the easiest solution possible. I hope to keep mainly using the stick if I can.
Just found your channel! Your sense of humor reminds me of my uncle. He was a quad too and lived for almost 60 years after his injury due to his positive attitude, excellent caregivers, and by the grace of God. I praise God that you have some caregiver support from your church and will be praying the antibiotics help clear up the trach issue.
@TheQuadLife - Fortunately he wasn’t vent-dependent, so I guess his injury wasn’t above C4. He had no movement in his right arm, but could swing his left arm enough to be able to drive the stick of his motorized wheelchair and even eat with a special designed fork and plate guard. Later on some nurse mistakenly gave him an anesthetic during a procedure (which was totally unneeded since he was paralyzed) and after that he lost feeling in his left arm too. I also remember he couldn’t really couch and so frequently had to be ‘suctioned’ to get the congestion out. He had pneumonia at one point but overcame that. As I’ve gotten older I’ve come to appreciate how incredibly strong he was, and I’m thankful he fought the good fight as my brother and I got to have so many fond memories spending time with him.
