Questions? MARYAM

[maryam_rastkar]

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hi everyone
my name is Maryam and my father's got ALS desease.
there is no cure? i am ruined.
it's 2 years that he has this problem
his muscles've become very weak.
he is a very proud man and he doesnt want to talk about his desease
so that i dont know very much about it
i wonder if its progress is this much fast in everyone?
-175cm height,49kg weight-
he's got breathing, swalloing and sleeping problems-4hrs a day-

i will be very thankful if anyone could give me some advice-any useful diet?sport? ...-

 

[Al]

Hello Maryam. I am sorry about your father. There is not really much I can tell you to help with your dad's progression. I know people that were gone in 6 or 7 months. I've been 6 years. There are so many variables with this disease and it is almost impossible to give a time line as to how fast you will progress. I wish I could be more optimistic for you. A good healthy diet and trying to maintain a good attitude are important.

AL.

 

[maryam_rastkar]

hi al
i know there is no cure , this is so painful for me to see my father dying
i cry every night and i prey for him and all those who's got the desease
thank you al

 

[tdamess]

if we can be of any help we are here even if it is just to talk...there is a thread here some where if you can find it .... i am angry... is the name and i think it helps because we see we are not alone in how we feel ...i understand your pain and being helpless in trying to fix this , no matter how hard we try and find the answer and many thoughts that may work ,you are able to find support and help in here ... wish you the best, just read , read here

 

[maryam_rastkar]

hi tdamess
as you said i feel so sad and helpless to fix the problem
it really hurts
even my prayers are going nowhere...
i AM really angry !
that would be a great help thnx a lot

 

[Vickaleesky]

Dear Maryam, I feel your pain. I have a sister-in-law with ALS. I'm a part-time caregiver for her and it's extremely difficult watching her going through the horrible effects of this disease and feeling totally helpless to 'make it all better'. I, like you, have had a lot of problems with depression, uncontrolled bouts of crying, irritability, insomnia, etc. Have you seen a doctor? You need to stay healthy for your family's sake and your own. You all need each other more than ever right now. My prayers are with you. God bless.

 

[maryam_rastkar]

hi vickaleesky
you are right , i feel totally helpless....
i havent seen a doctor yet , but you're right ,i should.
i dont wanna see my father dying,
oh God WHY?
inspite of all my prayers?

 

[cukita99]

hi maryam, i have als and my son is hurting like you. he is taking meds for depression and it hurts me to see him wasting his life taking care of me. and like it wasnt enough he had to experience my divorce too.

 

[tdamess]

maryam- please find the post ...don't focus on dying ..., it helped see it differently

 

[Vickaleesky]

Maryam, please PLEASE seek a physicians help soon. The minute my brother finally gave in to admitting he needed help for his depression I called and got him an appointment (his wife has ALS). He is now on medication that is starting to help. It can take quite a while for the medication to kick in so the sooner the better. And keep talking. I'm finding this site to be extremely helpful and healing. You can talk with people who can understand where you're coming from. I can understand you thinking that your prayers are going nowhere but if it weren't for your prayers you might not have your dad today. You and your family are in my prayers. God be with you.

 

[Vickaleesky]

Cukita99, please don't let yourself believe that your son is wasting his life by taking care of you. I'm a part-time caregiver for my sister-in-law and I want to tell you my life is enhanced ten-fold by being able to help her, and my brother. My husband & I had grand plans of traveling when we were able to take an early retirement, then this disease infected our family, and in all honestly I wouldn't trade this experience for a trip around the world. I'm a much better person today because she allows me to be a part of her life. I'm not here to say it's easy. Not at all. But if I can make her smile I'm blessed. God had plans for me when I got this early retirement and I'm here to serve...GLADLY. God be with you.

 

[joelc]

Vickaleeky, you have a great attitude - God Bless you!
It is encouraging to read your post.

 

[Vickaleesky]

Thank you for your comment Joel. I appreciate it so much more than you can imagine. I got a pretty disturbing post from a woman on my thread that has me quite upset.

 

[Vickaleesky]

I haven't seen an update from you lately Maryam. How are you?

 

[maryam_rastkar]

dear cukita99,
it is not a waste of time taking care of our parents
it's an opportunity for us to show them our real emotions
we love our parents , we dont want to see you like this