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
 
Sorry to welcome you Raja. We’ look forward to hearing more of your story and will support you as best we can.
 
Hi Raja,

Welcome. Feel free to ask questions, vent, or do whatever you need that helps. We are here for you.
 
Very sorry about your diagnosis, Raja. Do you have a caregiver? Let us know how we can help.

Best,
Laurie
 
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.
 
Hi Karen, Kim and Laura,
Thanks. Thank you for feeling my struggle and stepping forward to help me..... Raja
 
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
 
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]
 
Last edited by a moderator:
Hi ShiftKicker,
Thank you for editing and forwarding the email to srch1. ..... RajA.
 
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?
 
Dear shiftkicker,
Where to search for the private message from raja
 
Srch. Look near the top right. Find where it says welcome, srch. See underneath notifications. You should have at least one indicating a message.
 
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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