Newly diagnosed but stuck in greece

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greekgirl

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Jun 10, 2013
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Loved one DX
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UK
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london
City
london
Hello

My fatherinlaw 65 has just been diagnosed and is living on a small greek island where medicine/resources/assistance is now to a bare minimum.

He has been prescribed Increlex but we can't get this in greece or uk. We now are not sure what to do - to keep searching for this drug or is there an alternative.

The assistance is literally ridiculous so its down to us in the UK and the internet to throw some light on what else can help him through..

His speech is slowly going and use of hands is gone.

He is having no therapy whatsoever - he has been prescribed nothing apart from the elusive increlex - so he is suffering. There are no support groups or advice lines - my father in law lives in a mountain village with no access to the internet or more to the point would not even be able to use a computer.

Please , can anyone advice us?

Many thanks
Greekgirl
 
I have never heard of increlex, and when I looked it up it was for use in short stature children...? I could be mistaken but never heard of it used for ALS.

I would not worry about that drug--you should however contact your local ALS Association and I know there are good resources in London and the UK. you might want to get him an appoint ment with a specialist there and bring him over for a visit. There is nothing that will cure or stop or slow ALS. the goal is to make him comfortable and life easy for him. there are many supplements that are available everywhere and on line that can also help. the ALS association can give you a good Idea of those.

Good luck
 
Weird that your FIL got a prescription for something he cannot get because it isn't available in his country or the other. Is it possible that the note is misread because of doc's messy handwriting?
 
Is he willing to move to be closer to family for support, or is that totally against his wishes?

Perhaps if you explain how he is suffering we can give you more specific advice. I've never heard of that drug either, so you should find out what it is intended to do.

If he's losing the ability to speak and hands, now is the time to look into other communication methods.

Definitely get in touch with the support organizations, which hopefully others can help with for UK and Greece.
 
Hi thanks for replies. I have now have his full med list: Increlex is def written in script and greek doc has asked us to track down in UK.... as its 3-6 months wait in greece. I have found some talk of use of this drug on this forum so not completely out of the blue and very odd this drug is now so hard to find too. I believe its used as a steroid for as you say short stature children and also i believe body builders have been known to use it. Greek doctor has told us today that its experimental and she has never used before for this specific treatment.

His current med list:
Rilotek x2 a day
Lopresol 1/4 of 100mg twice a day
Sintrom 1/4 twice a day
Falospiph 1 a day
Zanax 25g twice a day
Lafix 1/4 a day

He is surrounded by greek family where he is now.... just not the right medical care.

thank you for any other tips. We still can't find an association in rhodes.
 
very grateful for your posts by the way :)! X
 
It is not always easy living with ALS but being surrounded by loved ones and family can really help. I am sure you will find lots of useful tips on this forum. Best wishes
 
Sadly that's in USA he is on a Greek island called Rhodes
Thanks
 
Oh,sorry about that. I did look for greek island rhodes but could not find anything.
 
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