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gbellary

New member
Joined
Jul 29, 2008
Messages
4
Reason
Loved one DX
Diagnosis
06/2008
Country
US
State
CA
City
Sunnyvale
Hi All,

I have been a silent viewer for the past 30 days or so. Let me tell you that my heart warms up while looking at the spirit of generosity that I find in these forums when it comes to giving advice and offering consolation for those who seek it. Thank you all and please keep it up!

My mom was diagnosed 2 months ago (Jun 2008) with Bulbar onset MND and so far has lost the use of her right hand. She has limited ability to use her left hand. She walks OK right now . Luckily she seems to be having a slow progression at least as of now. I live in the United States and my parents live in India. I'm planning to relocate there next year so they can move in with me.

The Doctors didn't break the news to them but instead to me when I went there on a visit. My dad is 79 years old(but luckily he is atleast 15 years younger healthwise) and my mom is 73. I did not break it to them either since for now my dad is the only care giver and I didn't want him to break down and spoil his health too worrying. But now I'm starting to think that it is better for him to know the reality as he has to deal with increasingly complicated issues in the future before I'm there dealing with them myself. I need to have the talk with him and am looking for help from those of you who have done this or if you can point to any resources which deal with how to approach this . As for medical care she is receiving good care at what is a premier medical facility in India (she is taking Riluzole).

I think my dad knows at some level that it a degenerative disease but he is the ultimate optimist (Because when he first mentioned the name of the disease over phone - I inadvertently blurted out that it is incurable before stopping myself) and we have never talked about it since and I think he is in denial. Thanks again!
 

Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
I am so sorry that you are dealing with this. I think that maybe you should talk to your dad, but I am no expert at this. You sound like a very loving daughter to relocate yourself to another country.
I hope that you are all able to get through this.
In friendship
Jeannie
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello. I am sorry to hear about your Mom. This kind of news is hard enough to cope with when everybody is in the same town! I did find some resourses for your Mom. Maybe you can contact them from over here and see what they can offer until you are able to complete your move. http://www.alsmndalliance.org/directory/india

I wish you the best of luck. Please keep in touch...Cindy
 

Vinee

New member
Joined
Jun 19, 2008
Messages
4
Reason
CALS
Country
IND
State
MAHARASTRA
City
MUMBAI
hello.my mother is also in india mumbai diagnosed als 2005june, where in india your parents are? if u dont mind.. currently my mother has lost the use of both the hands n has difficulty in walking too...
 

gbellary

New member
Joined
Jul 29, 2008
Messages
4
Reason
Loved one DX
Diagnosis
06/2008
Country
US
State
CA
City
Sunnyvale
Cindy, Jeannie - thanks for the kind words
Vinee,
I dont mind at-all - My parents stay in Mysore - She was diagnosed at NIMHANS, Bangalore . I'm so sorry to hear that your mom has lost the ability to use both her hands & has difficulty walking. That is what is so bad about this disease. It is gut wrenching to see people who were so proudly independent suddenly become dependent on others even for little things. It takes a heavy toll on their mental well being no matter how much you make it clear to them that you dont mind serving them. Do hang in there.
 

gbellary

New member
Joined
Jul 29, 2008
Messages
4
Reason
Loved one DX
Diagnosis
06/2008
Country
US
State
CA
City
Sunnyvale
Hi All,

Imagine my surprise when my dad himself broached the subject. He had had a talk with the doctors himself and they had hinted at the degenerative aspect of the disease. he admitted that he was in denial. We talked for 2 hours over the phone .... decided that the best thing to do is to keep mom comfortable and as active as possible. I can tell you one thing - I feel closer to my dad now than I have felt throughout my life! I guess God does have a purpose in all this - Atleast I have to take it that way! I'm relieved that he has confronted the nature of the disease. My mom thankfully has taken a more sanguine approach to the whole thing. You all take care!
 
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