Tough Tics Survivor’s Guide
It’s the eve of my fitiversary. Two years ago tomorrow I woke up having what became known as a ‘ticcing fit’. But that morning it was just a weird and terrifying escalation of my tics that left me unable to speak or control any part of my body. I had several more fits over the course of the day and I’ve had at least one almost every day since.
Similar but less severe episodes like this had been happening on and off for several years, and over the previous few months I’d found myself getting stuck on the floor, doing a dying fish impression in the bath or fighting the fireplace more and more frequently. I’d been slow to respond to what was happening and if it hadn’t been for the insistence of my friends and family I would in all likelihood have stayed in danger and in denial for even longer.
While episodes like these aren’t part of the classic presentation of Tourettes (and aren’t widely documented), I know that a lot of people with the condition do have them. I’m aware, too, that the understanding of and responses to ticcing fits varies a lot depending on where you live.
The remainder of this post is aimed at people who find themselves where I was two years ago, facing the challenges of increasingly severe tics, reduced mobility, worried friends and family, and professionals with little experience of how to respond. Based on my own experience, here are a few things to think about, ask about, and expect.
Are things getting worse?
In recent years I’ve sometimes found it quite difficult to tell if my tics are getting worse or not. But there were some key developments that made my life much more challenging. They included tics that affected my mobility, and the arrival of the fits. Here’s a list of things that might indicate it’s time to seek additional support:
• Tics that affect your walking or mobility
• Tics that are resulting in frequent or serious injuries
• Tics that are having an impact on your ability to take care of yourself – for example, washing or cooking
• Ticcing fit episodes resulting in complete loss of motor control or loss of speech
• Tics that are putting your work or education at risk
• Tics that mean you’re not safe on your own
This might seem like an obvious list, but I know that it took me a long time to see the seriousness of my situation. Sometimes things gradually deteriorate and sometimes there’s a sudden change. Either way, recognising this and not putting off getting help is important.
I hoped things would get better, I told myself that it wasn’t too bad yet, and I promised my friends I’d discuss my concerns at my next hospital appointment. It was an understandable response, but a silly one. In reality it meant my life became increasingly restricted and put unnecessary pressure on those around me.
It doesn’t have to be that way, but it’ll only be different if you make it different.
I need help – what next?
This is the bit that’s likely to vary depending on your location and circumstances, but here’s a rough list of what to do next.
• Arrange an emergency appointment with your Tourettes specialist. Don’t wait for your next scheduled appointment – ring up and explain how things have changed. Call again each time you’re injured or at risk. If you haven’t got a regular specialist ask for an emergency referral. Tourettes Action have a list of Tourettes specialists which they will let you have.
• Visit your GP and explain in detail what’s happening and how it’s impacting on you and your family. Ask for the referrals you need, and make sure your GP takes advice if they’re unsure how to respond. Don’t be fobbed off – keep visiting every time there’s a new incident or risk.
• If you injure yourself, are in pain or experiencing a ticcing fit that isn’t ending, go to your local A&E or call an ambulance if necessary.
What to expect them to do
How medical professionals respond will vary but I’d expect most to do some tests to rule out other causes and establish that your symptoms relate to Tourettes.
I’d expect that medication options would be discussed with you. This can help some people, but lots of the medications have unpleasant side effects. Don’t feel pressured into treatment, ask as many questions as you need to. Some medication might be regular and some can be taken in an emergency as needed.
Make a care plan with your doctor. I’ve found that a key part of managing my ticcing fits is having a clear plan about what other people should do if I have one. This is important so they know what to do but also so I know what to expect. The plan should include information about communication preferences, medication, and who to contact when.
Ask for referrals and supporting letters as necessary. While there might not be much that can be done to change the actual tics, support and practical interventions can make a big difference to how easy they are to live with. Talk to your medical team about who else may be able to help. There’s a list below of other services and professionals who may be of use.
If your doctor is unfamiliar with Tourettes or hasn’t had previous experience of it presenting in this way, ask them to seek advice, or ask for a second opinion. Information on what to do if you’re unhappy with the care you’re receiving is available here.
Recording, diary keeping and video
Recording the dates, times and length of ticcing fits or other challenging tics can be really useful both in terms of checking for patterns and knowing if things are getting worse or better. It can also be useful for showing how much support you might need and when. Videoing your tics can also be useful to give doctors and other professionals an idea of what you’re experiencing. For example my social worker used video of me to help the panel making decisions about my care package to understand the impact my tics were having.
Professionals and services that might be helpful
Every local authority in the UK has teams of social workers whose role is to safeguard the wellbeing of people (both children and adults) who are disabled, vulnerable or in need of support.
Eligibility for these services varies but if your tics or associated conditions are having a substantial impact on your safety, independence or quality of life, get in touch with your local authority and ask for an assessment. They may not have provided services to someone with Tourettes before but be persistent, provide information and challenge decisions if necessary. It can be helpful to ask how they respond to people with other neurological conditions. If you have significant savings or income you may be asked to make a contribution to the cost of your care.
Please don’t wait if you’re struggling. Contact you local Council and self-refer, or ask your GP or Consultant to make a referral for you.
Despite having worked in social care I didn’t ask for help until I was absolutely desperate and had spent many days stuck indoors unable to go out or to meet my basic needs. My social worker provided a package of support within days of meeting me, and it transformed my life.
Occupational therapists (OT) can help with the things that your tics make difficult, such as bathing, or getting to the shops. They can help by suggesting different techniques, making changes to your environment or providing new equipment. My OT provided me with a bath lift, grab rails and padding around my bed and, more recently, set me up with a Telecare system.
Your local council will have an occupational therapy service but OTs are often employed by hospitals too. Ask your social worker or GP for a referral to your local service.
The Orthotics Service provides and makes splints, braces and other interventions that can help improve the function of a part of the body, or reduce the risk of injury. For example, the orthotics team have provided me with ankle splints and supportive boots to help improve my mobility. Your GP, physiotherapist or consultant should be able to refer you to this service.
Your local Health Trust should have a wheelchair service. The can take a long time to be assessed, but in my experience the wait was well worth it. My wheelchair’s transformed my life and made me much more independent. My orthotics team referred me, but consultants, OTs and physiotherapists can probably make referrals too.
I received some physiotherapy after a tic-related injury to my ankle, following an A&E admission. My consultant also arranged for me to receive advice from a neuro-physio on how to manage the dystonic tics I experience during my ticcing fits. Speak to your GP or consultant if you feel this would be of benefit.
Access to Work
When my fits started one of my biggest worries was how I’d keep working. Access to Work is a national scheme that provides support to disabled people in employment. It can help by funding travel, support workers, and specialist equipment. This scheme’s been key to enabling me to carry on doing a job I love. You can find out how to make an application here.
Educational support isn’t something I’ve had personal experience of but the following organisations might be able to offer guidance. IPSEA (Independent Parental Special Education Advice) and Contact a Family’s SEN National Advice Service.
Benefits and Finance
When my ticcing fits began my care needs increased. I was already receiving Disability Living Allowance but only at the middle rate of the care component. I asked for this to be reviewed in the light of the change in my condition and was awarded the higher rate. Individual entitlement to benefits will vary depending on your circumstances. Your local Citizen’s Advice Bureau may be able to offer advice about this.
Other Useful Sources of Information and Advice
There are a number of other voluntary sector organisations that maybe able to offer help and support. These include Local Disability Advice Services, The Disability Law Service, The Disabled Living Foundation, Tourettes Action, and for children and young people, Contact a Family, Cerebra and The Family Fund.
Numerous small interventions have helped me over the last few years. There’s a full list here but the key things keeping me safe every day are: Knee pads, helmet, crash mats and gloves. I know other people with Tourettes have found taekwondo chest protectors useful too. If you have other suggestions please share them by commenting below.
Emotional support and difficult days
When tics get worse it can be a real shock and very stressful. Adjusting to new challenges can take time, so be patient with yourself. I’ve had very difficult days, but I’m happier and more independent now than I have been for years, even though from the outside things may look worse.
Reach out for support when you need it. You can do this through Facebook groups, by contacting the Touretteshero team or by calling the Tourettes Action helpline.
You might also want to consider writing a message to yourself when you’re feeling positive so that you can read it to yourself on more difficult days.
New tics and increasing support needs can put pressure on relationships and friendships. Fortunately there are many organisations that provide support to the carers or siblings of disabled people: encourage your friends and family to seek support if they need it and to be open about how they’re feeling.
Having a strong advocate at appointments and assessments can be really useful. This person doesn’t have to be an expert, just a supportive friend or family member who knows you well and is familiar with the challenges you face. There are more formal advocacy services around the country too, so seek more formal support if you need it.
Key ideas that have helped me
• Independence isn’t about completing every task for yourself – being independent is about being in control of choices and decisions
• Feeling you’re a burden on people is a state of mind rather than a reality. It’s a feeling that’s easy to slip into, but it’s not helpful and only serves to add pressure to already challenging situations
• Ask yourself how you’d respond to someone in the same situation. Don’t be unnecessarily hard on yourself
• If something’s not working, change it, whether it’s your environment, the support you’re getting or people’s understanding of Tourettes
Whether you’re having a difficult time yourself, or care about someone who is, or are a professional supporting someone with Tourettes, please do comment or get in touch if you’d like to.
Tourettes is a complex condition and can present big challenges, but it’s important to understand that you’re not alone and that to tackle those challenges you don’t need any special strength or bravery, just the right support.