Introduction

About three years ago my wife was diagnosed with cancer in the brain. Subsequently, after a number of ups and downs, the cancer is now in remission, but it left her paralysed down one side, incontinent, and cognitively impaired. During these three years, and even as I write, we have learnt much about how to cope with our situation. My wife is nearing 60 and i am 65. We live in Calcutta in a small flat on our own, and i am her care giver.

In my free time I like to surf the internet which gives me a window into how others manage. I have come across numerous sites starting from the American Cancer Society to the NHS to travel sites for those with mobility issues.which have showed the amazing ways in which people get on with their lives despite their disabilities. Many of the sites had chat columns where someone would ask about the efficacy of a particular drug, or home remedy, or what to expect after a particular procedure and the responses were quick and practical. What struck me was how helpful people in the “same situation”were. It set me wondering as to why we couldnt have something similar in India where people with cancer, or with disabilities could tap into and share information with each other. I strongly believe that we, patient and care giver, have to help ourselves. Society has its own priorities, just as we did till a few years ago, and there is just so much one can expect. The main responsibility for getting on with our lives lies with us. If we don’t step forward and help each other, who will ?

This blog seeks to provide a platform in which people with cancer, or with disabilities, or even older people can share information on the ways in which they cope. Where can you get cancer medicines at a less expensive rate? Are India made cancer drugs as efficacious as their overseas originals.? Can you store these medicines at home ? Where in the fridge do you have the right temperature for storage ? How much can you expect treatment for a particular type of cancer to cost ? How long will the treatment last ? What are the common complications that you can expect ? How do you deal with complications ? Where do you get a good physiotherapist ? What are speech and swallowing therapists ? How long might it take before you can walk on your own ? How much does a wheel chair cost ? How do you handle toilet issues ? How do you transfer from bed to chair or bed to commode ? Where do you get the cheapest adult diapers ? What precautions do you take against infection ? How do you get into a car ? How do you manage the whole operation i.e. the patient, the doctors, the tests, the hospital, the home, your work, your emotions and those of loved ones ? How do you handle the enormous stress that seems to magnify even little things completely out of proportion ? How do you manage incontinence ?  How do you handle loss of appetite ? What do you do for chronic UTI ? How do you get your principal to stop feeling she is a patient and needs to get up and get going ?  Can you travel with a disabled person, and if so, how ? Which are the places that are wheelchair accessible ? What benefits are disabled people entitled to  from the government ? How can you as a non disabled person, non care giver, help ? The list is only illustrative. Whatever will get people in our situation up and going is welcome.I will be putting up stuff hopefully once every week on one or other subject. The blog has an interface where anyone who would like to comment or has something to share can do so. Well so much by way of introduction. Here goes.

Airline travel

Last week I was pleasantly surprised to discover the existence of a website called billionables ( http://www.billionables.com ). Among other things, this site systematically lists out cities, and then in these cities, places of interest, restaurants, markets, monuments, places of entertainment, etc. that are wheelchair accessible. This is something I have been longing to do for over a year. So happy to see someone has actually done it. At present the information available is somewhat sketchy and there are many empty slots. What it will take is for people like us to fill up the spaces one by one so that what we have in effect will be a wheelchair map of the country. The site also has helpful sections on travel. I thought I could supplement some of the information furnished so as to make it of more practical use.

AIR TRAVEL

Airlines all have a section in their websites on provisions for the disabled. It makes good sense to go through the provisions as not all airline staff are helpful. What you need to know is that wheelchairs are  available from the check in counter ( not from the alighting platform ) to your seat in the aircraft provided you inform the airline in advance, both at the time of booking your tickets as well as again three hours before the flight. While disembarking the airline wheels you from your seat right up to the exit. No separate arrangement is required to be made by you at the other end.

Airline staff however sometimes try to browbeat severely disabled passengers who they perceive may hold up their flight by demanding a medical certificate certifying the passenger is fit to fly. As per the Air India website, a medical certificate is required only under four circumstances ; if the passenger is on a stretcher, if the passenger requires oxygen in flight, if the passenger needs additional leg room and if the passenger needs medical equipment on board. In no other case is a medical certificate called for.

Regarding carriage of wheelchairs airlines have a number of restrictions if the chair is battery operated. For manually operated wheelchairs there are no restrictions; Air India clearly says in its website that there is no charge on carrying of wheelchairs. In the case of Indigo I was pleasantly surprised to find that no charge was levied though their website says nothing on carrying wheelchairs free of cost.

Indigo also has provision for pre booking seats of ones choice, albeit at a premium. Seats in the first row, which have a little more leg room and less distance to walk go for an extra Rs 500/- per seat.

Airline websites clearly state that while cabin staff can assist disabled passengers up to the toilet door, they cannot help inside the toilet. In case such help is needed then the passenger needs to be accompanied by a helper.

Calcutta and Chennai airports have separate toilets for the disabled as do all the larger airports in the country I am sure. Unfortunately there is no place where a disabled person can lie down and have his / her diaper changed even though most flights from door step to door step take anything between 5 to 7 hours. Further more, wheelchair users are required to report one hour earlier than the others. Restricting fluid intake on the day of the journey, wearing an extra heavy diaper with an additional inner pad and carrying a molly sheet or disposable under pad is how we manage. Not a pleasant experience