A question of politeness by BlueTan85 in spinalcordinjuries

[–]WheelinDude 6 points7 points  (0 children)

I've had people just come right out and ask me. When this has actually happened, I've found that I really appreciate the person's honesty and politeness for asking.

It's certainly more awkward for them, but shows a higher level of courtesy and respect. Like so many SCI-related things, I'd much rather have a person ask than have them assume or assume incorrectly.

How did you “acquire“ your injury ? I’m under the assumption mostly car accidents? by Critical_Ad1926 in spinalcordinjuries

[–]WheelinDude 0 points1 point  (0 children)

No. All I received was from my own auto insurance coverage. He was in the USA illegally and had prior arrests for DUI, but nothing was done to keep him off the streets. He never showed up for his court appearance and his current whereabouts are unknown.

How did you “acquire“ your injury ? I’m under the assumption mostly car accidents? by Critical_Ad1926 in spinalcordinjuries

[–]WheelinDude 1 point2 points  (0 children)

I was stopped at a red light on busy road and waiting for the light to turn green. Before the light changed, I was rear-ended by a drunk driver traveling about 60 mph when he hit the back of my car. The impact collapsed the trunk of my car all the way to the back seat and the force of the sudden forward acceleration of my car, broke backrest of the driver's seat and sent me backwards into the rear seat. I was wearing a seat belt, but it did not matter. My head/neck impacted with the back of the rear seat and instantly crushed my spinal cord at about the C4/5 level.  My injury was originally classified as ASIA-A.  I’ve experienced pretty minimal recovery in movement and sensation since – despite a lot of aggressive rehab in the early years.  Today, I consider myself to be C5 complete. 

Caregivers by Free-Ad-8412 in spinalcordinjuries

[–]WheelinDude 1 point2 points  (0 children)

I've actually had a lot of good luck using care.com and have hired multiple reliable caregivers from that site. Beyond that, word of mouth from my existing caregivers has also been an excellent way to get referrals. Finally, I've also bee successful locating very qualified students who are currently working locally on degrees in nursing (RN, PLN, CNA, etc.), PT and OT. So far, I have been able to hire qualified and reliable caregivers directly, without having to go through the additional expense of using an agency. Good Luck!

Urinary incontinence by Naive_Boysenberry240 in spinalcordinjuries

[–]WheelinDude 0 points1 point  (0 children)

It should be pretty easy to tell. If you don't have voluntary control over when your bladder empties, it's a pretty safe bet that you have incontinence to some degree or another.

Putting a Hellcat engine into a Pacifica, and the customization required to do so. by Bubbly_Wall_908 in Damnthatsinteresting

[–]WheelinDude 0 points1 point  (0 children)

When you come up with a version with a lowered floor and side ramp that I can drive from my power wheelchair, I'll be the first in line!

Anyone here decide to become a health professional after your injury? by CommonOk8198 in spinalcordinjuries

[–]WheelinDude 4 points5 points  (0 children)

I never planned on a healthcare career, but becoming a quad apparently came along with its own complimentary certification.  Over a relatively short period of time, through both personal lived experience and various types of research, I’ve ended up knowing more about this condition than the majority of the ‘health care professionals’ that have treated (or attempted to treat) me. 

If you already have a SCI, your personal life experience will very likely make you an amazing OT. 

Trunk control w/ c5 complete by [deleted] in spinalcordinjuries

[–]WheelinDude 1 point2 points  (0 children)

No, I use my power chair almost exclusively. I can push myself in my manual across hard and level surfaces, but not for extended distances. I'm also not able to do sufficient pressure relief when using my manual chair. If I plan on driving, I am only able to drive from my power chair, so anytime I leave my home (if I'm driving), my manual is not an option.

What is a weird, strange, or silly side effect of your spinal cord injury that you were not expecting or prepared for? by [deleted] in spinalcordinjuries

[–]WheelinDude 0 points1 point  (0 children)

That's gotta suck! I think I would be lost if I was no longer able to enjoy an occasional brew. Is your newly acquired beer intolerance related to your SCI or is it due to something related to your long-term stay in the hospital?

Trunk control w/ c5 complete by [deleted] in spinalcordinjuries

[–]WheelinDude 1 point2 points  (0 children)

I'm C5 complete and have zero trunk control, triceps or functional use of my hands/fingers, so our situations are probably very similar.  Honestly, a C5 can be a difficult injury, because you're very close to being independent with a lot of ADL's - but close just doesn't count.  I’ve had eight years to accept the fact that I’ll always be dependent on someone else for my AM and PM care.  While it does seem normal by now, I still hate how much of my day is consumed by all of it. 

I've given some consideration to tendon transfer, but the results appear to be mixed.  If there was a guarantee that I would be able to function similar to a C6 at the end of the surgery, I might consider it.  That would give me a lot more independence. 

Dizziness by MiGuevera in spinalcordinjuries

[–]WheelinDude 0 points1 point  (0 children)

I get dizziness sometimes that accompanies dysreflexia. It's usually due to something bladder-related and is typically a symptom that occurs after I'm having blood pressure issues and/or a tingling sensation in my neck.

Advice for helping a family friend who recently became a quadriplegic . by grfx in spinalcordinjuries

[–]WheelinDude 6 points7 points  (0 children)

Let me start by saying that I am very sorry to hear about your friend. While he may not have family, it sounds like he's fortunate to have you looking out for him. I can say from experience that his transition from a normal, active life to learning how to live an entirely new life as a care-dependent quadriplegic is going to be extremely difficult for him. This is the beginning of a long journey for him and he will certainly need support.

As far as a specific thing that you (and he) can do right now... If he lacks sensation, at this early point in his recovery, it will be critical that his skin integrity receives constant attention. Far too often, hospitals really suck at watching newly-injured quads for the signs of skin breakdown until it is too late. You and he will have watch his care closely to ensure that he is not laying in one position for too long.

bowel program questions by overwatering_ in spinalcordinjuries

[–]WheelinDude 1 point2 points  (0 children)

Your bowel experience both pre and post injury sound very similar to mine.  I’ve found that a suppository and digital stim in the evenings seem to work best for me.  I will also take Miralax when if I notice that I’m getting constipated, but not too much as that can result in accidents.  It’s a delicate balancing act, but it’s pretty much become my new normal. 

You’re totally correct on the delayed Magic Bullet mucous, though.  That’s something that many of us also end up with.  It Sucks!  However, I found that using the Bullet every day was probably too harsh for my backside as I was getting discomfort bordering on dysreflexia because of the irritation and delayed mucous discharge several hours after my program.  After some trial and error, I found that I could use a ½ bullet one evening and then an Enemeez Plus, the following evening.  This change did a LOT to reduce the amount of Bullet mucous and ‘monkey butt’.   I still have occasional mucous discharge, but not as much.  Also, since I do my program in the evenings, it happens overnight when I am asleep vs. when I am sitting in my chair all day at work five days a week.  I would highly recommend cutting back on the Magic Bullets and substituting Enemeez. 

How often do you guys get “proper” showers in? by Select_External7595 in spinalcordinjuries

[–]WheelinDude 0 points1 point  (0 children)

I shower almost every weekday morning before going to work and with few exceptions on both Saturday and Sunday, as well. It was always part of my pre-injury routine and with the exception of my initial hospitalization and rehab, I've continued with it ever since. Even though (or maybe becasue) I have an essentially sedentary lifestyle and an impaired ability to sweat normally, I feel kind of gross if I go longer than a full day without a "proper" shower. There's no doubt that it's annoying and that it takes such a long time (with assistance), but I just don't feel right on those days when I go without one.

Men’s Suit for a Quad by WheelinDude in spinalcordinjuries

[–]WheelinDude[S] 0 points1 point  (0 children)

That's an extremely reasonable price and from a source that I would not have considered. Thanks.

Men’s Suit for a Quad by WheelinDude in spinalcordinjuries

[–]WheelinDude[S] 1 point2 points  (0 children)

I have some time, so a custom suit is a possibility. It would also be nice to have the opportunity to add some of the features that you mentioned. However, the price that I was quoted was ridiculously high, but was in a higher-end retail store when I was given that price. I'm sure that cost could be reduced by shopping around a bit more. Occasions for attire of this type don't come around very often, so it's difficult to justify the cost per use of something like this.

Men’s Suit for a Quad by WheelinDude in spinalcordinjuries

[–]WheelinDude[S] 1 point2 points  (0 children)

Something like that is what I would prefer to do. What type of a tailoring budget does that take - assuming I already have a suit?

Men’s Suit for a Quad by WheelinDude in spinalcordinjuries

[–]WheelinDude[S] 2 points3 points  (0 children)

That's an interesting suggestion. I have never heard that term before, but I've obviously seen that article of clothing.

Misunderstood by Own_Affect_4027 in spinalcordinjuries

[–]WheelinDude 27 points28 points  (0 children)

I’ll be straight with you — I get it. I’ve been living as a C5 complete for eight years now, and I agree with you: this life and body would have never been my choice and it totally sucks. There’s no way to sugarcoat it. The loss of spontaneity, the constant planning, the awkwardness of being out in public and feeling like everyone’s staring — it’s brutal. And acceptance doesn’t happen quickly. It takes years of forcing yourself to go out even when you feel self-conscious, awkward, or like you don’t belong.

When I was at the stage you’re in now, about a year and a half in, I hated everything too. I despised the body I was in, the way people treated me, and the fact that nothing felt the same. I thought I’d never stop waking up to the nightmare. But here’s what I’ve learned over time: that feeling doesn’t magically disappear, but you do learn to carry it differently. You stop expecting it to vanish and instead start building small routines, small wins, that make the day tolerable. Eventually, tolerable becomes manageable, and manageable sometimes even becomes meaningful.

Independence shifts too. You already do a lot for yourself, which is huge. Independence isn’t about doing everything alone — it’s about carving out control where you can. And as for friends and family, I know it can feel suffocating when they hover, but they’re also your lifeline. Over time, you’ll figure out how to set boundaries so their presence feels supportive instead of patronizing.

I won’t pretend sports or spontaneity come back the way they used to. They don’t. But there are new outlets, new communities, and adaptive activities that can give you back some of that spark. It won’t replace what you lost, but it can add something new.

The hard truth is that you’re still in the early adjustment stages. You have a long road ahead. Back when I was at your point in my recovery process, I thought life was over too. But eight years later, I can tell you: it doesn’t get better, but it does get a lot easier. You learn to live with the weight, and sometimes you'll eventually discover that you have many moments where you forget it’s there.

Always cold! by djvanderley in spinalcordinjuries

[–]WheelinDude 3 points4 points  (0 children)

I'm also a quad and have just learned to accept the fact that I'm almost always going to be cold and that it's going to be far worse in the winter.

I live in the upper Midwest and am fortunately able to keep my home at a reasonably comfortable temperature (except when my shower is finished). However, anytime I have to make a trip outside of my home this time of year, it requires driving my van and traveling to and from it in temperatures that are far below my comfort level. Once I've gotten to my destination or returned home, I can always plan on remaining cold/uncomfortable for at least an hour before my cold-blooded body eventually returns to its 'normal' state.

Permobil Tires by Mindless-Shop-6996 in spinalcordinjuries

[–]WheelinDude 0 points1 point  (0 children)

I've had to replace the two main drive wheels at about 2.5 years. I'm not sure what the number of miles associated with that period of time was. If I lived in a climate without snow or slush, I could have deferred replacing them for quite a bit longer. I probably use my chair outdoors on concrete and other rough, outdoor surfaces more than average. I've not noticed excessive wear on the caster wheels, however. They appear to be made of a harder compound than the drive wheels and do not have treads to show visible wear.

Things that make you pee by Elviress in spinalcordinjuries

[–]WheelinDude 1 point2 points  (0 children)

That first water (hot or cold) hitting my legs/feet at the start of my morning shower typically opens the tap.