9 replies to this topic

[Bob Clark]

Hi Tess,

Sometimes having a bladder or kidney infection will make you sweat. You may have a low-level infection and not really know it.

1- After being on antibiotics for awhile, when you and perhaps your doctor know for sure that you're infection free, do you still sweat?

It's also possible that your sweating is caused by autonomic dysreflexia. You'll need to ask your doctor about it. Hopefully you have a doctor who knows about paraplegia/quadriplegia. Some/most doctors aren't trained in this field and may be "winging" it as they try to help you. If you live near a Spinal Cord Injury Center try to get a doctor there who is educated and experienced in this field of medicine.

I was 24 when I was paralyzed (T-5) and for my age had slightly high blood pressure 140/80. After being paralyzed it lowered to the perfect 110/60. The only benefit I ever got from being paralyzed! But how accurate (or comparable to normal able-bodied people) blood pressure readings are for paralyzed people I don't know. It's possible that our veins and arteries are still restricted in some important areas but the area below our injury makes up for this so gives us a low overall reading. But that's just conjecture on my part.

It's possible that you'll always sweat more now that you're paralyzed. Since you can't sweat below your injury (at least I can't sweat below mine) your body needs to regulate its temperature with just the small area that you have left that can sweat. You need to be careful when you go outside into the the hot sun. You can get a heat stroke fairly easily because your body can't regulate its temperature by sweating. You'll want to wear light airy clothing when you think it'll help cool your body down.

Oh, another benefit from paraplegia. My sneakers don't stink anymore because my feet don't sweat. Grrrr....

Hopefully with time you'll be able to get rid of the binder. Your body may adjust to the low blood pressure and even raise it a bit. Perhaps someone else here who knows more about being a quadriplegic can comment on this.

I wish you all the best and hope that you find a solution to being sweaty and dizzy. You have enough problems without those factors inhibiting your life.

EDIT:

Oh, I just found this info here at this website. I just noticed all that information at the top of the page.. i.e. "Quadriplegia & Paraplegia" : "Vertebral Column" : etceteras.

http://www.apparelyz...emperature.html

[Apparelyzed]

Hi Tess,

You are most probably experiencing Autonomic Dysreflexia.

For more information and it's causes, follow the link below to see if you can pinpoint it's cause.

http://www.apparelyz.../autonomic.html

If you find you sweat just before your bladder empties, it could be that the reflex to release the urine from the bladder may be sluggish, this can sometimes be relieved with medication.

If you have only recently started sweating, check your skin for marks, and your toes to see if there are any ingrowing toenails.

The link above should give you some other pointers as well.

Regards

Simon.

[AHolland]

Hi Tess,

On the issue of dizzyness. I was on a binder for about a year after my accident (complete T4/T5). Initially I would pass out whenever I had it off due to low blood pressure. The nurses gradually had me sitting up on an inclinded bed and slowly my body adjusted to the greater stressed on my heart. We then went for short periods of time sitting fully upright with no binder on until I was fine to not have it on ever again.

I have since played around with an incline board where my body is stood up to my total 6'2" height at an incline of 45 degrees. I again experienced the dizzyness. but now I am up to 70 degrees without dizzyness. I guess my body is slowly adapting. I do it about once a month to just push my body and heart more.

You may want to try a similar set of trials, but I would have someone around so you don't get dizzy, pass out and hurt yourself. I am a lot like Bob Calrk (except better looking...LOL) as my blood pressure is around 100 / 70.

Okay, I have no idea what Bob looks like, but thought I would take a good hearted jab at him anyhow...ducks waiting for the return volley....

[Bob Clark]

Hey there AHolland,

I wouldn't want you to keep wondering what I look like so here's my pic.



Well, maybe it's not me but it resembles me! Really, it does!

I remember back to when the nurses in the ICU first tried to get me to sit upright. I was lying flat on a striker frame and they started to invert it. As it got to about 30 degrees or so I told them to stop. That I was gonna pass out. They looked at me as though I was just being "difficult" or a wuss so kept increasing the angle. When it hit about 45 degrees I remember telling them to stoppppp ..... and then my lights went out. When they "revived" me they apologized and we went a little slower until I was finally able to sit upright.

I later got leg braces and built a set of 8' long parallel bars for use in my apartment. I was able to "walk" and turn around but not having any abdominal muscles it made walking with crutches practically an impossibility. After a year or so I tired of the braces and parallel bars and was soon using the bars as a "valet" for my clothes and whatever else I could hang on them!

I wonder whatever happened to that monstrosity!

EDIT:

Hmmm, I don't know why the pic ain't showing up. You can always copy and paste the URL into your browser if your curiousity gets the better of you.

Admin Note: Your image now shows, I messed around with the settings, and voila !

[AHolland]

I've never tried leg braces. I presume you strap these babies on and they lock the knees so that between them and arm crutches you can try to walk? I also havbe no use of my stomach so I would be a virtual wet noodle, but the idea sounds interesting for those that have a bit of stomach control.

I'm past the dizzness issues, but it sounds like we both went through s similar training of the body to resist passing out.

[Bob Clark]

Hi AHolland,

I'm glad the the admin (Apparelyzed?) was able to get my "glamour" photo to show up. My light beard is starting to itch so I may shave the "George Michael" look. I'm soooooooooooo handsome.

You may want to try leg braces and parallel bars. I remember the first time I was able to stand after 2 or so years. It was soooo high up there. I mean really... I never realized how tall 6' 1" really was.

Or maybe try one of those stand-up contraptions.

I was able to design and build my parallel bars easily and cheaply. I think the parts cost about $150 USD in 1981 dollars.

It consisted of just two 3" round 8' long galvanized pieces of tubing for the topmost bars. Four 90* L fittings, four 3" round approx. 3' long galvanized pieces of tubing for the upright bars. And four round bottom pieces that bolted into the two 2"x10"x4' wooden cross planks. I had all the pieces cut and threaded at the hardware store that I bought them at. It's a really simple design and was rock solid. I believe this is the type of railing materials that you may find at a stadium.

If you want more specific plans I can draw you a simple blueprint using MSPaint.

The State of Florida (Vocational Rehab) paid for my custom braces. I believe they cost about $2,000 at the time. Pretty expensive. They velcroed onto my thighs and calves and had a steel lock joint at the knees. There were molded pieces of plastic of my thighs, calves and ankles and the bottom of my feet (plaster casts were made) and these would go into a pair of sneakers. I would wheel up to the parallel bars and pull myself up onto them then lock the knees into place. It was a little tricky at first but I soon learned. I've seen leg brace designs that went all the way up to the abdomen or perhaps even the chest. But the thigh high ones worked fine for me.

I don't remember what happened to them. If they're still here in my garage or backroom I could send 'em to you. How tall are you? Maybe you could take them to a prosthetics expert and have them custom adjusted. But let me look for them first... I haven't seen them in years... I don't even know if I moved them into this house when I moved here 15 years ago! I can't believe that I'd throw them out but I've done stranger things!

You won't believe how tall you feel the first time you stand up after a year or more of just sitting. I still clearly remember the sensation. I couldn't believe how easy it was for me to walk at that height before my accident. And run and jump and bolt side to side. Ahh, the good old days. And then how unsteady and clunky I felt at that height afterwards. Wayyyyy up thar!

You're right about feeling like a wet noodle because we don't have our abdominal muscles. But the parallel bars are completely stable so there's no fear. You can find your center of gravity and let go of the bars for awhile. And use a "swing gait" or "side to side gait" to walk and turn around. I don't recall ever getting dizzy but if you do it should subside with slow practice. I would NEVER try this with crutches of any type!

If your insurance company will pay for your braces it's something you may want to try. If you wait too long into your paralysis your bones and joints may get too brittle and your knee joints may no longer extend into totally straight alignment. I don't think I'd be able to stand up now after all these years. I broke my left leg so it's 2 inches shorter than my right. I guess I could always have a "lift" put on my left sneaker or shoe but my knees don't extend as straight as they used to.

And I was in MUCH better physical shape at age 26 than I am at 50. I gained at least 30 pounds and smoke wayy too much so I'd have a real hard time of it now. And I did my share of drugs and drinking lo those many intervening years and never exercised anything other than my beer hoisting elbows!

Try to stay in shape and don't get crazy and lazy like me.

[AHolland]

I know there is no way my insurance will pay for any crutches. We argued on whether I need a wheelchair for half a year. I'm missing 4 cm (2 inches) of my spine at the T4/T5 level, and they still needed 7..count them..7 different doctors/surgeons etc to say that I would need a wheelchair. Their "experts" were not convinced someone in my situation would need one. They also hesitated on the insurance payout for loss of use of limbs, because I might get the use back at a later time....

Everytime I go for anything they want a doctors signiture and a physio therapist's letter explaining why I had to have the equipment. They have yet to pay for a single item for any modification to my house due to my handicap.....Did I say that the Great West Life Insurance company is a bunch of @#@#@ @#@#@# bast#$d's. I'm starting to lose it here. Back to subject. Did we answer your questions Tess?

Standing at height seems to be a bit of fun and I get to use the standing table at my local hospital about once a week. Not sure what I am accomplishing, but they are happy to let me use it, and it does no harm. I suspect it actually does a bit of good in that it tax's the heart to lift the blood up to a higher level.

[Bob Clark]

Hi AHolland,

Insurance companies are notorious for gladly accepting your premiums then instantly penalizing you if your payment is a day late. Then screaming and bellyaching whenever they have to make a payout. I'm not suggesting they shouldn't be prudent "overseers" but there has to be a way to make these systems less painful and easier to navigate for the patient/client than what's in place now. They're experts at dragging their feet (no pun intended) whenever they're forced to make a payout. Every day that money is in their account it collects interest and makes their bottom line bigger so the shareholders are happier. Happy shareholders make for larger salaries and beefier bonuses for the corporate/company upper echelon execs. They're in business to make money, lots and lots of money... not to help people. Go figure.

The Canadian and US systems are different but it appears that neither make it easy on their patients/clients/beneficiaries. Medicare knows that I'm paralyzed for life and that I'll never walk again. In my case there isn't even an argument about that. But I still need to have special narratives written by doctors and therapists before they'll replace my 8 year old wheelchair and cushion. Or anything else. I don't even bother trying to get them to pay for anything else. Too much hassle and disappointment. I buy my own catheters so I make one last for a month or two! Everything needs to go through a bureaucratic approval process and if the narrative/prescription isn't worded exactly right then it gets refused. It's more important to have a doctor who knows how to fill out forms than it is having a one who knows how to doctor! And if a "request" is submitted at the beginning of the fiscal year there's a much better chance of it being approved than it is at the end of the year because there's more money in the system then. What a freakin' way to run a healthcare system.

I gave up in frustration trying to get a new wheelchair/cushion so will just patch this old one up. Last month I bought a handful of nuts and bolts from my local hardware store to keep the wheels from falling off. Even though they should be special "aircraft quality" nuts and bolts I'll make due with whatever the hardware store had in stock. And at an out of pocket cost of $100 USD I just had 2 new tires and tubes put on my rims. And as soon as I save up another $100 I'll have my spare set of rims redone as well. Every freakin' car in the world has a spare tire but having a spare tire for a wheelchair is considered a luxury item here in the US!

If the politicians and their families had to go through this crap things would change. But they have lots of money, their special privileges and here in the US much better healthcare policies than the average citizen. The "servants of the people" have it much better than their supposed employers... the taxpayers.

Okay. I'll stop my long-winded complaining.

I'm glad you get to stand every week using the hospital's "standing table". It's good for your overall health to get way up there where the view is better and the air is fresher!

Sorry for kinda hijacking your thread Kristin. Once I get started I find it difficult to stop!

[NickH]

Hello

There is a similar question HERE

Regards
Nick