MND - in india and some questions

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Phonshetty

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HI everyone,

Just joined the forum about a week ago. my wife was diagnosed with MND about 4 weeks ago . If there are any Indians on this forum do let me know. also if anybody could answer a couple of my questions

1. my wife can swallow food but has trouble swallowing water and small tablets. anything I can do to help her ?

2. every night before we go to bed she complains that she is getting very less air and she is feeling that her chest is filled with sticky mucus. after some time she automatically falls asleep. the rest of the night she then sleeps comfortably. is this normal ?

3. is there anything like the structural organisation that exists in foreign countries available in India

thanks in advance
 

lgelb

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I'm very sorry about your wife and sadly welcome you.

The NGO in India is Asha Ek Hope -- they are on line.

For now, you can avoid giving her water and instead use liquids that are thicker, e.g. with egg, cornstarch, ice cream, bananas, ice, etc., always blended. Some thicker juices, coffee, tea may work as well. Depending on the tablets, many can be crushed and taken in a spoon with pudding, applesauce or ice cream. Check to make sure the tablet can be crushed first. If not, many medicines are available in liquid form, or there are often similar medications that are crushable. Let us know if you need more information on a particular drug.

Ultimately, your wife may need a feeding tube in order to continue nutrition.

Her lung function should be evaluated to see if she may need a BiPAP machine to help her breathing. But for now, using a humidifier, warm liquids/papaya or pineapple juice before bed, a taller pillow or bed wedge, etc. may help. It is also good to make sure furnace or A/C filters are clean.

Best,
Laurie
 

Phonshetty

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thanks a lot for the input
 

anxiousdaugter

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So sorry to hear about your wife’s diagnosis. My father was diagnosed with ALS last October and we live in India (Kerala). Happy to talk on phone or via email if helpful - please feel free to message me.
 

srch1

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I am from chennai India. My mother died of Al's in 2011.
 

NEILARB

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[quote
3. is there anything like the structural organisation that exists in foreign countries available in India
[/QUOTE]

[QUOTE
The NGO in India is Asha Ek Hope -- they are on line.
[/quote]

Hi,

I'll restrict my opinion to Support/Structural setup available in India for ALS based on my experience being secondary care giver, primary being my wife to her Father suffering from ALS since 3+ years now.
For what you ask - there's NONE. Asha Ek Hope may have affiliations with good foreign Care giving societies and certainly do seem to have some useful data but for what I see its a simple front to promote Stem Cell procedures. They might actually work but for all I have read or even the learned opinion in the forum is they don't.

Proper diagnosis, related counselling and self will is perhaps your major support in India. As for the first two my experience with NIMHANS Bangalore was indeed good. For second opinion have been to CMC Vellore and nothing to fault their either. Rest of the support I would say is mostly self derived and should not be difficult to find a local medical practitioner referred by the doctors in either of the hospitals i spoke of.
Cannot speak for other cities, I am based out of Pune and so far so good.

Best!
Aritro
 
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