The single most challenging thing I have needed to do on this seven-year journey with a functional neurological disorder (FND) is formalising the diagnosis. Formalising the diagnosis requires me to be honest with myself. Meaning I can no longer mask or hide from my unusual walk (FND gait disorder) and other unusual symptoms. As a fiercely independent person who spends the majority of my time, I am advocating for people with disability. Turning the spotlight on me is a process I have been trying to dodge for years. However, this is needed. The first step is collecting evidence that demonstrates my limitations and weaknesses. The data capturing exercise and formalisation of reports, symptoms, and statements of a seven-year journey of denial. This is a big step for me.
In phase one, the first step was meeting with the FND specialised Occupational therapy (OT) team. After introductions, the goal is to document the initial steps in applying to access the National Disability Insurance Scheme (NDIS.) Formalising my functional neurological disorder (FND) as a disability was the first roadblock I needed to overcome. I have been sitting on this for a few months now. I finally have the motivation and headspace to start telling my story and capturing the required evidence to build evidence for an NDIS application. Going through this process is raw, degrading and a focus on my limitations rather than my positivities. Although I am one of the lucky few who does not develop nor have a psychosocial disability in partnership with FND, It has defiantly been mentally taxing.
When I left the hospital a little over three weeks ago, I wrote my social worker an email with the below goals. For me, this was the first time I put pen to paper and documented both my goals and FND symptoms
- Gain a formal diagnosis, including validation in a report from a Neurologist. Defining the diagnosis of a functional neurological disorder (FND), chronic pain, tremors etc., stating the long-term and permanency of my FND disorder (since 2016 on my discharge summaries.) – of note, I do have FND diagnosis on referral letters, discharge summaries, doctors files etc. however the ‘formal’ letter of diagnosis has never before been required.
- Have multidisciplinary teams validate my diagnosis, confirm permanent disability, and the need for ongoing routine therapy (Physio, OT, personalised Gym/training program for this.) for the maintenance support of FND, incorporating my chronic pain.
- Help to bring my Pain Specialist and Neurologist together to work in tandem regarding pain management & medication management.
- Understand who my essential treating specialist is, and have assistance if required to set up new relationships and build a team around me that will advocate and support my FND diagnosis.
- Work with the Allied Health team regarding reports, i.e. functional assessments, reports, treatment plans, and goals (short, medium & long term.)
- Develop a plan for flair-ups, and what are the triggers for treatment and warning signs I need to listen to? What is maintenance? How do I learn to read and understand my body and symptoms and find a pace that provides the best balance?
- Understand the medical equipment I need (crutches, walkers, aides at home etc.) and establish a plan on when to increase and decrease use etc.
- What’s my treatment plan, short, medium and longer term?
- Help apply for a mobility parking application to ensure I can continue driving and get places without fatigue.
- Slowly gather evidence for NDIS application; to ensure I have a continued quality of life and a management plan to maintain functionality.
- I need to continue to work, maintain my mobility, and be there long-term for my family. How will I do this? What will the supports look like to ensure I can manage the pacing and flare-ups without the need to return to inpatient hospital treatment?
My symptoms of FND
The first task with my occupational therapist was to look back and document my symptoms over the past seven years. Again, this has been a confronting task and one that has been difficult to put into words. So with the help of a few websites, medical notes, and my personal observations, I gave it a crack to document my symptoms
- Abnormal movement, including tremors, difficulty walking, and gait (walking) problems.
- Loss of balance when fatigued, obstacles in my way (people walking in front, needing to turn a corner), and when initially standing or getting up from a chair or out of a car.
- Involuntary movements, tremors, jerks, spasms and difficulty walking. This increases when walking over distances and towards the end of the day—needing crutches to walk currently. Sometimes I walk without aides; however, the about symptoms are present. However, I can cover them up easier. In addition, tremors, spasms and jerky movements also occur after sitting for long periods.
- Sudden, brief involuntary twitching or jerking of a muscle or group of muscles (called myoclonus) occurs if someone walks in front of me or is an obstacle in my way, also during heavy exercise.
- Pain – chronic lower back pain is a trigger for other symptoms.
- Pain – joints (toes, knees, fingers, neck, hips)
- Headaches (approx monthly, behind eyes, middle of head)
- Extreme slowness and fatigue – I slow down when getting tired or in pain (including midway through a walk or while shopping), up to 75% slower, either during a flare-up or towards the end of most days, after exercise or standing and walking for long periods.
- Speech- Mix-up works when talking (I.e. naming the wrong colour & or fruit.) Mainly when at home, at weekends, and end of the day when I have finished work.
- During times of fatiuge, I can take time initate speech at times, reaching for words (mainly when I am tired)
- Boom and bust/pacing & balance
I need evidence of the last 6-7 years of my life somehow. Yes, there have been lots of good periods. We’ve been on holiday, moved homes a few times, went camping, and even done some fun runs. There were highs and lows at work & home. I still intermittently focused on my FND symptoms, as my focus was on pain management. Another difficulty during this time was the need to be available and advocate for my family. I did not blame them for my ailments. However, my choice to focus my energy on others didn’t leave time to tell my story. I don’t yet have the story to document about my legs. I accepted that it was just me, automatically made adjustments, and kept pushing until my body forced me to stop.
However, I don’t remember a time when my legs worked properly. Admittedly I could ‘mask’ my FND tremors and gait disorders; however, this compensation led to other issues. Day’s ‘pretending’ I’m ok meant a significant increase in pain or the subsequent increase in pain medication. A day in the car leads to hip swelling and back spasms. A day on my feet led to burning calves and extreme muscle tightness. Most of the time, I chose to enjoy family time, an activity or exercise. But there always was a cost, and the reward was always good, but the cost of FND meant my recovery was slow, my pain increased, and my body made me pay for the additional activities I chose to do.
Being honest with myself has been a theme of my blogs these past eight weeks. I find it extremely hard, to be frank and dedicate energy to myself. For 22 years, my family has been my no. One focus (give or take some self-indulgent moments 😉 .) Being intentional on me with them is a new concept that I am finding near impossible to master.