New here with CES

Hi MB. Welcome. I’m T10 incomplete paraplegic, and I can’t move my leg at all. I only have one leg, and the other was amputated in my accident. So, I can’t speak from experience on your recovery question regarding use of a wheelchair versus use of a chair. But, speaking just as a human being. I’d say that your family are engaging in a lot of wishful thinking and that they have only been seeing you at your best. “Friends/family seem to think that I shouldn’t use [the wheelchair] as I may become reliant upon it...”. This brings back to me terrible experiences from my own recovery journey. The head physical therapist at a nursing home (who was not personally in charge of giving me any therapy) told me -in a critical and condescending tone - that I should “do all I could for myself” rather than depending on others to take care of me. I was so shocked that I didn’ ask her to give examples, but, at that time and in that nursing home, I wasn’t even authorized to get from bed to wheelchair by myself, without the help of an aide, under threat of being put out of that nursing home. Also, the diapers were stored on a cabinet across the room from me, so an aide had to come change me. (Sometimes there weren’t even any diapers left, and an aide had to go find some.) I had to be “turned” by an aide at night, due to my broken back and a huge padded boot that had to be uncovered and turn when my body was turned. So, I wondered, “What was that therapist talking about?...”Do all you can for yourself...”. Other people are often 1. simply oblivious to our condition, and 2. not willing to listen, even if we are trying to explain it to them.

I am now living back in my own home, cooking for myself, getting in and out of bed (to my wheelchair) by myself, and even going through a long stretch without an aide. There was no “slacking” on my part during my recovery, but there WERE people who made assumptions and gave opinions that were based only on their own imagination. I even wonder if that bossy physical therapist realized that I was paralyzed, as opposed to simply missing a leg.

It’s terrible that you now have this injury, but wonderful that you can stand up to get on and off of a toilet, etc., which is something I can’t do. I’m sorry for your loss.

welcome mb, and I don't know a lot about CES, but I do know many of the issues you speak of, like drs and nurses and friends and family that try and give u tips when they have no or very little idea what we are experiencing.

Here is my longer reply, firstly, ask your doctor to refer you to the nearest spinal injuries unit. The specialist staff at the unit will assess your needs and evaluate whether you will benefit from a stay in the unit or possibly as an outpatient.

They can check that you are emptying properly from your bladder and also ensure that you are able to evacuate your bowels voluntarily. Having numbness on your rectum is typical for CES but it can also signify some nerve damage that may make it difficult to poop.

Your progress will be dependent on the extent of nerve damage and how soon you recieved surgery after the initial injury. You will probably make more progress as your nerves begin to regenerate but again this depends on several factors.

My advice is to spend time on your feet, with support and some time in your chair and listen to your body. If you are tired-rest and use your chair and on the other hand you need to maintain strength in your legs too. You need to be advised by a physio who is a neuro physio so this is something you need to discuss with your doctor if you do not go to a spinal unit.

Take a good read on the CES section of the forum too as this is very informative.

Anything you want to ask me, please don't hesitate to ask, im happy to help or answer anything at all.

mb ,CES is a spinal cord injury so the most specialised medical staff to advise and support you for your condition is at a Spinal Injuries Unit. Your doctor will be able to tell you where your nearest one is and can refer you, the consultants at the unit will then decide what is the best way forward for you depending on your individual issues.

I spent 3 months in my unit but some people spend much less and also much longer, it depends on what they feel they can help you with. I developed 3 deep vein thrombosis post surgery so I had to wait some time before starting physio at the unit ( it is real hard work!). I had daily physiotherapy which was pretty intense, wheelchair skills several sessions a week, aqua therapy, occupational therapy. In addition they taught me how to self catheterize and sort out a bowel program...In all, they are great places that help you to be the most independent that you can be.

You also become a permanent patient, I go for regular appointments, next one isnt till June but sometimes i am back there frequently.