Life Post-TBI
Towards the end of your time in rehab, your nurses and therapists will prepare you to be as independent as you can. They will want you to mobilise safely and complete your daily tasks where possible.
You will slowly get used to being home again, and your community occupational therapist will be a great source of support for this. Learning new ways of doing things will be daunting initially, but it will soon become more natural.
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In the section below, I've included a few things I've found useful.
In The Community
Getting readjusted to being back in your local community will take time. I've noted a few things I find useful. These are all UK-based but will hopefully give you an idea of what to look into if you live elsewhere. My biggest piece of advice is to take things slowly. I've included the website links to apply for these in my helpful bits and bobs area
Blue Badge
Apply to your local council for a blue badge. Each council has different rules; some will charge you for parking or only allow you a certain number of hours (or even both).
You need to complete an application form with questions about your disability, such as the distance you can walk unaided.
You'll also need paperwork to prove your disability. I've used medical letters or reports.
Public Transport
Your council should do a bus pass. This offers free travel between certain hours, and some also allow for a companion.
For train travel, you can apply for a disabled rail card via National Rail. These are sold for a year or three-year period. They give you a 1/3 off the ticket price for you and a companion.
Similar to the Blue Badge, you will need medical paperwork.
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Check with your local authority as to what community transport schemes they run.
Community Access
I have limited peripheral vision, so it takes me much longer to cross the road or navigate obstacles. With my balance, I notice cambers and uneven pavement much more. Make sure you take your time and reacquaint yourself with your local area.
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In shops, I look for obstacles like shelving units or mobile card stands; I've come close to taking out shelves with fragile items and had a near-miss with a card stand.
Don't forget your radar key (a key for accessible loos) when you are out for a meal or shopping. It saves you from asking the staff to open the door for you.
Some Things I've Picked Up
In this section, I've shared some adaptations I've made to my life and included links to products I've been using. These products are amongst those featured on the "Helpful Bits" page.
My new theory is that while you can still practise things you did before if you find a way to make something more manageable, go for it! With ataxia, I struggle with buttons and laces. I've now taken to wearing leggings and slip-on shoes.
I found these excellent no-tie shoelaces. They are fiddly to fit but save so much time when getting dressed and come in various colours. I also like these cord shoelaces. I had them when I was younger, but they work well now and are easy to use. You pull them tight and twiddle them together. The set I have comes in a multipack of colours.
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I buy my leggings from a company called Llama Leisure Leggings. They are fantastic, incredibly comfortable, have bright and colourful designs, and are reasonably priced! They also make shorts, capri leggings, sweatshirts, and " joggers" (looser leggings). They've been an absolute lifesaver for my ataxia.
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I have lousy proprioception issues in my left hand and foot. I have found ways to make navigating my way around the house safer. For example, if I climb stairs with both feet facing forward as you would usually, my left foot doesn't feel the set, and I'm more likely to fall. If I put my feet out to the side (like a duck), my whole foot is on the ground, so it's much safer.
When I'm out in town using my walker, I tend to use cycling gloves. These help with my proprioception, especially in wet weather when griping the handles is more challenging.
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Using a laundry basket with wheels is a great way to transfer your laundry from the washing machine to the tumble dryer. If your appliances are at floor level, I highly recommend a stool to sit on. I use a regular kick stool, but plenty of other options exist. These are the basket and stool I use.
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A quick tip: if you have any problems with your vision (for me, it's limited peripheral vision and only a small amount of depth perception), if you're pouring a drink from a bottle into a glass, rest the bottle against the glass. You could end up pouring the drink over the table instead (been there, done that)!
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My Rehab Routine
Following my stroke, the effects I have been left with proprioception, ataxia, weakness and loss of sensation in my left limbs. I also have partial loss of vision, and my mobility has been affected. Below are some bits from the routine I've been following.
“I really don't think I need buns of steel. I'd be happy with buns of cinnamon.”
Ellen DeGeneres
Physiotherapy
I've got exercises I've been doing since rehab and have continued since coming home. Now I'm home. I've adapted my exercise regime. I've restarted Pilates. This is something I was doing for years before the stroke, but it has been the most beneficial in my recovery so far. I do two hours a week with my instructor and roughly 30 minutes via my fitness app at home. This app has pre-recorded videos from professional instructors and covers everything from core workouts to HIIT to meditation. I also have individual exercises, including leg raises, bridges, step-ups with a fitness block, and stability exercises using a wobbleboard and a giant gym ball. I go swimming once a week. This has been excellent at helping rebuild my core and general fitness. The app I use has workout sessions that last for different amounts of time; I tend to stick to the ones that are about 20 minutes and aim to do these once every other day. I've also been boxing with someone wearing pads and moving their hands around to test my standing balance and flexibility. When it comes to any balance-related exercises, it's safer to do them with someone. You will find the list of equipment I've been using on the product suggestions page.
Occupational Therapy
For OT, I've got a sensory bag of various items. My bag has buttons made of different materials, a keyring, sandpaper, a belt buckle, and other bits. I bought a pack of giant cards. They are bigger and so much easier to handle. Both cards and board games with small pieces, such as Cluedo, are helpful for finger manipulation and fine motor control. When working on my grip and vision, I've been using a stress ball as it works on my grip and hand-eye coordination. I found that my hobbies of tie-dye and gaming have also helped with this. To practise grip and fine motor control, I've been playing Jenga and will use my left hand to pick up small items, such as a connect four counter. However, since being home, I found that going out in the local community is the best practice from an OT perspective. A lot of this also relates to PT skills; for example, in the supermarket, you have to be able to keep your balance and transfer your weight safely to be able to take items off the shelves. In a café, practising your sit-to-stand is essential. On one occasion, I slipped and fell backwards when trying to stand up. I was fine (other than a dent to the ego). I've been using a combination of a walker and nordic pole for community access.
Speech Therapy
I've been practising by going out into the community. Due to my loss of ability to touch type, I'm using a microphone with my computer. I have a MacBook Air and use a dictation app called "Dictation - Speech to Text." I currently pay £17.99 per year (2023). Having a microphone makes you annunciate your words incredibly clearly, and it's probably more pernickety than a human therapist. Going out into your community will give you plenty of practice for speech therapy! I also have a facial massage twice a month to help the weaker side of my face.
I have linked the products I've been using on the "helpful bits" page. If you would like any more information about therapy exercises or products, please send me an email. One big thing I would say is don't beat yourself up! If you have a day when you're tired or only manage one thing and feel wiped out, that's fine. The brain needs time to rest.