ALS+FTD on EDARAVONE for 6months.

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Raja

New member
Joined
Aug 31, 2018
Messages
6
Reason
PALS
Diagnosis
03/2018
Country
IND
State
Kerala
City
Kerala, India, Asia
Hi friends,
I am 62, from God's own country. Diagnosed with MND-ALS+(FTD??) in March first week, this year. There is no new stories. As usual, my neurologist put me on reluzole, edaravone, methylcobalamin, alpha lipoic acid,pyridoxine hydrochloride,D3, and some other supliments . Ok. I will post more about me and my treatment tomorrow.... RajA
 

KarenNWendyn

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Joined
Jul 29, 2017
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3,762
Reason
PALS
Diagnosis
07/2017
Country
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State
OR
City
Southern Oregon
Sorry to welcome you Raja. We’ look forward to hearing more of your story and will support you as best we can.
 

KimT

Extremely helpful member
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Joined
Nov 18, 2014
Messages
4,148
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Hi Raja,

Welcome. Feel free to ask questions, vent, or do whatever you need that helps. We are here for you.
 

lgelb

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10,110
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Very sorry about your diagnosis, Raja. Do you have a caregiver? Let us know how we can help.

Best,
Laurie
 

srch1

New member
Joined
Mar 5, 2018
Messages
3
Reason
Lost a loved one
Diagnosis
09/2009
Country
Ind
State
Tamil Nadu
City
Chennai
Raja,
My mother died in 2011 with ALS. We have examples of it in my mother side ancestry. Can u share your contact email. Incidentally my mother and grandmother they have Kerala palakkad as ancestral town.Currently I reside in chennai.
 

Raja

New member
Joined
Aug 31, 2018
Messages
6
Reason
PALS
Diagnosis
03/2018
Country
IND
State
Kerala
City
Kerala, India, Asia
Hi Karen, Kim and Laura,
Thanks. Thank you for feeling my struggle and stepping forward to help me..... Raja
 

Raja

New member
Joined
Aug 31, 2018
Messages
6
Reason
PALS
Diagnosis
03/2018
Country
IND
State
Kerala
City
Kerala, India, Asia
Hi Laura,
Yes, my wife is caring me. A nurse is provided to take infusions and other things in my home. Although there is no cure as of now, quality of life has been enhanced. A driver cum servant, computer, BiPap, power wheelchair and all possible help from friends and relatives have been provided. But I know that this disease is horrendous and terminal....RajA
 

Raja

New member
Joined
Aug 31, 2018
Messages
6
Reason
PALS
Diagnosis
03/2018
Country
IND
State
Kerala
City
Kerala, India, Asia
Hi srch1,
Thanks for responding. I am very sorry to hear about your mother. I don't know this forum will allow me to share the email address. However I am providing. [Email removed for privacy and sent by mod via private messaging]
 
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Raja

New member
Joined
Aug 31, 2018
Messages
6
Reason
PALS
Diagnosis
03/2018
Country
IND
State
Kerala
City
Kerala, India, Asia
Hi ShiftKicker,
Thank you for editing and forwarding the email to srch1. ..... RajA.
 

Srch

New member
Joined
Oct 4, 2016
Messages
5
Reason
CALS
Diagnosis
01/2009
Country
IN
State
TN
City
CHennai
Dear raja,
Let god give yr wife full blessings. Your other relatives may not understand this disease. They may think that it is stroke. But this is a different beast. Don't worry about them because they don't understand. Get enough sunlight outdoors. How did you manage Kerala floods?
 

Srch

New member
Joined
Oct 4, 2016
Messages
5
Reason
CALS
Diagnosis
01/2009
Country
IN
State
TN
City
CHennai
Dear shiftkicker,
Where to search for the private message from raja
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,483
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Srch. Look near the top right. Find where it says welcome, srch. See underneath notifications. You should have at least one indicating a message.
 

Raja

New member
Joined
Aug 31, 2018
Messages
6
Reason
PALS
Diagnosis
03/2018
Country
IND
State
Kerala
City
Kerala, India, Asia
Hi srch,
Thanks for the wishes and concerns. Yes. People are not aware of this devastating disease, though Kerala
has achieved improvements in impressive health standards and material conditions of living, reflected in indicators of social development comparable to those of many developed countries. Flood isn't affected my district (Kannur). Thanks for your concern....RajA.
 
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