Category: SCI Tips / Thoughts

So as some of you may know back in October last year I broke my Knee whilst performing a sit to stand exercise in Physiotherapy. It literally cracked as I stood up . Whilst it was a massive inconvenience for the following 3 months, (Having a full leg cast on for nearly seven weeks and being a wheelchair meant my turning circle was massive. Going out became really awkward so I essentially stayed at home unless it was essential to leave the house).

My big questions was why it happened. I had only been a full time wheelchair user for 11 months when it broke and whilst weight bearing is really important for bones to stay strong my knee should not have gotten so weak so quickly.

My doctor refereed for a bone scan and this was just like having an x ray but they scanned my pelvis and chest and I thought that was a waste of time after all it was my knee that broke and they didn’t scan that. I thought it would show my chest and pelvis were fine.

I was wrong, it showed that I have osteopenia which is like a mid point between healthy bones and osteoporosis. I have been put on Calcium and Vitamin D supplements and prescription medication to help absorb Calcium from my blood and put it into my bones. This treatment will hopefully stabilise my bone density and possibly improve it.

I do not know when it started to develop but being in a wheelchair and not being able to do any weight bearing certainly does not help. Also I didn’t realise how important sunlight is to helping to keep bones strong. Being in a wheelchair means that I tend to have to plan any trips outside the house, how accessible is the surface, steepness of incline, availability of disabled toilets etc. All of which means that I have tended to spend more time in the house in the last 18 months than I would have previously done as spontaneous trips out have tended not to happen.

Now that I know how important sunlight is I make a concerted effort to spend at least a few hours every weekend outside, I am lucky that I live close to the park in my village and take my daughters down there most weekends for a couple of hours.

I also am eating more calcium rich foods, hopefully between a more calcium rich diet, more sunlight, vitamins and medication my ostepenia will stabilise and possibly get better.

So to start with your first transfer will probably be in a hospital using a “banana board”. This board looks a bit like a bent banana or very large boomerang and the idea is that you put it on the surface you’re transferring onto and the surface that you are currently sitting on and the use the board to help slide you from A to B. To start with you are likely to rely a lot on your arms and essentially you are lifting your own weight by using yours arms and sliding your bum.

As you get better at transfers and assuming your balance becomes okay (mine was awful to start with as I spent the first 12 weeks post injury bed bound) then you learn to use your legs to help support your weight (assuming you have some control of your legs). Once you can transfer yourself between A and B (Usually the bed and your wheelchair or maybe the wheelchair and the plinth in Physio) then you will start to feel more independent, you can do something yourself and I was really delighted when I could this.

You will get used to transfers between bed and wheelchair, toilet, plinth etc then you will try transferring into a car. This is a big deal because the gap between your wheelchair and the passenger/driver seat is much bigger than what you have been used to and depending on the car will depend whether the board will be essentially level or the incline is too steep to slide up.

You will become really knowledgeable about the height of seats in cars, ideally you want a seat to be the same height as your wheelchair, too high and it becomes a real challenge to get into, too low and it becomes a real challenge to get out of.

To start with, you realise that sofas that are really soft and low are really difficult to get out of, you may put a lot of exertion into getting out and this may have unfortunate consequences, Don’t beat yourself up if this happens as it is an understandable reaction and once you have your bowel management programme working correctly then such accidents are much less likely to happen.

After lots of practice then you start to transfer without a board, first of all between wheelchair and toilet, sofa etc before eventually managing to do this between your wheelchair and the car. If the car seat is higher then you will have to use your legs to plant your weight down through your legs and try to use your quads to push up so you are not just using your arms.

When you have a hospital appointment and will need to transfer onto a bed / plinth it is always worth asking beforehand what the height is. I recently attended a bone density scan appointment and was told before attending that it was wheelchair accessible and there was indeed a platform lift to get me into the trailer however the plinth to transfer onto was about a foot higher than my wheelchair, it was very difficult to get onto. The only way I could do it (and it took a couple of attempts and thinking about how I was going to do it) was to have the wheelchair next to the plinth, rotate myself 90 degrees so my back was against the plinth then put my hands back behind me onto the plinth and lift myself up purely by the strength of my arms taking all my weight, this would not have been an option for those without good core strength and good upper body strength.

Going back 12 months there is no way that I would have been able to get onto that plinth or indeed get into my car but time has made it easier and hopefully will do so for you too.

It was almost 12 months before we went away for a break. We booked an adapted room with Premier Inn (chessington) and it was really good, enough room to wheel around, easy to transfer onto the shower seat. All was good. Then in December we stayed at an adapted room in a travel lodge in Ashford (close to eurotunnel) and it was not very accessible, no roll in shower, it had a bath. I should have been really specific when asking for an adapted room. Next time I will ask a lot more questions when booking a room to ensure that it suitable.

You need to be a lot more prepared and plan a lot more, where are you going to stop? Does it have disabled toilets ? Is your room fully accessible? Roll in shower, enough room to park your wheelchair next to the toilet? Is it a sensible height? Disabled parking close to the hotel? Height of the bed so you can transfer across easily

 

 

 

 

 

 

If you have good hand function but poor leg function you will need to use hand controls to drive. This will take a bit of getting used to, the first time I drove with hand controls my wife needed a bottle of wine. You will get the hang of it, driving at speed on a normal road, duel carriageway or motorway is the easy bit. Junctions and roundabouts and parking are the tricky bits, to start with you may find the controls a bit sensitive and do a good impression of a kangaroo.

Perseverance and practice is key to driving with hand controls,

There are a number of things you will learn that you never really thought about before. For instance if you have to do a catheter you will have to look at the colour and if it looks like scrumpy cider then you have not been drinking enough , looks like a fine chardonnay then that’s good and if it is almost clear then that is great. Equally when you have a bowel movement you get used to having to tell the nurse the volume (good result, okay result, poor result, no result) and a number between 1 and 6 to indicate consistency (1 is rock like, 6 is liquid) even when you are discharged and home you still check and think to yourself volume and consistency (although you don’t have to tell anyone)

 

One of the things that will not realise to start with is that anything that gets damaged below the level of your injury may take longer to heal than normal, this is because your circulatory system is not working correctly. For instance if you stub your toe (you may not even feel it) and get a blister then it can take months to heal.

You must ensure you try to take good care of your skin, keeping an eye out for pressure sores as these are potentially really serious.

Below are a list of tips that have been really useful for me. They will not all be useful for you as everyone is different

1. Door widths matter

We have had the door frames removed or altered on a number of doors to make it easier to get in and out

2. Sometimes you have to go backwards

There are occasions where it is easier to go backwards in your wheelchair than forwards, particularly if there is a tight corner you need to get round and there is also a path straight on. This is the case in my house and I always have to go to the kitchen backwards.

3. Wheelchair skills

Get yourself on a wheelchair skills course with The Back-Up Trust. It is really useful and helps you get up and down kerbs and over different surfaces and inclines.

4. Access to work scheme

If you are in employment then your employer must make reasonable adjustments but sometimes you need more significant adjustments. The access to work scheme helps cover some of the cost so your employer has to pay some of it and they pay the rest

5. Smart homes are useful

Being able to control lights etc without needing to get up and flick a switch can be really useful at 3am when you’re doing a catheter

When you first get diagnosed / realise you have an SCI then it is a lot like grief, you are sad and angry that life is now different. That you may have lost the ability to walk / move and even talk. You are now disabled and that takes getting used too. If you can walk, you are likely to feel guilty that you walk and others cannot. If you cannot walk you have a steep learning curve, how to get around in a wheelchair, how surfaces make such a difference and how some inclines that you used to walk up without even thinking about it are now not currently possible for you or are ridiculously difficult.

Regardless of where your injury is the one thing that is almost universal is you are likely to have to have a bowel management system and bladder management system.

For me this was the biggest challenge in coming to terms with my SCI. Your routine will likely take an hour or so every day either in the morning or for some people in the evening.

One of the first things you learn about SCIs is that everyone is different, depending on where the level of injury is on your spine will affect what potential level of paralysis you may have. The higher up your spine the more of your body may be affected. There is one additional different categorisation that affects your SCI that is whether it is complete or incomplete. This will affect what your prognosis is likely to be, essentially complete means the chance of your paralysis improving is very slim but if you’re incomplete there is a chance that you may improve. Everyone is different and just someone else has the same level of injury eg T10 Incomplete doesn’t mean that you will both end up with the same level of function. Don’t think that if your body is not allowing you to do the same as someone else that it is your fault.