Parkinality columnist Julie Walker’s A-Z of living with Parkinson’s disease: E is for everyone else, equipment, elevators and entrances

Parkinality columnist Julie Walker, 57, of Bishop’s Stortford, writes about living with Parkinson’s disease (PD). In the latest part of her A to Z of PD, Julie takes a look at the letter E.

EVERYONE ELSE

The Wise-ish Man said, in one of his wise moments, that “there is more than one victim” in any life-changing event.

On diagnosis, the focus, quite rightly, is on the person who has been diagnosed. They get the leaflets, the neurology team, the emotional hugs and empathy. But what about everyone else?

A diagnosis will change the life of the person with the condition, but it will inevitably affect those closest to them, such as spouses and children. These people must not be overlooked and should be offered support.

EQUIPMENT & ENABLERS

As my PD progresses, I am acquiring more equipment to help me with my everyday life. Medication, walking stick, wheelchair, blue badge, radar key, sunflower ‘hidden disabilities’ lanyard, to name a few.

I could get depressed and think of these as annoying. Instead, I need to think of these as positive as they enable me to do more things.

The blue badge enables the car I am travelling in to park close to entrances and exits. The unpredictableness (is that even a word?) of PD means that sometimes, when arriving in a car park, I could be walking well, which sometimes leads to accusatory looks from passers-by for parking in a disabled space. Conversely, I could be physically disabled by PD and get empathetic looks as it is obvious why I need the space.

As I have said before, don’t judge a book by its cover. Many disabilities are hidden and many PD symptoms are invisible.

The radar key enables me to access lots of accessible toilets. This is useful for both PD and Crohn’s disease.

In my quest to jazz up disease, I have a diamanté walking stick which enables me to keep my balance when I walk. A while ago, whilst standing on the tube, I was having difficulty keeping my balance. I asked a young man whether I could sit down. The guy looked at the stick, apologised and said sorry - he thought my glitzy stick was a fashion accessory.

Each time I gain an additional piece of equipment it takes me a while to come to terms with it. My latest is a wheelchair/walker. It can be used as a walker and, when I can no longer walk, it transforms into a wheelchair. I took this out shopping with my daughters. It is difficult to accept, as a former semi-professional shopper, that I need this help. But my walking was so slow and I was so unbalanced that it was safer to travel in the wheelchair. It enabled me to shop.

ELEVATORS, ENTRANCES & EXITS

I have written before about my fear of elevator doors. The sensors on the elevator doors are programmed to shut when no more movement is detected. The problem arises when PD causes me to freeze in the open elevator door.

People with PD often freeze when moving from one area to another. Freezing has nothing to do with the cold. It is when your feet won’t move, similar to being frozen in ice. When I freeze, sensors think it is safe to close the elevator door. If I am inadvertently in the way they tend to gently bounce off of me, repeatedly, trying to shut.

As I am not and, currently, have no plans to be cryogenically frozen, a la Hans Solo, I need to unfreeze and move. This takes concentration, which can involve anything from counting out loud or in my head, to imagining I am doing keepie-uppies in an attempt to get my feet walking again. Any distractions might interrupt my thoughts and mean I have to start again.

When you offer an arm to someone with PD to assist them when entering or exiting an establishment, they might appear to dilly dally in the doorway. The person with PD is not pausing for dramatic effect. And they are not (usually) waiting for a moment to step across the threshold, arms outstretched, announcing “dah nah”. Instead, they are trying to process the changing information, such as the narrowing of the doorway and the changing floor texture.

A little silence and thumb twiddling whilst you wait patiently for me to get my feet moving would be appreciated.