Each weekend, I take Anna out on what I laughingly call, an expedition. I believe that he needs to get out of the house, see new things, participate in some not-so-common activity. This belief is not based on published research. It is based in the fact that when I was ill and home bound, I desperately needed to go out. Every other day, my husband would come home from work and just drive me around for 30 mins. It helped me, and hence I think it helps Anna.

Wheelchair Woes

In India, it is a challenge to find places where I can take Anna in a wheelchair. There are no pavements to talk off. The chances of being hit by a motorized vehicle is marginally higher if Anna’s wheelchair is on the road vs on the pavement, not to mention that he could easily get sea sick riding the uneven roads of Delhi! All public parks have locked gates, and zig-zag barriers. Most shopping areas have steps (uneven to boot) and no wheelchair friendly access inclines, not to mention crowds and enough gentle jostling to tip over a walking person.

Expedition Mall

So I am left with taking him to malls. The trick is to get there before 11am, just as they are opening. There are fewer people (this makes a difference as crowds sometimes panic Anna). Malls have large flat corridors, have lifts, are air-conditioned and there is always something different going on. We have only 3 malls close to our place, and hence I take Anna there every weekend.

At first I was worried that Anna would get bored going to the same malls time and again. So each time I take him to the mall I try to do one thing that is different and one thing that is familiar.

The different thing can range from showing him the decorations from all levels (Select Citywalk is great for this), to the different colored T-Shirts that men wear now-a-days (Yes, Anna, men wear post-box red t-shirts), to the different kinds of sports shoes (one even cost Rs. 18,000/- !!). Each new thing creates a thread that can be followed as we walk the corridors.

Then comes the familiar. This is coffee! It has now become a ritual that we will drink coffee and have “something small” to eat. Tho’ Anna is happy to share coffee with me or his attendant, he can be quite a child, pouting, if I don’t divide the pastry / muffin / doughnut such that he gets the larger piece. If I attempt to leave the mall without getting him a cup of coffee, I will be reminded, oh so politely, that an essential activity have been missed out.

By the time we get home, it is time for lunch - 2ish. Each of these trips takes 3-4 hours. Each of these trips, are looked forward to (Anna is ready and waiting patiently on the sofa at the appointed time). Each trip gives Anna something more to see and think about.

When I shared with Anna’s neurologist, details of our weekend expeditions, he had a good laugh.

“I have never heard the term expedition being used this way. Such an appropriate word to use”, he said.

It is.

There is a lot of preparation.

There is purpose, there is discovery. There is creativity, there is fun.

And there is always time.

(After working in corporate India for over 29 years, Sangeeta has taken time off to look after her father, who was diagnosed with Parkinson’s Disease in 2008. Sangeeta hopes that these authentic stories will help patients and caregivers understand and appreciate the impact Parkinson’s Disease. You can follow Sangeeta’s blog here.)