There is an article in Wired about 23AndMe’s quest for Parkinson’s.  23AndMe, as you know is a company that is decoding the human genome in search for patterns to help us understand diseases.

Parkinson’s is an incurable neurodegenerative disease that affects 1 million Americans. The biggest risk factor is age, but certain genetic mutations can increase risk too. 23andMe reports two of them to its customers, which each increase the chance of developing Parkinson’s between about 30 and 75 percent. (Sergey Brin, the Google cofounder and ex-husband of 23andMe founder and CEO Anne Wojcicki, carries one of those mutations, called LRRK2.)

But scientists don’t know how the disease works or even how much genetics play a role in its development and progression. Unlike Huntington’s or hemophilia, there’s no single genetic signal for Parkinson’s. 23andMe is betting that through brute-force pattern matching, it can map the constellation of genetic causes—and potentially inform new treatments.

To read the entire article go here.( https://www.wired.com/story/23andme-is-digging-through-your-data-for-a-parkinsons-cure/)

Joy, frustration, irritation, adjustment, finally happiness! Getting your parents to move in with you is a tough proposition. When they finally agree to move in, it requires a change in the mindset of everyone. The initial euphoria on both sides slowly moves through difficult periods of adjustment leading both sides to question the decision. But if you persevere and remain true to the reason as to why you want them to be with you, it is very rewarding in the end.  It is far more difficult for our parents to adjust since it means giving up ostensibly their independence.  Giving the limited space in our homes, it also means giving up prized possessions so as to accommodate everyone. It also meant making the home more secure, safer and comfortable for seniors.

Many conflicts arise during the initial phase – things to keep and throw away, finance, medical, the list goes on. When there are kids involved, the demands that are placed on us as parents often lead to what we perceive as interference from our parents. To them, we are still their kids who need to be spared physical and emotional demands. This often makes them intervene directly in delicate situations which make the grandchildren resent them and us. They miss their independence and their life and substitute that with trying to be a part of what happens at home. They constantly tell us when to be home, what to cook, how to buy our groceries and how to save. The conflict arises in how we raise our kids because of very different schools of thought about food, schooling and discipline.

Three generations of mood swings happen at the same time – old age, menopause and teenage. And you have to deal with the aftershocks. You navigate your way through treacherous waters filled with obstacles.

After you successfully navigate your way through these treacherous waters and lead your family successfully, it is richly rewarding to see your parents by your side through the joys and sorrows of everyday life. At the end, I am happy they are with me.

Most elderly ladies, especially in South India, have worn nothing but sarees all their lives.  While the saree is an elegant dress, it is quite a handful to drape, even for a normal person.  But to have to drape it on another person, that too someone who is confined to their bed is not only tedious but also difficult to manage for multiple reasons.  Just imagine having to change the saree every time there is a diaper ‘accident’ and you will understand some of the problems faced in such situations.

One such story involves an 89-year-old lady. This lady had been very active until she fell and fractured her hip a few months ago.  One thing led to another and now she is confined to her bed, and dependent on her daughter for everything.  A feisty lady, the perceived loss of control of the household and having to depend on others made her very difficult to deal with.

One of the things she refused to compromise on, in the beginning, was the saree.  She insisted that she had to be in a saree all the time.  And not just any kind of saree but one of the starched and iron cotton ones that she was used to all her life.  The daughter tried gamely for a few days but was unable to take on the additional burden of changing her mother’s saree two or three times a day.

She then bought nightgowns from us, but her mother refused to even consider them, even after she was given a wide choice of designs to choose from.  Finally, the mother and daughter had a big showdown at which time, the daughter reduced the choices to grey hospital gowns and our special design Cocoon nightgowns.  The mother finally relented and decided to go with the nightgowns, for she abhorred the dowdy hospital gowns, which she felt made her look and feel even sicker than she actually was.  Needless to say, the mood in the house subsequently went downhill.

We came to hear about this story when the daughter, the primary caregiver came to buy some more of our specially designed back-open nightgowns for her mother.

With dark circles around her eyes, hunched shoulders and a resigned look, she appeared to be at the end of her tether.  On gentle probing, she confided that she felt that she had let her mother down as she could not even meet the simplest of her wishes.

Once she narrated her story, we took a leaf out of another customer’ story (similar beginning, but a different ending), and suggested the following:

1. Have specific visiting hours for her mother during which time her friends and relatives can come and visit her.

2. Get the mother dressed in a saree for the those visiting hours, so she can receive her visitors the way that she liked – prim and proper in a starched cotton saree.

A few weeks later, the daughter came back for a few more of our nightgowns.  She seemed to be in a much better mood and was happy to share with us that our suggestion had worked very well and both mother and daughter were very pleased with the arrangement.

“Now that my mother has got used to wearing nightgowns, she finds them very comfortable and elegant.  She has sent me here to get some more, with clear instructions to get pastel shades because that is what complements her complexion”, she said with a throaty laugh.

On our part, we are very happy to have contributed in making the life of another care recipient and that of the care giver just a little bit better.

I recently took my mother-in-law to Mumbai for a family wedding. While she can walk a bit, she finds standing for extended periods and walking long distances very painful, so I ordered wheelchair support for her at the time of check-in.

The Indigo airlines people (MAA-BOM) were very kind and helpful. They came and found us even before we reached the check-in counter and got her comfortably seated in a wheelchair. They then took her through security and ensured that she reached the gate well before flight time. They then came back at the time of boarding and made sure she got on to the plane before anyone else and was seated comfortably before the rest boarded.

Similarly at the Mumbai airport, after everyone had disembarked, they brought a wheelchair through the aerobridge and remained with us till we got into a pre-paid taxi. The person manning the wheelchair even took her to a disabled toilet before we got into the cab. He remained patient, courteous and kind throughout.

Our return was by Jet airways. The embarking process went smoothly with the wheelchair available to my mother-in-law from the airport entrance itself all the way to the aircraft. I was extremely happy with the service and it made my mother-in-law’s travel much less of an ordeal than it could have been without the wheelchair support provided by the two airlines.

At the Chennai airport, after the flight landed, we waited for everyone to disembark and then started to move forward towards the aerobridge when a flight attendant announced that wheelchair users should use the rear exit. We turned around and went there only to find a flight of steps down (no aero bridge). When we protested, they said please get down the steps and we will get you a wheelchair. So we helped her get down the steep stairs which she managed with a lot of difficulty. At the bottom, they said, please get into the bus and we will get you a wheelchair at the terminal. It was just another 20 meters and she was game, so we did not think too much about it. However, getting into the bus was something else! The first step of the bus is a good foot above the ground and she really found it difficult to climb in. Finally, my wife and I literally lifted her on to the bus while the ground crew stood around watching.

Not surprisingly, at the terminal end, there was no wheelchair waiting for us. We got her down from the bus and started making our way towards the baggage carousel. Just as we were almost at the carousel, the wheelchair finally arrived. As a saving grace, the attender stayed with us all the way to the pickup location a good 200 meters from the arrival hall.

When it comes to accessibility services, we are almost there, but not quite yet. The strength of a chain is that of the weakest link. Similarly, the final quality of the service depends not so much on the parts that you do well, but on the places where you drop the ball. In this case, the disembarkation process at the Chennai airport was a disaster in terms of service. Jet airways needs to take note and improve on their service.

I will be writing to them about this so they can really consistently do their job well. If you have a similar experience, please make sure you write to the concerned authorities so that they can improve upon their services. If we don’t tell them, how will they know they need to improve?