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samava

New member
Joined
May 9, 2007
Messages
2
Reason
PALS
State
Gauteng
City
Johannesburg
My father in law was diagnosed in December 2006, but started showing symptons in July last year (was dragging his one leg). Now he has lost the use of his legs, and his one arm is starting to go.
Big problem - we live in South Africa, so feel really helpless.
From conversations recently it sounds as though my father in law has realised what is going to happen to him, and he is very angry at the moment (100% understandable).
We really want to buy them a computer with skype so at least he'll be able to see us, and he can learn to surf the net, and communicate if his vocal chords go while he still has some movement in his arms.
The big problems are:
1. I need to find a hospice or caregivers group with volunteers who can go round and help him, while at the same time give my mom in law a break - can you put me in touch with an organisation in France?
2. What can we do to assist him, being so far away? We've suggested they come here on an extended holiday while he can still breathe without assistance. The change of scenery could help? Also we can spend some quality time with them. Is this a good idea? Please could someone give me ideas of how we can help.
Many thanks
Jan
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Jan, my opinion is to get your dad to visit asap. I really wanted to visit my son's family in the Philippines one more time but left it until it was too late because of breathing issues. I really regret that. I'll look around and see if I can find any organizations in France. Welcome to the forum. Glad you found us but sorry for your dad's diagnosis.
AL.
 

Echam

New member
Joined
Jun 9, 2007
Messages
2
Reason
PALS
Country
FR
State
France
City
Paris
Hello.

First, I'd like to say how much I appreciate this forum. Even though I haven't registered as a member before now, I've been keeping a regular eye on the site for some time and I think you've created something really special for people going through this terrible experience, wherever in the world they may be.

I decided to register with the forum today because as I live in France, and have ALS, I'm probably in a better position than most to respond to this question. I you realise your original request dates from the 10th of May so I hope you have managed to find some information since then, but if not…

The link Al gave you could be useful. The ARS can send out printed information sheets and, depending where your in laws live, they may have a volunteer who can make house calls to give moral support. And they should have good practical advice to give, maybe equipment to lend out.

In France it's important to know that everything concerning disability goes through the "Maison départementale des personnes handicapées" or MDPH. I think it's normally necessary to approach them on referral from either the hospital or the GP, especially if you're hoping to qualify for subsidised home care or financial help in making home modifications. There's a lot of paperwork involved of course and it takes some time, but I think that cases of ALS are fast tracked compared to other disabilities. In the meantime, the MDPH should be able to give a list of companies in the area that provide 'home help' services, which would give your mother-in-law some assistance with difficult tasks or a break when things get really difficult. It's also worth starting to apply now for the “carte d’invalidité” as once you get classified as 80% disabled you qualify for tax reductions.

There is also some useful information (in French) about the MDPH on this website for MS in the "infos sociales" section:
http://www.nafsep.org/

I hope this information is of help. From what I understand, your in-laws don't have Internet access for the moment. If it would help, I would be happy to give you my phone number so that they could contact me in person if they would like to talk.

Good luck with everything. I hope you manage to organise a visit from your in-laws before things become too complicated/tiring. Let me know if you need any more specific information about the French system and I'll see what I can find.

Esther
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Thank you Esther for joining and sharing information with us. We try to help as many people as we can but sometimes unless you are in a specific country the rules are different and it sure helps to have members willing to share. Welcome.
AL.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Al -

Your resourcefulness never ceases to amaze.

Liz
 

samava

New member
Joined
May 9, 2007
Messages
2
Reason
PALS
State
Gauteng
City
Johannesburg
Hi Esther
Just managed to negotiate the site, and saw your previous messages to me - you are an angel!
Have you got people around you to help you?
Anything I can do over the internet - please feel free to ask.
Many thanks
Jan
 

Echam

New member
Joined
Jun 9, 2007
Messages
2
Reason
PALS
Country
FR
State
France
City
Paris
Hello Jan,
I'm glad you've found the information now. Let me know if you need any more details.
Doing paperwork is not a strong point of mine, but I've been greatly helped by social workers and other people I've been in contact with, so I know how some of the administrative things work over here.
I live alone so I am really dependent on outside help and I have people come in three times a day now to give me a hand with just about everything. I'm fortunate that I'm still able to work, part-time at least, thanks to Internet and the telephone. And my friends are being absolutely fantastic, dropping by to see me whenever they can, or arranging to meet up at my place rather than going out to a bar - sometimes, anyway - I don't stock quite such a large range of drinks as they might get elsewhere, the table service is non-existent, and I live in a quiet suburb of Paris with no exotic views of the Eiffel Tower or the Seine…
Which part of France do your in-laws live in, by the way?
Esther
 
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