Back home to my parents was always going to be my first port of call after my hospital stay. They had, however, only just had a new extension and kitchen installed before my accident so as you can imagine there was a great deal of work to be done so that I could have a side entrance, accessible bathroom and bedroom installed. The work required was made possible by a Disabled Facilities Grant (DFG) and arranged by our Local Authority.
I was appointed an Occupational Therapist (OT) from leaving Lascelles (which was my local rehab unit) for 12 months. After that, if I required any equipment, we would put a case forward to my local Clinical Commissioning Group (CCG) and the on-duty OT would evaluate this based on my need.
I needed 24/7 care with two staff present at all times due to my tracheostomy, vent at the time and moving and handling. Having this level of care at home came with the loss of privacy for other family members. I have two younger brothers, and by moving home, with everything that came with that move, I am very conscious of the impact it had on them as well as my parents. My old bedroom became the carers bedroom for when they were on the sleep-in shift, so family members had to be very conscious of others around them and could not come out of their bedroom without being fully clothed for four and a half years. Any private conversations, family mealtimes, just general downtime really, became a thing of the past as the house suddenly became a very full house. We all dealt with it though and adapted to the changes. I found it of huge comfort to be able to go home, and my parents wouldn’t have had it any other way.
I have lived in my own home since 2013 and now have my family round at mine every day! My family are a massive part of my life, and I love having them around.
So what equipment do I need?
It goes without saying that the two most essential pieces of equipment I came home from hospital with were my ventilators (a wet and dry one) and a suction machine. I always have two of each of these machines in case one fails or needs charging.
Cough assist machine
Initially, it was felt that a cough assist machine would not be beneficial to me. But after being hospitalised with various chest conditions (pneumonia/chest infections) on a number of occasions and the fact that I was still frequently on my ventilator, it was decided that I would be reintroduced to a cough assist machine. I have to say that I have been much healthier since using it. A cough assist machine forces air into your lungs slowly, and after a short pause, the machine quickly pulls the air out, along with (and sorry for any people who don’t like this!) but any mucus which is in your lungs. My carers will use my suction machine to clear it.
Su, my Occupational Therapist from Sheffield Hospital, had started using a Tens machine to try and work on the little flickers of movement that I had in my fingers, so my family purchased one for me to continue using after I was discharged. Tens machines are commonly used for people who are in labour or who have back pain, but for me, the hope was that by placing the sticky pads on the relevant muscles/nerves on my arms they would react. After using it regularly over the next few years without much change, I stopped using it.
Beds and Mattresses
A profile bed and air mattress are ideal for those who require regular pressure relief as I do. I have a Nimbus 3 Airflow mattress and a Profile bed.
Profiling beds are electric beds that can be adjusted to meet patient and carers needs. For example, my head can be raised to allow me to sit up to eat or watch television, or my knees can be raised for greater comfort when lying down. Being able to move the bed in this way can help relieve pressure. Profiling beds also make work easier for the member of staff delivering the care. Most profiling beds offer a height adjustment, so they don’t have to stoop over to provide care. It is also easier to hoist with a profile bed.
The mattresses have different compartments which are filled with air. The pressure in the mattress then alternates so that it prevents you from developing a pressure sore if you are laid in bed for long periods. I try my utmost best to have regular pressure relief as if I do develop a pressure sore, it can mean having to spend longer in bed while staying off that particular affected area while it heals.
When I was first discharged from the spinal unit, I used one of their manual wheelchairs until my own electric wheelchair arrived. I have recently privately purchased a new Permobile wheelchair from Innovacare as the one I was issued with from the NHS was extremely bulky and didn’t support me very well. This was my personal choice to do so, I just see it as an investment in my health and also with my new chin control, an investment in my independence.
I had seen people controlling their chairs using a chin control while still in the spinal unit and always hoped one day I would be able to use one. People are watching their toes at the moment, and my speed is slowly being increased, but I love the fact that I have so much more independence and freedom now.
Lifestand (Standing Chair)
It was suggested that a standing wheelchair would be beneficial for my blood pressure, kidney and bladder function and circulation. While standing up for only the third time of using it, we heard a crack, and I had broken my leg in 2 places! It wasn’t the fault of the equipment; after a bone density scan, I was diagnosed with Osteoporosis and sadly was unable ever to stand up again.
I have an easy chair which I use when I am at home. It reclines, and I can put my feet up. It’s very similar to an armchair and is very comfortable.
Some people have a manual hoist, and some have a ceiling hoist. I am guessing that your level of injury may determine which one you choose. I chose to have a ceiling hoist in my bedroom, and it makes for an easy transfer from my bed to my wheelchair, shower chair etc. I also find that the use of a hoist helps get you positioned correctly, which is really important.
Having access to the internet gives me access to the outside world. When I was in the hospital and away from my family and friends for so long, having contact with them was and continues to be, so important to me. It is a lifeline. I also had to find an alternative way of being able to continue with my guilty pleasure of shopping… being paralysed wasn’t going to stop me! I really pushed myself to get to grips with the IT equipment on offer, and although it took a while, I persevered and got there in the end.
I use an Integra mouse to control my computer and was introduced to the device by a guy called Richard, who came into Sheffield Hospital to help patients with IT equipment in the OT department. I will always be really grateful for his help and support.
I operate my Integra mouse by using my mouth to move the cursor around the screen. The only way to describe how I operate the ‘left and right-click’ as you would do with a standard computer mouse is that it has a ‘sip and puff’ function…a sip for a left click and a puff for a right-click. Try it next time you use a drinking straw!
I was part of a programme where, on discharge from hospital, the charity Aspire gave me an Integra mouse with the understanding that once I was back home and my finances sorted, I would reimburse them at a later date. This is an amazingly kind gesture and one they offer based on honesty and trust. Aspire advertise in most hospitals, disability websites and disability magazines. Your discharge nurse or OT would also be good to ask, and they should point you in the right direction.
After a few years of using my Integra mouse to operate my laptop, the on-duty OT introduced me to an Eyegaze device by chance during a visit for a separate matter. This device works by a camera tracking your eye movement, and you control the mouse on the screen in this way. It is an amazing piece of technology, but after about 5 minutes, my eyes get very tired.
The arrival of the voice-activated Alexa is another fantastic piece of technology that I find extremely useful on a daily basis. From creating a shopping list, controlling the music around my house, switching my lights on or off, setting reminders or alarms, the list is endless. It can sometimes be hard trying to communicate with the device as my voice can be quite faint and I have to have a couple of attempts at instructing it, but I get there eventually!
Finding the aids that work for YOU in your new life is the most important thing. Remember that what one person uses might not suit you, and it may be the case that you need to try a few different things before deciding. It’s ok to do this. These tools are going to assist with your day to day life so you must be comfortable and confident using them.