disability health complications, tips, and advice

[fishinjunky]

i though might be good idea to start a thread where we could share the health complications we have experienced an tips or advice for dealing with these complications

I had a spinal cord injury 13 years ago very drunk skinny dipping with some very attractive ladies at the beach i dove into a wave hitting my head on a sand bar breaking my c4/c5 vertebrae.

The spinal cord injury itself has not been the most difficult. Its all the health complications that come with having a disability. These are just a few ive experienced

PRESSURE SORES:
ive been dealing with pressure sores for at least 6 years. I recently healed 2 stage 4 wounds on mu backside they both had exposed bone and were VERY BAD almost killed me. To heal the I had to lay on my side for a year NO PRESSURE and lots of protein ( i used protein powder so i can measure amounts) and clean dry dressings daily. I tried a wound vac but it irritated my skin an was a bitch to apply the dressing an get it to seal. Most important is to remove all pressure completely.
I currently have a small stage 1 sore on my tailbone an a small but very deep sore ontop my hip from wearing pants this one is being very difficult to heal.


AUTONOMIC DYRSEFLEXIA:
for me this has been the worst complication it makes me feel like im getting beat in the head with a baseball bat everytime my heart beats an i sweet buckets with chils. So many things can cause this for me its mostly when i need to cath or am constipated. I take nitro tablets under the tongue in emergency for this. Ive been dealing with this a lot lately.


HETEROTOPIC OSSIFICATION:
This is common after a spinal cord injury. Bone develops in soft tissue. I have it in my right hip limting my range of motion. Not much can be done for it

[Burgerman]

I have had the first two. Thats bad enough. 24 Years here.
And I have done the 12 months, and almost 3 years on bed thing...

[martin007]

Loss of muscle mass and strength as a result of not being able to support my own weight.

[Burgerman]

Sores are a pain. Years wasted on bed. However wait! theirs more as the advert goes.

Lets not forget the endless bladder infections...
Or the fact that I burn myself pretty much monthly one way or another! I burned a hole in my foot that almost a year on is only just healed ish, and I have another deep small one on my side where a hot M.2. removable drive burned me, or the one on my chest where a hot plate did the same! Obviously I cant feel this happening.

Or the difficulty coughing up fluid off my lungs when it happens after I eat. This sometimes happens daily for weeks and lasts 6 to 8 hours. Then it all goes away for 2 months. My latest theory is that its caused by Heliobacter.pylori.

Or ingrowing toe nails, that the horrid fungal nail desease a chiropidist gave me! That caused autonomic disreflexia. Yes the hammer inside your head that turns you white and makes you think you will die...

[fishinjunky]

Sores are a pain. Years wasted on bed. However wait! theirs more as the advert goes.

Lets not forget the endless bladder infections...
Or the fact that I burn myself pretty much monthly one way or another! I burned a hole in my foot that almost a year on is only just healed ish, and I have another deep small one on my side where a hot M.2. removable drive burned me, or the one on my chest where a hot plate did the same! Obviously I cant feel this happening.

Or the difficulty coughing up fluid off my lungs when it happens after I eat. This sometimes happens daily for weeks and lasts 6 to 8 hours. Then it all goes away for 2 months. My latest theory is that its caused by Heliobacter.pylori.

Or ingrowing toe nails, that the horrid fungal nail desease a chiropidist gave me! That caused autonomic disreflexia. Yes the hammer inside your head that turns you white and makes you think you will die...

What were your methods for healing the bed sores?

Maybe I should bring that up to my doctor about my mucus problem. Couldn't hurt to at least test for it. I've just about given up on it an am just trying to manage it.

I have to check my nails weekly for this also.

Do you guys in/out cath or indwelling or superpubic? I have indwelling

And let's not forget low blood pressure dizziness, inability to tolerate cold/heat, osteoporosis, blood clots, pain, hemroids, bowel/bladder accidents

It's not the easiest like we are living

[Toro]

C4-C5 quad here, 26 years... had the first two also, there is no way to describe to someone automatic dysreflexia that hasn't had it, the head pounding can be crazy... and the sweating, like running a marathon at sprint pace.

Pressure sores is what really steals time as BM said, the waiting game is torture in itself, talk about watching the clock tick over. Had a couple long stints of first 18 months then couple years clear then another breakdown with one side happening for a year, healed that then other side broke down compensating. Then the scare tissue is always tender and waiting to break down again once it's happened before. The thing is all my pressure sores have happened because of seating rehab screwing up with their expert knowledge. I've been good since start of year, mine are always small, key is to get off them straight away and look after them. Tilt your chair often to get that blood circulating, it really helps. I know easier said then done, but better long term.

Coughing up stuff is difficult, I get a quad cough done for help, but having to non stop cough takes it out of me to nearly passing out. Got an appointment with a physio to trial a cough assist machine. Hopefully that will help a lot.

[Burgerman]

What were your methods for healing the bed sores?

Pillows, turn, keep off them, and years of my life.

Maybe I should bring that up to my doctor about my mucus problem. Couldn't hurt to at least test for it. I've just about given up on it an am just trying to manage it.

Ditto.

I have to check my nails weekly for this also.
Do you guys in/out cath or indwelling or superpubic? I have indwelling

Convenes and spray glue to help! Worked great till they DISCONTINUED it!!!

And let's not forget low blood pressure dizziness, inability to tolerate cold/heat, osteoporosis, blood clots, pain, hemroids, bowel/bladder accidents

Quite.

It's not the easiest life we are living

Nope. Its better than the alternative. And we get to use the disabled bays!

[foghornleghorn]

Cough Assist Machine

The cough assist machine is a very unnatural feeling thing.

The hospital physio tried one on me recently in an attempt to dislodge gunk that was in my collapsed lung.

• Ventilator style nose and mouth mask.
• Machine breaths manually controlled by her - didn't seem to be capable of an automatic sequence.
• She did 3 deep breaths in, then the 'cough'.
• You are also supposed to cough yourself when the operator pushes the cough button.
• The machine then sucks instead of blowing with a weird fluctuating pressure that is intended to dislodge anything that is loose.
• Repeated several times until I'd physically had enough of it.

Total waste of time on me in that situation and she decided it wouldn't be worth a repeat session either.

May work for you, but I won't say the standard "doesn't hurt to try" as whatever she did on the first attempt did hurt in the centre of my chest.


Coughing And Gurgling After Eating / Drinking

I get this every now and then. Sometimes as a one off, other times for days or weeks until I work out what has set me off. Also seems accompanied by difficulty swallowing and needing to be very careful not to choke while eating.

Most causes for me seem to be airborne chemicals from scented or cleaning related products. As an example - leave the lid open on the kitchen washing up liquid and I rapidly start to have problems.

Only effective solution for me is 10 minutes to half an hour laying down using the ventilator I would normally only use overnight, to assist me to rapidly cough everything out. Otherwise I can spend 5 hours gradually coughing myself to death with a pathetic weaker and weaker cough and pretty much drowning.

[martin007]

What were your methods for healing the bed sores?

Convenes and spray glue to help! Worked great till they DISCONTINUED it!!!

What is this?

[Burgerman]

Guess where this goes...
Self adhesive, unrolls!

[Burgerman]

This makes them stick much better.
DISCONTINUED.

[martin007]

And is that to treat a yeast problem, circulation, or what?

[Burgerman]

Its to send urine to a leg or night bag. And the glue makes them stick much better.

[fishinjunky]

Its to send urine to a leg or night bag. And the glue makes them stick much better.

the good ole condom catheter. I have to shave bald for them to stick. Ill have to give that glue a try. Im thinking about going back to in/out cathetering instead of a indwelling catheter

[F3Head]

Yes… C4 complete quad 39 long years… Still waiting around hoping to crap out any time now. Unfortunately I have a knack for hanging around. Many sores over the years as everyone's mentioned. One key bit of advice if you get a pressure sore and it will not heal is to make sure you try the Silver Nitric Acid GRAHAM FIELD Silver swabs to chemically debride wound periodically. It freshens the wound bed so that fresh healing properties can enter the area and hasten new healing. Beware it's dangerous stuff and can burn you. But it does work on stalled wounds at least for me. I've cleared them up after much bed rest and it will work on tunnel wounds. I also use a 4 inch high profile Roho cushion on my F3. Hard to sit on but it does protects my skin. I also a have a knockoff Roho that was half the price that works just as well.


Good luck,F3HEAD

[martin007]

Its to send urine to a leg or night bag. And the glue makes them stick much better.

I understand.
I still don't have that problem.

[MenCallMeGimpy]

Unlike many (most?) here, my condition isn't due to spinal injury, I was just made wrong.

I have muscular dystrophy, which means I get weaker and weaker throughout my life. Even better, the progression of the disease is unpredictable, meaning I can see no change for a number of years, then "fall off a cliff" and weaken rapidly over a couple of months. This makes planning any kind of longer-term future very difficult.

One example: I'm thinking about having my bathroom turned into a "wetroom," to make using it easier. If I decide to build it to work for me as I am now, I know I'll have to do it again in some number of months/years/decades when I'm much weaker. If I try to guess what that weaker state will be and build for that, I will make using it today less convenient, while maybe not guessing right about what I'll actually need in future. This quandry extends to many aspects of life, from household modifications, to mobility vans, to wheelchairs, to beds, etc, etc. None of this stuff is cheap (the "cripple tax" is real), so I want to be sure to make the right decisions now; who knows if I'll be able to afford it later.

In addition, the fact I'm now virtually immobile for most of the day means that hemorrhoids (internal and external) are constant companions. The internal ones are particularly fun, given their propensity for bleeding at toilet time, making every visit to the loo an impromptu "Cancer: yes or no?" quiz.

If I don't make sure my feet are elevated at all times, sedentary edema makes my feet turn a fetching shade of purple, like the pope's slippers.

If I don't stay reclined at precisely the right angle for much of the day, my right hip decides it needs a career change into a bag of broken glass. Similarly, if I recline too long, the middle of my back joins my hip's glass-fragment business. Good times!

Naturally, because muscular dystrophy is incurable, my attempts to enlist the medical profession in helping to relieve some of these issues have been met with indifference. Doctors seem to be personally insulted by diseases they can't do anything about, so they pretend they don't exist. I usually end up spending my time explaining to one doctor or another what my condition is and how it works. Then we look at each other, shrug, and I'm on my own again. Or immediately fobbed-off on occupational or physical therapists who wouldn't know MD from a WMD.

So, barring some miracle cure, I'm looking at a future of progressive weakness, until I'm basically a helpless ragdoll who can't do the most basic things for themself. Or the world may be merciful and kill me first.