Do visit the site!

Have just discovered another site that helps caregivers and stroke survivors with forums and handbooks for everyone to post their experiences.

Here is an excerpt from their ‘About Us’ page with (hopefully) a link. If I’ve been able to put this in correctly.

“The Stroke Network provides on-line support to stroke survivors and stroke caregivers of adult stroke. We have found that a stroke caregiver or another member of the stroke family will seek out a web site looking for information about stroke after their loved one has just had one. They will perform a search in one of the major Search Engines, ie Google, and then click on our homepage at http://www.strokenetwork.org/

Not only do we have dozens of resources for stroke survivors but we also have many resources for the stroke caregiver.

On the one hand, the stroke survivor is usually looking for information about stroke or is trying to connect with other stroke survivors. Many stroke survivors are released from their rehabilitation hospital and then might not have a local stroke support group, transportation to the group, conflicts with the meeting schedule or might have emotional lability so bad that they cannot bear the thought of being around others.

On the other hand, the stroke caregiver needs information and lots of it.  Stroke caregivers are faced with a multitude of decisions.  Many stroke caregivers are totally stressed out between having to make immediate decisions,  searching for information and then needing a medium to vent, rant, rave and to ask practical questions.

Our support services include daily chat sessions, instant messages, email, blogs and a message board with several forums relating to topics important to stroke survivors and stroke caregivers.  Full benefits are displayed in the Member Area.  Our information resources include a monthly newsletter, book shop, articles, links, webcasts and a Stroke Caregiver Handbook that our experienced stroke caregiver members have written for the new stroke caregiver.

There are many more features to our site. Our forums are available to anybody with a computer but may not be able to make it to a real life support group. We use the net to connect with others, however we can.

So who are we? We are people from around the world who have survived a stroke that want to do something for our stroke brethren. We know that they cannot obtain the stroke support locally so we are here for them on-line.”

There are physiotherapists and there are physiotherapists; and as the Bard in his wisdom once said, “a rose by any other name would smell as sweet”. While I agree in principle with the spirit of this declaration I do have differences with it in one regard, namely one cannot generalise. I say this with special reference to physiotherapists. I have by now been treated almost continuously by physiotherapists since early 2007 and can safely claim to be something of an authority on them.

Therefore, I beg to differ with the bard insofar as physiotherapists are concerned. They are not all the same. They may all have the same or similar qualifications but each one differs from the other and not only because they are individuals but also in their approach to treatment, behaviour and consequently results.

I have come across physiotherapists who consider their duty adequately performed if they are regular and punctual without paying any heed to the varying needs of their patients and with no evaluation of the results obtained. I remember one physiotherapist who would ask me to repeat exercises in exactly the same way as I had done previously with no thought whatsoever about the effect these exercises had on me or about any improvements – or lack of – that were achieved.

We must remember that ‘physiotherapy’ is a branch of medical treatment that relies heavily on the effort and commitment of both the patient and the practitioner. I dare say that this is also true of other branches of medicine but probably more so in this case, where the treatment operates jointly on the physical and mental level.

The inadequacies of my earlier physiotherapists became more apparent to me when I started treatment with my latest therapist. For the sake of convenience and anonymity I shall refer to her as “N.S.”

N.S. is a young slim and tall girl whose slender build belies her strength and it is this that separates her from run of the mill physiotherapists. This strength is not just a physical attribute but one that also aplies to her mind. Other features that distinguish her are:

• She extracts feedback from me on a regular basis
• Every day before she starts she asks me to demonstrate the exercises I have done on my own time – this keeps me on my toes
• She maintains a continuous flow of feedback to me on my performance and makes immediate corrections when I make mistakes
• She thinks beyond the day’s exercises and relates these, with my performance, to my daily life so that improvements are achieved. In other words her treatment is not isolated and removed from the everyday
• In addition she is lavish in giving positive and negative points where deserved
• She has a sense of humour which lightens the mood and makes the exercise a fun thing.

Thanks to her in the past several months my ability to walk has improved considerably and I have learnt to walk on different surfaces, including grass.

“Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning’s hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and cry,
I am not there; I did not die.”
Mary Elizabeth Frye

Last year on April 9th, 2008, my sister Vinita Shivdasani nee Singha died. She went in for a minor surgery for gallstones and after, what was claimed to be a successful minor operation, her heart collapsed. SMS messages flew back and forth: ‘her heart is beating with meds’ ‘we are waiting and watching, pray’; the usual. But, it seemed the Lord had need of her. And before we knew it, it was over, her work here was finished.

She was our mischievous one, our little rebel, the butt of a lot of teasing and jokes,pranks we’ve never forgotten. The stories are legion and would provide material for another post altogether.  What was amazing and heartwarming for us, her family and friends who knew her from her childhood and through her rebellious years, was to learn at her funeral service how she’d grown both in her faith, maturity and kindness. The number of people she had helped and comforted, encouraged and stood by in Kolkata (Calcutta). How active a church member she had been. Hearing all this made us proud to say, “this was my sister”.

For those of us who look for signs; something interesting and very encouraging happened at the funeral service. During the speeches and prayers, through the tears and memories, the church was filled with a number of butterflies and one kept hovering around my brother-in-law. As the coffin was carried out, and we followed it up the aisle and through the door, that butterfly alighted several times on his shoulder and flew out into the churchyard with him.

This year, we had a memorial service at her grave. The poem above was engraved in its entirety on the deep grey granite stone on her grave. There was a ceremony arranged by her husband, Mohan and two sons, Aakash and Varun.  It was a befitting memorial to a person who had lighted upon the earth as a blithe spirit and left it, much like a butterfly. And like that lovely creature, she brought joy and smiles, laughter and hope to so many. And just how many, we learnt at her funeral and again this year at the graveyeard on April 9th. And once again, one butterfly from many in that green cemetery, chose to come and hover over the grave and around the flowers, it stayed while others came and went.

I like to believe it was a messenger to tell us that she was somewhere spreading joy and happiness, and like the poem that she was in the gentle wind that stirred the green leaves in the cemetery.

Here are some thoughts, some light, some not so light. Please feel free to add your own.

• Politeness and manners should never be mistaken for weakness
• Why be difficult, when with a little more effort, you can be impossible
• Loud and abrasive behaviour is not a sign of strength
• A doctor with an iota of compassion is a rare find and worth his weight in gold
• Greed is an offspring of one’s upbringing
• The family is one’s only last bastion
• Repay malice with kindness, it confuses everyone
• A mother-in-law is also a relative
• Information is power
• A friend is someone who accepts you on an as-is-where-is basis and doesn’t try to change you
• Work is a four-letter word and should be removed from a child’s vocabulary
• Bravery is not the absence of fear – that is stupidity
• Education increases one’s capacity to look beyond oneself
• Christmas while being the season of joy contains within it the seeds of Good Friday
• The million dollar question should be ‘is there life after birth?’
• A chameleon doesn’t change its colour, it only does so to blend in with its surroundings
• The only thing regal about a lion is his inertia

This is a short story, but I hope it will have a big impact. Obama said, “Yes, you can” and if any one person, that I know has followed that dictum, it is Mike Austin, once a talented art director and a well-loved, much admired, and highly awarded art director. And he followed the spirit of “Yes, you can,” long before Obama was heard of by the world at large and well before his famous slogan became the battle cry that called a vast majority of Americans to seek change.

Mike andLesley, his wife, have fought a battle against all odds and they are finally, I believe and hope, climbing out of the very depths of despair. Honestly, I don’t know how they’ve done it. Where they found the strength, the will and the ability to persevere.

Although this post, isn’t the one in which I will delve into the sad story of how poorly Mike was treated by the advertising agency he worked for in Bahrain, I may well add it as another story some day.

Mike had a massive stroke, the year before I did. The fallout was incapacity, especially in his ability to speak, I understand that the term for this is aphasia.

However, perhaps in his desire to communicate, or his innate artistic instinct, whichever it was, he decided to re-learn how to draw, and how to use his computer again. He still cannot talk as clearly as he once could, but he does understand what people say. He has a beautiful voice and when he’s at a loss for words, the one word he resorts to is, ‘fantastic’.

That’s Mike. And that’s his work too. To see his work visit  http://mikeaustin.carbonmade.com/

He is keen on getting meaningful, remunerative work. So, if anyone visiting this site has a job for Mike Austin, please leave a comment here and I will forward it to him.

A compound found in soya beans and chickpeas could help stroke patients, research suggests.

A study into a dietary supplement containing isoflavone found it improved artery function in stroke patients.

Heart disease patients who had suffered a stroke caused by a blood clot were split into two groups, with one given isoflavone and the other a placebo.

Researchers measured the way the main artery in the arm dilated following an increase in blood flow, known as flow-mediated dilation (FMD). The greater the FMD, the better the artery is working.

The results showed the level of poor FMD was similar between the groups at the start, but after 12 weeks the FMD was ‘significantly greater’ in those taking isoflavone.

When reading this article in the health section of the Mail Online – http://www.dailymail.co.uk – I noticed that some commentators suggested that this was due to the ‘oestrogen effect’ in the soya/ chickpeas. Others reminded readers of the side-effects of increased stomach gases. However, I think an occasional – even weekly – dish of chickpeas, especially with chapattis and prepared Indian style may not be a bad idea. Anything to help improve circulation would surely be a good. Of course regularly trying to get up and get moving would be beneficial.

TED talk – brain scientist describes the journey of her own stroke ! This is an incredible story and for anyone who hasn’t seen it or read it, it’s an eye-opener.

Jill Bolte Taylor got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions — motion, speech, self-awareness — shut down one by one. An astonishing story. TED has so many inspiring talks on different subjects.

Here’s the link: http://www.ted.com/index.php/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

I hope our visitors will find this useful.

Ten Tips for Caregivers to Stroke Survivors
If your loved one just had a stroke, you (or a relative) will face the scary prospect of starting your on-the-job training as a new caregiver when he or she comes home from the hospital or stroke rehab center. It will be a long road filled with….
http://www.associatedcontent.comarticle/204495/ten_tips_for_caregivers_to_stroke_survivors.html

When things go wrong, as they sometimes will,
When the road you’re trudging seems all uphill,
When the funds are low and the debts are high,
And you want to smile, but you have to sigh,
When care is pressing you down a bit
Rest if you must, but don’t you quit.

Life is queer with its twists and its turns,
As everyone of us sometimes learns,
And many a failure turns about
When they might have won, had they stuck it out.
Don’t give up though the pace seems slow,
You may succeed with another blow.

Often the struggler has given up
When he might have captured the victor’s cup;
And he learned too late when the night came down,
How close he was to the golden crown.

Success is failure turned inside out
The silver tint of the clouds of doubt
And you never can tell how close you are,
It may be near when it seems so far;
So stick to the fight when you’re hardest hit,
It’s when things seem worst that you mustn’t quit!

Taken from encouragement poems

http://www.poem4today.com

The problem with the “rat race” that we all run today is that even if you do emerge a winner, you are still a rat which (with due apologies to the bard) by whatever name you give it, smells just as foul.

I find the above parody on the old quotation, which I unlocked from the vaults of my memory bank, to be tailor made to suit the situation of the stroke victim trying his damndest to travel the road to recovery. Lacks motivation? Sure! But whoever said that providing motivation to recover was part of the deal.

Brother you locate or create your own motivation. No outsider can provide it because no outsider can put himself in your shoes. Yes, you sail along the road or river to recovery on the strength of your breeze or wind.

How you create it is entirely up to you. Today I cannot provide tips to that. And speaking of motivation, the worst is the time you find yourself sitting alone in chasms and ravines of depression. These divots are so large they would make the Grand Canyon appear small and insignificant. No ropes! No grapple hooks! No, sadly there’s nothing at hand to help you climb out of these depths.

But then who said this was going to be a joy ride. “Joy”, I haven’t seen that bird in quite a while;  I have even forgotten what it looks like.

My sister, Vinita, died on the 9^th of April 2008. She was the youngest of us three siblings. I was told that she had gone in for a minor operation and that while she was on the operating table her heart forgot to do what it was supposed to. She was three years younger than I and she died. I reckon she was the lucky one.

Do I sound depressed? Life in a canyon can get quite tiresome. I used to be quite gregarious prior to the stroke. I enjoyed the company of friends and acquaintances and I think they enjoyed my company.

My social behaviour used to be described as  - gay (not in the modern sense of the word) happy go lucky. I was considered to be humourous and very witty. Of course, all that is a feature of the past, best forgotten and swept under the carpet or whatever.

Nowadays, the behaviour of others towards me at social gatherings is deferential, with a lot of concern, there is a strong hint of being condescending even, patronizing and I hate it with a gusto! Meeting people for the first time used to be a joyful adventure, one to be looked forward to with anticipation. This joy and fervour has now changed to apprehensive concern, bordering on naked fear.

Yes, I’ve changed considerably.

I have sometimes thought of taking up teaching assignments in training institutes near where I live. But then the thought of how the students might view a doddering, shuffling, octogenarian. And the fact that I would be providing a laugh to them with a target for ridicule and derision has quickly put an end to such ridiculous unrealistic aspirations, of an ancient wreck who is half lame, half blind with hardly any speech.