I’ve tried to manage my tics a number of different ways over the years and one of the most effective for me has been through practical solutions and interventions that make life easier and safer.
Several years ago I did a round-up of all these interventions, and I often share it with others who might find it useful. But it’s quite out of date now, so I thought I’d re-visit this post and bring it up to date with all the kit that helps me lead a happy and independent life.
As well as describing the equipment I use, I’ll also say who provided it or how it was funded. My kit falls into six main areas, which are depicted in the drawing below. Each area has a different colour.
Sleep = Dark Blue
Mobility = Orange
Personal = Light Blue
Practical = Pink
Pain = Red
Safety = Yellow
1. Profiling Bed – Occupational Therapist: A powered bed that means I can change my position using a remote control. It means I can sleep at a comfortable angle and change the bed’s height so it’s easier to transfer to my wheelchair.
2. Weighted Blanket – Self Financed: This provides deep pressure and helps me to feel calm and get to sleep more easily.
3. Lavender Spray – Gift From Leftwing Idiot: it’s a simple intervention but it really helps me.
4. Satin Sheets – Occupational Therapist: These super slidey sheets mean it takes less energy to move myself when I’m exhausted.
5. Hanging Grab Rail – Occupational Therapist: I use this to pull myself up from lying to sitting.
6. Drop Down Grab Rail – Occupational Therapist: This classic next-to-the-toilet grab-rail has saved me from some nasty falls.
7. Grab Rail – Occupational Therapist: I have a long wooden rail in my hallway. It’s elegant like a ballet barre but means I can hold on when I need to.
8. Orthotics – Hospital Orthotics Team: Before being a regular wheelchair user I tried lots of orthotic splints and boots to help make my walking less wobbly – for a while these helped and they certainly prevented me getting more injuries.
9. Parking Badge – Local Authority: This badge allows me to park in disabled bays as well as giving me greater flexibility when parking in other places too. Being in receipt of certain benefits can make it easier to get this badge but Councils should have some discretion in this area. The rules around eligibility have recently changed – you can find out more here.
10. Mountain Trike – Self Financed: This was an expensive piece of kit, but I used a finance scheme to pay for it slowly over a number of years. There are lots of all terrain options. Look out for a dedicated post on this soon.
11. RGK Wheelchair – Access To Work (AtW): This is my newest piece of equipment and it has already made a huge difference to my life and work. Access to Work provides the practical support that working disabled people need and they can fund specialised equipment that’s not available on the NHS. For more on the difference the right chair can make, check out this blog post.
12. NHS Wheelchair – NHS Prescribed: This wheelchair came via my local wheelchair services team. Your GP or other health professionals can refer you for an assessment. In many areas of the country the wait for this can be quite long. After many different chairs I’m now understood by the team to be an active user – this affects the type of chair they provide. They’ve tried really hard to get me the best chair they can and introduced me to things like my frog leg castors that are shock-absorbing.
13. Izzy Wheels Wheel Covers – Self Financed: These colourful wheel covers are made by Irish siblings who work with artists to produce an incredible range of designs. The other way of adding colour to your chair is to use the spoke guards used on motocross bikes.
14. Wheelchair Tools – Access to Work: These tools came with my wheelchairs
15. Banana Board – Occupational Therapist: This board helps me slide across from one place to another meaning my support workers need to lift me less.
16. Bath Lift – Occupational Therapist: My bathroom is the least accessible room in the castle, especially for getting in and out of the bath. But this lift helps and can be moved out of the bath really easily if someone else wants to have a soak without it.
17. Lidded Cup – Self Financed: The search for the perfect lidded cup has been a long one. Fat Sister recently found these camping cups – they look great and come in a wide range of colours.
18. Adjustable Table – Occupational Therapist: A table on wheels that goes over my bed enabling me to eat or work in bed.
19. Water Bottle – Self Financed: This plastic squeezy toddler bottle works brilliantly for me too.
20. Plastic Cutlery – Self Financed: I haven’t been able to find good strong plastic cutlery since the very first set I got over ten years ago. These are the closest I’ve found, but I’m still on the lookout for good, safe cutlery options.
21. Pill Organiser – Self Financed: I set reminders on my watch and my phone to remind me to take my medication, but I was finding I often couldn’t remember if I’d actually taken it or not. My support workers put a week’s worth of pills in this organiser and it’s labelled day by day – if the medication isn’t there, I know I’ve probably taken it! It’s simple but it’s been very effective for me.
22. Commode – Occupational Therapist: My bladder isn’t very strong, and I need to wee often. This was disrupting my sleep, but having the commode next to my bed means my sleep is disrupted much less, I don’t have to travel as far and I’m in less pain as a result.
23. Catheters – NHS Prescribed: I use catheters to get a good bladder-empty a couple of times a day to help prevent infections.
24. Pull Up Incontinence Pads – NHS Prescribed and Self Financed: I use these when getting to the toilet might be an issue. The NHS ones I was given were very uncomfortable so I supplement these with Tena’s black pull ups which are a much better fit for me.
25. Straws – Self Financed: I’ve written a lot about straws in the last year and my good practice guide is here. For me plastic straws are essential for drinking away from home.
26. On Lap Baby Strap – Self Financed: When Bean was smaller this is how I carried her safely on my lap.
27. Bike Lights – Self Financed: While I was in Chile I met a wheelchair-using comedian who had these bike lights on his chair – I thought this was a great hack.
28. iPad – Work Equipment: This changed how easily I was able to draw without my tics messing up my work. I also use it to make notes of things I want to say in meetings so I don’t forget them.
29. Apple Watch – Self Financed: I got this the other day. It can be calibrated for wheelchair users so it counts pushes rather than steps. It also vibrates to remind me to do things that I’m otherwise likely to forget. My friend who also has Tourettes has set his up to text his family if his tics intensify or if he falls.
30. Tourettes ID – Tourettes Action: This ID card is a safety net for me and explains that I have Tourettes – this is particularly useful when dealing with people in positions of authority or power like the police.
31. Wipe Board – Self Financed: I have two wipe boards to help me remember key things.
32. Camera Protector – Self Financed: This rubber protective case for my camera has saved it and me from some motor tics where it’s been dropped or head-butted.
33. Remote Plug Sockets – Self Financed: These allow you to turn anything on or off using a remote if it’s plugged into one of these sockets. I use it for my bedroom lights.
34. Theraband – Physiotherapist: Stretch band for doing physio exercises and stretches.
35. Swim Collar – Self Financed: I wear this if I want to have a bath or when I’m swimming and want to be a bit more independent from my support worker.
36. Water Weights – Self Financed: I wear these in the water when I’m practicing standing up. They slow down my movements and mean I can feel where my legs are more easily.
37. Flippers – Self Financed: Recommended by my hydrotherapist, these are helping me strengthen my legs in the pool.
38. Portable Picnic Blanket – Self Financed: This folds down very small and means I always have something to lie on if needed.
39. Pacing Tool – Self Financed: These fridge magnets from Stickman Communication really helped me understand the concept of pacing and how to make it work in my life.
40. Pain Relief Bear – Self Financed: My regular pain medication travels in this bear pouch.
41. Recliner Chair – Occupational Therapist: My profiling bed made a big difference to how comfy I could get but it also meant I ended up in my bedroom a lot. Or at least this was the case until the occupational therapist ordered me this reclining chair. With it, I can use my living room more comfortably again.
42. Hot Water Bottle – Self Financed: Holds its heat all through the night to ease pain – just make sure it’s not too hot or used in the same place over and over again, otherwise it’s bad for your skin!
43. Heat Packs – Self Financed: As above but it holds heat less well – good for short bursts though.
44. Telecare Pendant – Social Worker : The button I wear to get help urgently.
45. Telecare System – Social Worker: This system means I can be on my own for short periods of time if one of my key contacts who live within sprinting distance of the castle can be on call. The alarm is monitored by a team who can speak to me via the device and call my emergency contacts as needed.
46. Emergency Bag – Self Financed: This bag made for wheelchair users sits on the back of my chair and contains everything I need if my tics intensify. It contains my medication, recording forms, my helmet, ear defenders and a ‘no ambulance please’ sign.
47. Smart Phone and Pouch – Self Financed: Pretty much everyone has a phone but as a disabled person my phone has the added importance of being a key way of calling my friends and family for help if I need it. I love the Quokka bag system that allows different bags and pouches to be attached easily to your chair so it is always within easy reach should I need it.
48. Recording Sheet – Self Financed: This is used to monitor my ‘ticcing fit’ episodes.
49. Medication Pouch – Self Financed: I keep my medication in a zip-up pouch in case it spills and so it’s easy to find in a hurry.
50. Medication – NHS Pre-payment Card. If you have lots of regular prescriptions that you have to buy yourself, you can make a one-off capped payment of around £100 each year and get as many prescriptions as required at no additional cost.
51. Helmet – Self Financed: The rugby helmet I carry with me just in case I need to come out of my chair during a ‘ticcing fit’ onto a harder surface than is ideal.
52. Padded Gloves – Self Financed: These are what I get most questions about. We’re currently working with a designer to create our own. If you need an immediate solution here’s my post on how to make a pair using tubi-bandage.
53. Knee Pads – Self Financed: I’ve used a lot of knee pads and for me, volleyball pads are the best because they’re light and allow for a good range of movement. I’d love to have some in brighter colours though!
54. Arm Protectors – Self Financed: Made for rugby players, great for arm biters like me.
55. Radiator Cover – Self Financed: Made with small children in mind but really good to stop my limbs getting burnt on the radiator next to my bed.
56. Mats – Self Financed: These folding mats help me manage my fluctuating pain and energy levels. I take a mat with me when I travel or when I’m working away from the castle.
57. Wireless Alarm – Self Financed: integrated alarm systems can cost loads so I use a wireless doorbell which does the trick very well and means I can take it with me when I travel.
58. Buzzer Caddy – Self Financed: This soft cube is where I keep my alarm and light controls so I can find them quickly in the night.
59. Nimble Safety Cutter – Self Financed: So simple, so small, so safe – this little thimble cutter meant last year I could wrap my own Christmas presents for the first time in years.
60. Catheter Mirror – NHS Prescribed: This mirror helps me see where the catheter needs to go.
Without item 28 – my iPad – this drawing would have been much harder and more frustrating for me to complete.
I’m always looking for new ways to make life easier so I’m sure this list will continue to grow. I also know that other disabled people are often brilliant at finding practical solutions and life hacks. If there’s something that helps you that’s not listed here please do share it by commenting below.
The cost of all this extra equipment quickly mounts up and not everyone has access to the resources they need to get them. There’s a list of organisations that give grants to individuals here, and Money Advice Service may be able to offer advice on money or benefits too.
Along with this post you might also find my essential A to Z useful as well.
Making adaptations and asking for help isn’t a sign of weakness but a sign of strength and insight. Trying out solutions and finding what works for me has made me happier, healthier and more independent.