New AFOs for Vineet !! (Blog dated 13th February 2020)

Hello everyone!
Happy New Year!!
I know I know I'm late as always😜but since this is my first post for the year, better late than never 😊
I wonder if I've ever made a post about Vin's AFOs  Nevertheless, here goes...

So the first pair AFOs that Vineet got was in April 2007 when he was 8 years old. Before that , at the age of 5, he was put on 'Dennis Brown Splint' to cure his slightly clubbed feet and to rotate his hips inwards at the prescription of the only proper Orthotist we have here in Asansol.

Dennis Brown Splint no. 1

Dennis Brown Splint no. 2

No, I'm not going to refer him to anyone as he's ridiculously expensive even though he may be good. Good part of the story is that he was the one who referred us to "Mobility India"  in Kolkata. That place was very good and reasonable and we went there twice for Vineet's AFOs as he grew older until in 2018 when he outgrew the 2nd pair .We wanted to get him new ones but  came to know that that place had shut down for repair and construction works. In that emergency, we went to our old Orthotist who gave us highly (read 'ridiculously high') priced options and we never went back.

AFOs no. 1

AFOs no. 2

In short, the material for AFOs are of various types and designs. Some patients who can walk also need AFOs and theirs is different from the ones Vineet wears as he has no walking needs. I won't go into the details here

To the rescue - AMAZON !

I was so proud of myself when I got a pair of  AFOs online from Amazon for a very reasonable price  (Rupees Two Thousand four hundred for a pair).But later I realized, these wouldn't work as a lifetime option as the foot part was generalised and had no 'Left' or 'Right' ankle option... I began noticing a slight bend in Vineet's big toes and I stopped making him wear them immediately.

AFOs from Amazon

Moving on...

     I did some online research and after reading reviews and pricing, we zeroed in on " Ottobock". We took an appointment on 20th December 2019 for the measurements in Kolkata. We were impressed by the clinicians who took the measurements in a very professional way and they did not take much time at all! We opted for a real snazzy pattern chosen by Vin from the many options given.

                              

We were asked to come for a trial fitting after about a month , the date they would let us know later.


                               Fast forward to August 2020

We still have not collected the AFOs (as of today, 26th August 2020) :(

Well actually, we had gotten a call from Ottobock Kolkata that the AFO was ready for trial in January 2020,  but PROCRASTINATION has its evils. And we are stuck with one of them. Grrrrr...... 

No, COVID 19 is not to be blamed here in anyway ! :P 

Here's hoping one day we will finally be able to collect the AFOs, will update in the comments when that happens.
Till then, 
#StayHomeStaySafe

UPDATE!!

So on 12th January 2021 we finally made that trip to Kolkata and collected Vineet’s newest AFOs. We had to wait for around 2 hours for the final finishing, but nevertheless, here they are! 

They look smashing I must say ! 😍 

Now Here's my 'Mommy Tip' for parents with kids who use #AFO s 

and people who use them-

I had been meaning to tell the Orthotist at Ottobock to not paste the silicone attachment to Vineet's AFO but (inevitably) forgot 🤦🏻‍♀️ I had in mind since long that I would use that attachment separately to be used for "Normal" stylish shoes as its difficult to insert the whole AFO with the silicone attachment, into them. So by the time I remembered this, we were home after a 4 hour car journey from Kolkata. But as some of you know me, I never give up on 'trying'. So guess what I did? I tried removing them myself using a blunt knife (which I didn't need thankfully!) It came off little by little and I was relieved to see it was not melted and pasted, rather there was a very very sticky tape kind of thing, so it came off neatly. And Walla! I had both the silicone attachments as a separate thing just the way I wanted ! 😎

So even though it was 11 p.m. at night, I excitedly tried them on Vineet's latest Red 🤩 Christmas shoes and they slid in so neatly !! No more red, bloated big toes due to inward folding inside shoes which did not have a zipper as in #BillyFootwear shoes 👍✌️

Billy Footwear not closing in with the AFO

Billy Footwear neatly closing with AFO silicone attachment only

Adidas shoes neatly fitting in with AFO silicone attachment only

SO now he wears the whole piece at home and we will use only the silicone part for outings 😎

Thankyou for going through🥰 Please let me know your thoughts in the comments about my tip though 🤓

Disclaimer - Vineet is totally Non- ambulatory , so this adaption works for him 😌
Also tagging @adidas to request them to make #adaptible shoes like the others

Inaccessibility in 2019. 👎

March 01, 2019

So this is the post I spoke about in my last post about Kolkata - Inaccessibility in 2019.
As I said before, we went to meet my long time friend Sita from the US who had come down to Kolkata only to meet us! She was staying in a hotel near to the airport and had suggested we do the same to save on time travelling from one end of the city to another. I was more than happy to oblige. Only, we did not get the same hotel as it was fully booked. But on reaching the area, we found that the hotel we had booked was exactly opposite theirs! It was great.

(Image courtesy - Google)

So when we reached our hotel, a grand flight of stairs greeted us at first, but wait, there was hope. A little further down the parking was a small ramp to go from the road to the pavement in front of the hotel. And then another longer one to go from the pavement to the hotel. Yay!! But wait, a car was parked right in front of the small ramp to the pavement 😑😑😑
Of course I took a pic! 😬😈

Poor papa had to go even further down and then find a place from where Vin's wheelchair could go up easily. So here the hotel had made all accessible arrangements, but the general public is uneducated where accessibility is concerned.

Vineet's wheelchair was helped up the ramp to the hotel by the guard and another staff, which was very nice , and we checked in. A lift (which was not too big for 3 persons including a wheelchair ) ,took Vineet and papa up to our room on the 4th floor. It was a nice room where there was space to maneuver Vineet's wheelchair.

(Images courtesy Google)

I had called up the "Floatel" restaurant on the banks of the Hoogly river for our dinner with Sita and family,as I had heard that there was a beautiful view of the river Ganges from the deck there.

I called up their reception to ask if they had a ramp or lift for wheelchairs to go upto the deck, to which they replied in affirmative. I also asked friends who had been there, they were not so sure. I asked on Google places, there too I got some saying yes, some no , with regard to wheelchair accessibility. But after the restaurant's confirmation, we decided to go ahead.

Sita and family were already in the restaurant when we reached (late, as always 😅) . And I was not prepared to encounter what I saw. At the very entrance, there was a flight of 2 steps, which papa is used to maneuvering by now, but not once did the man at the counter right across, come forward to help. 😶😒

Anyways, moved ahead a corridor and came upfront to a small wooden ramp which led to nowhere,and then just beside it another wooden plank which finally led to the King of all ramps!!!

Never in my life have I seen a ramp as steep as the one I saw that day!! A voice inside me said, no , you can't allow Vineet's wheelchair to go on that . No. Then I thought about Sita and her family who were already seated down below, and also , a few staff came forward to help. With a very very scared heart, I watched papa bring Vineet down the ramp facing the opposite way, with the help of 3-4 staff. And stairs again at the bottom of the ramp 😬😒😶

After that there was a small lift which took Vineet and papa to another corridor who's doors led to the restaurant. Phew!!
But all the stuff that was boiling inside me vanished as soon as I saw my dear Sita's face at the door!! I was finally hugging my dear friend of more than 10 years from another country !! It was an indescribable feeling.

We settled in and I took some time to relax and realize that just beside the restaurant a door led to a small deck outside. I asked Sita if we could go and sit there but was informed that it was crammed and a few tables were booked as well . Gone were the dreams of sitting on the deck and enjoying the view of the Ganges with my dear friend and her family.......😞😖
Nevertheless, we had an awesome time talking and having the buffet dinner. After which we proceeded back to our hotels and planned to meet for lunch at a nearby mall the next day.

#CityCentreMallKolkata

(Image courtesy - Google)

The next day, after having a great chit chat at the hotel where Sita and fam were put up, we proceeded towards a well known mall -  City Centre Salt Lake, Kolkata, for lunch.
Again. Embarrassment.
There was no ramp from the road to the pavement. 😬

Ok, that's normal to expect I guess..,😒

We had to go to the 2nd floor, so we searched for the lifts. Got them.
Then again - A huge step leading to the lift section. A very narrow door , through which Vineet's and Esha's wheelchairs barely managed to scrape through.

  By now I was seriously thinking of putting in a complaint. Thankfully the lifts were big in size and could accommodate one family with a wheelchair at one go . And there were 2 lifts (only. For such a huge mall)

So we ended up roaming on the ground floor more and finally after a fast food lunch 😜, we sat for some awesome tea. I was having mixed feelings as we were leaving for home from there itself and the Kumars would be leaving the next day. I felt so sad and empty coz it was too short a visit for a good friend like Sita❣️

{As I was about to post this, I just remembered the short and steepest ramp ever at the Hotel where Sita and Fam were put up. It was a ramp just for name's sake. To lure people like Sita who have no idea what a ramp could also look like in some hotels but on their websites they mention it and thus fool a customer, especially if they are from a distant country....whats this???? 😬😖😓   Not Done}

WHEELCHAIR NUMBER 10 (Blog dated 26th November 2019)

Hello everyone!!
I am super excited for Vin today, I mean ever since his 10th wheelchair arrived yesterday 😁

I had my eyes on this one for quite a while ever since I discovered it on https://www.wheelchairindia.com/Folding-Power-Wheelchair

I had been on the lookout for a power cum manual wheelchair with thick polyurethane tyres ever since we encountered the cobbled streets of Italy and most of Europe.

1) Let's talk about the choice of tyres first.
So the new rubberized wheels of folding, manual wheelchair number 9 started getting worn off within the first 3 days of our trip in Europe in 2017. It was kind of worrying and intimidating and we were extra cautious with his wheelchair henceforth as without his wheels, Vineet would be severely handicapped. And we too...
Hence the choice of thick polyurethane tyres for travel

2) Next let's talk about the choice of manual cum power wheelchair.
So last time with the manual wheelchair, it was quite exhausting for Papa to push Vineet all the time as the folding wheelchair had very high hand rests and impossible for Vineet to push himself manually. Hence the choice of a power wheelchair which would also work manually, in case the motor got defective😬😬 In the website video, a person without disability was able to use this wheelchair manually as well without any problem.However , when Vineet tried it on yesterday, the hand rests seem a bit high and we have yet to try out with Vineet on a seat cushion if his hands reach the wheel rims..

3) Next we shall talk about the folding aspect.
Although Vineet's wheelchair number 8 (Karma KP 10.3 ) is also a power wheelchair, it is not easily foldable . We have to remove the battery, then fold the other parts as well .This new chair weighs 42 kgs which is actually heavier than wheelchair no 8 which weighs 37.5 kgs, but we needn't remove the batteries. Just 2 folds and it's ready to be tucked into the car's boot. So we can now go for a picnic and Vineet can enjoy on his own!! 😃

Karma wheelchairs are made in Taiwan and assembled locally so I'm told. But this wheelchair is not branded and has been directly imported from China I guess, which is why the costing too has come down to half of wheelchair number 8. And that counts. The cost. While searching for this particular type of wheelchair I stumbled upon the website alibaba.com which is the gateway to Chinese products directly from the mainland. Anyone who has visited this website will know how ridiculously cheap the stuff there are. Of course it's a wholesale market and there are MOQs (minimum order quantity). But if you order a sample piece, the price gets doubled with airshipping. And even then, it stands cheaper than on Amazon or any other similar online shopping site. I could more on this with examples, but this post will become too long. 😛☹️So basically , this was a good deal for us, as when you have a person with special needs in your home, expenses touch the sky...But God has been good to us and we are ever grateful that we can afford to buy stuff that Vineet needs all the time. My heart goes out to those parents or children who's special needs are not fulfilled...
Friends, if you support any kind of cause from your hard earned money, do give a thought to children and adults with #specialneeds . #AssistiveDevices can be ridiculously expensive for most...

And a word for those who work for changes in society for a good cause, kindly do something to bring down costs of assistive devices. Thanks🙏

And Finally, The part I LOVE the most!!
When this wheelchair moves back, it has a beep warning sound . This is very very necessary in all wheelchairs. It is dangerous for people standing behind a wheelchair if it suddenly starts to move back. Of course there is a beep horn for front on the joystick pad as well.

So here's hoping that this wheelchair comes in handy for us as we love to travel,but we don't get a chance easily😒. Lots of things to think about and loads of planning is exhausting!! 😣 But then, we might as well make the most of it while we are still able to! 😊 

Air India !! Please DO SOMETHING for YOURSELF!

September 01, 2018

Sorry everyone, this is going to be a rant post.

So we had booked #airindia flight tickets to the conference in Delhi as its getting difficult for Vineet to travel long distances in train especially due to #inaccessibility in the AC compartments of #IndianRailways. We have to carry Vin all the way to our berth, and the biggest worry? Will we find a good co-passenger who will not object to Vineet's folding wheelchair peeking out of the lower luggage place?

Will we get at least one co-passenger willing to exchange his lower berth for VINEET, in case we haven't managed to get any ? 

Or will we get some privacy while changing his diapers?
Yes, these are the kind of things we have to worry about when we travel by train 😒

I knew that #KaziNazrulIslamAirport at Andal, West Bengal is a relatively newly built airport and after it's inauguration 2 years back it was working in collaboration with #AirIndia as well as private airlines. However, due to very few passenger input it shut down last year and was re-inaugurated this year with only one Air India flight, that too once in a day, and to and fro only one destination - New Delhi . We couldn't have asked for more, it was a boon for us as well as many others who frequently visited the capital city New Delhi. It is performing very well with these clauses and there is a good crowd everyday as we discovered on our flight day later. I was worried only about one thing - whether they had #BoardingRamps or not. So I asked my friends on Facebook and also called up the Airport help desk. Friends were not so sure and the help desk person assured us that it would be no problem for a person on a wheelchair to board the airplane. So I rested assured and we got ready for our most awaited trip to New Delhi.

On 10th August we reached the Airport early morning as our flight was at 8:20 a.m. I was very impressed with the Airport building and wheelchair friendly paths. They had the #transferwheelchair which we use while the wheelchair which Vineet uses is scanned by X-ray by #armypersonnel . And they also had the #AircraftWheelchair which is used to transfer a person on a wheelchair from the entrance of the aircraft to his/her seat. Its narrow and can easily be used in the narrow aisle of an aircraft. The personal wheelchair of the #personwithdisability is taken away at the entrance and stowed at the back of the aircraft. It is brought back at the time of disembarking in a similar fashion. All this takes time and hence we are always the last to disembark from a flight. However during embarking we are first, so it's a balance 😁

Anyways, so coming back, we were the first to be taken when the flight landed from New Delhi, AND #THEREWASNOBOARDINGRAMP !! As we looked up the long flight of steps leading to the aircraft entrance where the flight steward and stewardess stood with their hands folded in typical Air India style Namaste, we wondered what to do next and so did the airport staff who had escorted Vineet's wheelchair from the building to the airplane. Here are the pics I clicked as temperature of my head soared.

Now the most important part. The attendants offered to lift Vineet up the stairs to the entrance to which he vehemently refused. To those who think it's not a big deal, TRY IT ONCE. Just try sitting on a wheelchair while 3 or 4 people take you up a flight of stairs. You feel you are in the air and if one man stumbles, the entire Entourage will get disbalanced and not only you, but all of them will get severely hurt.
IT  IS  DANGEROUS  NOT  ONLY  FOR  YOU  BUT  FOR  THE  ATTENDANTS  AS  WELL !!

So Vineet opted for his dad to take him up the stairs as he is comfortable in his arms. 

But my question to the #MinistryOfAviationIndia is this -
 What will Vineet do when his dad gets older and is no longer able to carry Vineet up the stairs? He will never be able to have confidence in being carried in his wheelchair by attendants, so will he stop travelling by air from the airports where boarding ramps are not available? It is my understanding that each airlines have their own set of boarding ramps according to the need of the place/airport.So in metropolitan cities they have plenty of boarding ramps all colored with the specific airline colors. Since this is a small airport so Air India cannot afford a Boarding ramp (as it is, it's running in huge losses and I sympathize with them. They have served us well all these years).

So I now turn to the Aviation Ministry with the suggestion that provide at least One Boarding Ramp at those airports where the Airline cannot afford. It is not for the airlines,. It is for people with disabilities like Vineet now, and for us, AND THEM, when we grow old and will need a wheelchair to visit our near and dear ones. Yes, Please Please understand that it's for Yourself as well. For your tomorrow. That time you may not be professionally capable of all that you can do today. So here's requesting those who are reading this to understand and come to our help. We are human beings. Which other species will help us if not you? I fail to understand how Air India is unable to provide a ramp when all other airlines have given up on the steep, massive, dangerously sharp-edged AND expensive stairs!!
Not to promote any airlines here, but this gentleman makes many points in this report -
https://www.forbes.com/sites/johngoglia/2013/06/16/indigo-airlines-eliminates-stairs-for-easy-airside-boarding-why-havent-other-airlines-caught-on/#208224ef2018

Thanks for going through..

Update - I shared this experience of mine upon returning from Delhi after the Conference on Facebook and tagged our Aviation Minister and our local MLA, but no response. Then I wrote an email to the Aviation Ministry, no response. 

I am not doing this for Vineet alone, it's for all who are like Vineet and also for you and me. As I mentioned in my FB post, one day we all are going to be old and some of us may need a wheelchair to visit our family in some other city or country. We may be caught in the same situation as Vineet today.  Think about it.....

Thank you 🙏

A short 'afternote' about our Europe Trip with Vineet

Phew!! Feeling quite accomplished now that I've finished documenting Vineet's trip to Europe before my memory gave way! 😜 So there were a few small things I wanted to point out to parents with a child as special as Vineet.

1. So when we came back I found that Vineet's SB site had a blister kind of thing at the bony part. Big mistake on our part - we had forgotten all about his cushion in this trip! 😱 It did not occur to us at all that his travel chair had no cushioning at all. We had carried it to Mumbai (and even left one in the hotel by mistake) but this time we forgot in the hullabaloo. So now we had to take care of this blister which ultimately burst and is now healed, Thankfully by the grace of God Almighty 🙏

2.  I don't know if we searched less or what, but it was so difficult to find a bottle of milk, just plain milk in there. They came in different forms and flavours, but never just pure milk. Quite perplexing...or maybe we didn't try to hard, eh 😏 Nevertheless, that one glass of milk daily was quite irregular for Vin and it made him weak. So if your child is having food issues, carry lots of them with you in portable forms. It would have done us well to carry small milk cartons from here. Next time! 😌

3. Lastly, while writing my posts I was also able to find a lot of exciting things about Italy - especially the " ACCESSIBLE GONDOLAS in Venice!!! I was soooo excited for Vin! They ACTUALLY have them!
Click HERE for the official link for demo videos and online official bookings and you can also contribute to them for making this thing happen!! I will be in touch with them... ☺




Have a look at this awesome video 😃



4. And it also makes me make a note about our very own First Indian Travel Company for the specially challenged - www.enabletravel.com

They also have a Facebook Page - https://www.facebook.com/EnableTravel/

I am still upset at myself  why I didn't come to know of them earlier... Nevertheless, I love their stories and their services ,and after #DeepaMalik our very own Paralympic Champion went for a Europe Trip with them , she has highly recommended their services. They are having an Offer going on at the moment on the occasion of the country's 70 years of Independence - you can nominate a friend or relative with any disability and send them on one of their #70trips without any worry at all! Isn't that a great initiative?!! We won't be able to go on another vacation so soon again 😁 but naturally, but if you want to nominate anyone , here's the  link - CLICK HERE  Those who will nominate will get a Rupees One thousand travel voucher from 'Cox and Kings".
And if you want me to nominate someone for this, please leave a mail to - spinabifidainindia@gmail.com

HURRY!!!!

Vineet's London-Europe Trip 2017 Day 10 ( Zurich)

14th June

On the streets of Zurich

So today was going to be the last day of our beautiful trip. It was a bittersweet feeling.. Part of us wanted to stay back but a greater part wanted to be back home soon with our near and dear ones. I for my part was very worried about the way Vineet looked - tanned and almost dehydrated... He had also been skipping his daily one glass of milk in the evenings as dinner was early all these days...😒
So at noon we said goodbye to our hotel in Olten and moved towards Zurich. I was not surprised when we were told that our new driver would be a lady,  coz earlier on one of our drives I had seen a girl as young as in her twentys driving a big bus as ours easily in her red cold-shoulder- top 😍My eyes had widened at her- we have yet to see something like that in our country....
However our lady driver was more experienced and must have been in her 50s (?)  and she drove very well and took us for a short tour of the city of Zurich before dropping us off for a short time near the station for lunch.We had lunch in Burger King at Zurich station and since we still had some time left, we rushed to catch a tram and go towards the lake as our Tour Manager had advised us. He even told us the Tram number ☺. The tram was very accessible and it was a wonderful ride up to where we were supposed to embark. A fellow traveller helped us as to where we should get down, and then we were supposed to walk a short distance towards the lake.

Beside Lake Zurich

 As we were walking towards it,  we saw a church ⛪ on the left hand side and walked towards it. Only to be told at the entrance that we would have to pay 5 euros for entering and a short tour!!  What the heck??!!  To pay to enter a church is the WEIRDEST thing that I've ever come across in my whole life as of now!  I don't think those guys at the counter have read the Bible wherein Jesus himself beat and drove out all those people who had made the Temple  (Church during the days of Christ) into a marketplace for their stuff. Read - JOHN 2:16 And here they were taking money to let in people?!!  I was so shocked and angry that I forgot to mention this part,  but I told them they were doing a horrible,  miserable thing. And I refused to pay them any money and walked out with a vow to report this to higher church authorities. I asked them the name of the church,  but they deliberately told me the Dutch name so I couldn't remember it (but they're wrong, I will hunt it out and make my point soon😠)

FRAUMUNSTER  CHURCH, ZURICH

Okay!! Grand update! GUESS WHAT! GOOGLE HELPED ME FIND THE NAME OF THE CHURCH - "FRAUMUNSTER  CHURCH " IN ZURICH. YES. THATS THE ONE, THOSE ARE THE PEOPLE!
 And I thought I heard them vaguely making an excuse to the extent that they needed money for the maintenance of the church as it was a heritage site (I could be wrong here, nevertheless). As far as my little knowledge goes, a heritage site is taken care of by the government. Secondly, in the Cologne Cathedral, entry was free and if anyone wanted to opt for a guided tour of the whole church right upto its highest floor, only then they needed to pay a small amount. That was so so OKAY. And THIS was NOT OKAY AT ALL!! I even felt ashamed to see a couple of Asian (maybe Chinese or Japanese) tourists paying to enter the church... 😑


Anyways, still smarting,  we moved towards the lake and what do we see on the road?  - three guys on motorised wheelchairs roaming about the streets and basically having a good time! 😊 Oh it was such a heartwarming sight....  Then there was this guy playing the bagpipe near the lake while a small boy was making huge water bubbles with the help of his grandfather. There were the words "PEACE" written on a small board behind them. And I thought what a perfect way to end our wonderful trip! PEACE!  Much needed in the world today!

So now it was time to head back to where our bus was waiting to take us to the airport. And soon it was time to say goodbye to Zurich, Switzerland. We went back the same way- via Oman Airways and Muscat. This time we didn't get Vin's wheelchair wrapped as we had learnt our hard lesson while coming. It was a good decision.

At Zurich Airport

It was a difficult journey while returning as we were already jet-lagged and spent most of the hours sleeping away and thereby missed dinner, and we didn't have time for breakfast also the next day. By late noon we reached New Delhi Airport and then rushed to catch our evening train back home. Only when we had seated ourselves comfortably in our coach that we heaved a sigh of relief. But by then Vin looked weak and dehydrated. I immediately took care of him and made him feel better as much as I could. We all longed to be in the comfort of our home and with our near and dear ones soon.
And so it happened the next morning! 😃
 NO PLACE LIKE HOME SWEET HOME !!!! 😊☺

Watch our video here -