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[Johnny Boy]

Hello,
My name is John and my Mom was diagnosed 02/2011 with ALS...Im sick over this...My Mom is 65 and it is moving rapidly through her...She said today she feels like an alien has taken over her body...She cant breath right,talk right,walk right etc..4 Months ago she had drop foot but worked full time and breathing was fine...My Mom has 16 Month old twin Grandsons that are her world...I feel angry right now but most times im grateful for all the positives...Im seeing my Mom start to suffer...I feel like no one is as close to there Mom as i am " I know that's not true" and i feel like no one undersrtands "Again,also not true"...My Mom is such a HUGH part of our lives i cant imagine life without her..Why is this happening so fast ? Again,Im not the most computer savy guy but im desperate for any good news...Thank you for taking time to read this...

 

[notme]

You'll find lots of support here from very knowledgeable folks with ALS. Hopefully your mom is being seen at an ALS clinic. They can help her with breathing issues once she sees a pulmonary specialist. There are non-invasive machines she can use if her breathing is to that point. There are various types of equipment to help with mobility so she doesn't fall and get hurt such as walkers and scooters. Things that save her energy are good.

There are also support groups for those with ALS--and those that care for them. It might help you to find one in your area.

No one can really give you a prognosis on time. Some plateau and seem to stabilize with slow progression. If you have questions--just ask. Many here can give you good information.

My prayers are with you and your family.

 

[Johnny Boy]

Thank you for your reply...My Mom is now part of an ALS clynic in Philadelphia...On a bi-pap for 2 Months and i hear this disease can stableize and i dont know why my Mon is not..It seem to be very progressive...Her Dr. did say ALS can be lethal in a few Months...Is it common to be rapid and also its not bulbar which i hear can be very progressive..Sorry to sound negative but the way this is going she wont be hear much longer...Im desperate...

 

[missmineau]

John, My mom was diagnosed in the fall of last year and it was and still is devastating. Know you, and your family, are not alone on this journey, this is a great place to find lots of info and support. I find just coming in and reading others posts gives me comfort in knowing people do understand and we are never alone.

 

[Miss]

Sadly, you are never alone in this. On average, over a dozen families find out a loved one has ALS every day. I only hope that they all find the support that my husband and I have found here.

 

[joni51]

So sorry Johnny about your mama. It is so hard watching our loved ones lose piece by piece of themselves, and knowing there is nothing we can do, but love them.

 

[notgivnup]

Johnny Boy, so sorry about your Mom, Just continue to love her! As far as timeline none of us know. Just love and love some more.

 

[Chase_Corin]

My dad was diagnosed 3 days after his 65th birthday so I know what your feeling, I mean 65 is still young and he was just begining to enjoy his retirement. I get angry about the situation all of the time. It is as if he worked his whole life just to be taken down by this terrible disease.

I am 33 and not married but I still want my dad to be there to walk me down the isle whenever that might be. My brother isn't around much because of his job and I feel he is missing out on time with our dad. Dad and he share so many interests and somtimes I don't know how to relate to my own father, but he and my brother fall back into the same conversations as always when he gets home.

Anyone who is dealing with this disease feels that they are the biggest part of that person's life so don't think that it's not true Because I am sure you mean more to your mom than she would ever be able to put into words. It's okay to be angry and upset about your mom being robbed of the opertunity to get to know her grandchildren.

We are all in this together and ther people here have been really understanding and supportive of me. We are eachother's support sustem because we all know what our situation is like, of course no disease progresses the same but ask us things and I am sure somone out there will have an idea. Your not alone!

 

[Johnny Boy]

Thank you for your reply....Im so sorry your Dad and family have to go through this....Im not in denial but still at times cant believe it...My sister was at my moms this weekend and told me my mom was crying like a baby and said she don't want to be in a wheele chair and she prays to God that she'll have a heart attack...She also said she has thoughts about taking a hand full of pills but then she wouldn't go to heaven if she did that...My first thought is to want to fix it and tell her to stop saying things like that but good people i have in my life tell me its OK and nornal...My Moms a fighter and very old school...She's such a young 65...Im just sad and venting and saying thank you to all 0f you who understand....

 

[SaraKateW]

If you are looking for good news, you have this time. I'm sorry that there is nothing to offer besides that, but you DO have this time. A lot of people do not get the opportunity to tell the people they lose how much they love them, and that they would take it away from them if they could. Just keep loving her, tell her 20 times a day. I will ask, if you haven't yet, if your mom is taking an antidepressant or some anti-anxiety medicine? I would never have imagined my Mom could get through it but she did, and we found a mild mood medicine was enormously helpful, for both of us.

 

[913mommyof3]

I understand your pain and anger. My husband is 34, we have three children ages 10, 5 and 5 (twins). It isn't fair no matter how old or young you are. I have come to the conclusion that life could end for anyone, any time, despite health and age. You have to make the most of what you have left and help your mother thru this difficult time. I agree that an antidepressant would be a good idea. You are not alone. I'm praying for you and your family.

 

[Johnny Boy]

Thank you for all the feedback...I also have twins..boys,16 Months...They are my Moms world...I know i have to stay in the possitive as much as i can...Thank God my mom gets to feel what it feels like to love these baby's like she does...Im grateful to see it..We call her 20 times a day and tell her every move they make...My Mom was a single parent and this could of happened (ALS) when my sister and i were kids then where would we be without my Mom...So many things to be grateful for..She is on 2 anti-depressents and well see how she does ...My prayers go out to all of you...