My autistic friend asked me to share her story:
Her trouble started a year ago, first a shaky arm, then a one-sided headache which came and went. Then a clenched hand (on the opposite side), which would always start as she reached the end of the lane on her frequent attempts to take up running. By the end of the lane there was cramp in one hand, and she would root around in the ploughed field for a stone the right size to hold on the way home. It always needed to be a freshly picked stone. The one in her pocket didn’t work. The collection of stones dropped by the front door grew larger.
She’s a self-employed Professional in a role which involves going places and meeting people. The one-sided headache seemed to be associated with car journeys. One day, a couple of months after this all started, she got out of the car (with the headache) to meet a client (who happened to be a GP) and felt wobbly. “Like being drunk” (she says). And she tried to keep the meeting short in case they thought that was the case.
And so it became time to report this to the doctor. As an autistic person she was relieved that her GP had an online consultation form on their website. She filled in her symptoms and marked it for the attention of her doctor. There was a reply saying that the doctor will phone her. The phone rang (she doesn’t usually answer the phone) but it was going to be someone she knew so it seemed OK…. It was someone new, who was nice and kind, and thought they should take a look at this, and made an appointment. But then said the dreaded words – “It sounds like Anxiety” (Autistic people suffer from Anxiety. Everyone knows that).
“It sounds like Anxiety”
And so my friend cancelled the appointment and wondered what to do next. A couple of weeks passed. The symptoms got worse. Someone else was asked to help with a phone call, and they made an appointment with the right doctor. The one who knew what not to say. But the appointment was five weeks away. Because GPs are very busy…. Then a face-to-face appointment was followed by a trip to the Emergency Care department at the local hospital.
The A&E consultant thought it might be a tumour on her spine. Something pressing on the nerves which was making the arm shake and the hand cramp. The consultant neurologist joined the meeting and did some reflex tests. “This is Parkinson’s Disease”, he declared. Which sounded better than a tumour. “It’s why your arm is shaking, and your hand is stiff and you are wobbly”, he said. “What about my one-sided headache?” asked my friend to both consultants. – “That’s Anxiety” (Autistic people suffer from Anxiety. Everyone knows that.) they replied.
So suddenly it was pretty serious. She was told she could no longer drive, and if she didn’t tell the DVLA then the consultant would. She sent her licence back the next day and received a Blue Badge from the council the day after. She went from running (badly) down the lane to being a non-driving Blue Badge holder in the space of three months. And straight onto the heavy Parkinson’s drugs too. Dopamine replacement. The drugs that other people with Parkinson’s seem to build up to after years on the range of entry level pills available to support the dying dopamine-producing neurons.
A couple of months later the consultant neurologist reviewed her and felt that the drugs weren’t working as well as they should. So he prescribed some more to take as well. Drugs which inhibit the body from clearing away unused dopamine. Also, the instability “Should be better than it is” (he wrote) and a referral to physiotherapy was made.
She lay around feeling sorry for herself for a few weeks, but then joined the Parkinson’s UK forum and followed a few people on Twitter who seemed to be getting on with life after a Parkinson’s diagnosis. Research into how to slow her rapid decline suggested that exercise was key. Lots of exercise. This seemed difficult with Postural Instability but then she saw a report about the effectiveness of Nordic Walking and bought some sticks.
A big effort was made to get fit. She studied YouTube videos about correct Nordic Walking technique. She went out a few times a day. She got faster and stronger. But then her headache got worse. Much worse. And her hands (both now) became stiff and purple and it was difficult to grip the sticks which she needed to stop falling over. The tremor remained, and some scary new symptoms started – tingling arms, legs, lips, tongue.
She went to bed and consulted Friends and Family (all autistic, many medical) for suggestions. Two weeks in bed improved her, but two days after getting up she was back with the one-sided headache, cramped hands, tingles, and falling over. Back in bed it became clear that the headache and other symptoms went away with lying down, especially on a particular side. A medical relative suggested this might be a leak of cerebral spinal fluid. She’s hyperflexible (a commonly co-occurring thing with autism) and Dr Google said this was significant. She emailed her consultant and politely asked if a CSF leak might be a possibility.
The consultant sprang into action and ordered tests. MRI, CT, and tau (a protein which should only be found in the brain). No one actually examined her. The tests revealed nothing. The car journey to the hospital caused a huge headache.
Then one day there was Breathlessness, Palpitations, Numbness, and a stay in hospital. Another consultant got involved and ordered investigations into heart and lung function. “You need to go back to the neurologist”, they said.
Back home she stayed in bed until she was given an emergency appointment with the consultant neurologist, who (without examining her) said “This is Anxiety” (Autistic people suffer from Anxiety. Everyone knows that.)
“This is Anxiety”
She remains in bed. She’s been there for three months now. Occasionally she sits up and shows people how her hands go purple and start shaking.