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LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
419
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
I just wanted to say, "Hello". My mom has just been diagnosed with ALS. She is being treated by the doctors at Columbia Hospital in Manhattan. I am new to all of this. I am just searching for some support for myself. There are says when it is so difficult to hold it together. I am depressed and know that I have to be ok because I have to do everything I can for my Mother. I am an only child and although my Mom lives with my Dad, he is not the one who can take her to the drs etc. I am just hoping to share and listen and find a group of people that know what I am going through.

Laura
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Laura,

I'm sorry that you have to be here....
This is a great forum, you will find lots of support here.
How long has it been since the start of your mom's symptoms?
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Laura. Welcome. Support is what we do best here.

AL.
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Laura! Just read your post, and am so sad to hear about your dear Mom. Am keeping you folks in my prayers. I know it's a hard journey but He will be there for you. He will not leave you alone. Feel free to ask anything, no matter what, and if we can, we will be more than glad to help you. This forum is a great forum with wonderful caring folks that will always reach out. I wish I could think of more to say, but I have been having some serious issues here lately. God is the answer! May He bless you, and keep us posted.

Irma
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
Laura,

So very sorry about your Mom!

You will find lots of info and support on this site! I hope you can find suport thru your local ALS Association!
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
City
Los Angeles
Laura, you've come to the right place. There are incredible caregivers on this forum ... I think they're superhuman, frankly. I know you wlil find the support you need. And this is the place to rant when it gets to be too much. You need to take care of yourself, too. Nobody can "hold it together" all the time.

I'm so sorry about your mom.
BethU
 

LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
419
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
My Mom has had swallowing and speech problems for the past 1 1/2 years. The drs first said it was a stroke and then things just kept getting worse. She kept choking on her food so she just wouldn't eat and then she got so bad that she ended up in the Hospital malnourished and dehydrated. I had just gotten married and feel guilty because I was not paying close enough attention to her symptoms. I knew something was wrong but she would not let me go to her dr apts with her. "Then she choked in front of me one day and I told her she didn't have a choice anymore. I told my Dad not to take her that I would do it. We found a dr (P.A.) who actually listened. After hearing that she had lost 90lbs in 6 months, he ordered tests and recommended a peg tube. But she ended up in the hospital less then a week later. She is home now, has a peg tube, can have pureed foods (not much though), just started using the forced air breathing machine. I am now working 10 hour days tues-fri so I can schedule her apts on Mondays. Thursday she called me at work in the am to say that she had blood in her urine, and it had been happening for 2 days. She didn't tell anyone. So, off to the er where they did tests and found nothing. She takes a blood thinner so they decreased it. She also has antiphospholipid antibody disorder. We think it might be a new drug they gave her at Columbia to help with the excess saliva. She told me Dad the other day that she wishes she would just die now and get it over with. I can't even relax because if I am relaxed for too long I start thinking about her and just cry. O don't know what to do. I do not like taking drugs at all but I think I might have to take an antidepressent. I can't just cry all the time. This is all so unfair. My mom was always the first to help others. Why don't they know what causes this? I am still doing research to try to understand some of it but what I am finding is that none of it makes any sense. Thanks for listening.
Laura
 

lynster

Distinguished member
Joined
Jun 12, 2008
Messages
128
Country
US
State
OR
City
Pacific Northwest
Take care of yourself

Laura,

I can relate to your problems. Please, please consider talking to a doctor about antidepressants. They can help you from wanting to go into the corner and cry for hours. You know you have things to do, and the antidepressant will help you make it through your days, and be able to do the things you have to do. They are not as good as a martini for the warm feeling, but they do their job.

So, take care of you so that you can take care of your mom.

Lynn - wife of PALS diagnosed 0808
 

thelma313

Senior member
Joined
Aug 25, 2008
Messages
888
Country
CA
State
Quebec
City
Montreal
From another daughter whose parent has ALS

Hi Laura,

I am so sorry that you have to be here. I totally sympathize. My dad was diagnosed with ALS in August and it was very very hard to accept for me. I still can't say I have acceptance but I can tell you that I understand very well what you are going through. For the first two to three weeks after the diagnosis I cried several times a day, some days I thought I would have to call in sick. I was utterly and completely haunted by the many thoughts going through my head about what my dad was going to have to go through. I also felt intense feelings of anger and felt like punching something all the time. I do feel better now. I feel like I have more courage and I am in fight mode now.

I also considered going on anti-depressants but decided against it. Of course you should do what feels right for you. My dad is on anti-depressants and it has helped a lot.

By the way, my father has the same symptoms as your mother. He has had trouble talking and swallowing since February. He has lost some weight but not very much. My mom is making him some great smoothies. If you like I could ask her for some recipes. My dad likes them and they are full of vitamins.

Take good care of yourself. It's very important and now that you are not alone! You will be in my thoughts.

Thelma
 

LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
419
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
Thank you everyone. Thelma, thanks but my Mom really can't swallow much esp liquids. I wish she could. They have scared her so much telling her that she could asperate so she is really afraid to. They tell her she can only drink with a spoon. I work in a health food store and have access to so much but I just don't know. I am going to start her on a vitamin regimin that several of my contacts have given me. Who knows, it can't hurt. Wow, I'm so happy that I found all of you. It helps just knowing that there are others who understand what we are going through.

Laura
 

givenin

Distinguished member
Joined
Jan 25, 2007
Messages
109
Reason
PALS
Country
CA
State
b.c.
City
salmon arm
Laura as you have read you are not alone it is not just our PALS who go through the levels of shock, depression, anger ect unfortunatly it is normal we all have to some extent been through it all ourselves and with our PALS. You must remember there is help for you and your parents and lots of info here. Talk to your Doctor about anti-depressents but remember what feelings you are going through are normal expescially in the begining of finding out the news.

Take care
 

Markbreton

Distinguished member
Joined
Apr 17, 2006
Messages
102
Reason
Loved one DX
Diagnosis
02/2006
Country
CA
State
Ontario
City
Smiths Falls
Hi Laura, My wife was Dx just under 3 years ago with Bulbar onset symptons. This forum has been great and honestly, has provided me with better answers then the medical community.....not knocking the medical community. I myself am on antidepressants and will be for some time and there is no shame in doing this. Things only get worse with this terrible disease and I needed the extra coping help. I'm not trying to get you down or more depressed but we all are living or supporting a loved one. Take any help you can as early as you can. Best of luck. Mark
 

LauraW

Distinguished member
Joined
Sep 27, 2008
Messages
419
Reason
CALS
Diagnosis
09/2008
Country
US
State
New York
City
Fishkill
Thank You, Mark. I did start on Lexapro. Hope it helps as I found myself wandering around the hospital on Monday because I left the paper I had written the dr's office # on at home. I went to 5 different offices before I found the right one.....that's when I knew I had to do something. All of this with Mom with me. Left the script for her brace at home too. I could only remember the guy we were supposed to see...his boss' name is Paul. Everyone looked at me like I was crazy. Then we went to mom's hemotologist and he looked at me (I had a weird bruise under my eye and am on a blood thinner) and wanted to draw bloodwork from me. I told him, No we are here for Mom but promised to go to the lab the next day. Good thing I did! I am also going back to the gym next week. Thanks again.

Laura
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
HI Laura, I really feel for you, Its like reading a book on myself when I read your post, My mom was diagnosed last October and I cried for weeks and weeks, uncontrollably sometimes. I live alone with my mother as my father passed a long time ago now. I didnt take anti depressants as I have found in the past that a good girlie night out works, I have the best group of friends in the world who i can ring or call to anytime, we just go for a drink or the cinema or anywhere really and it does help. Some nights i just sit and cry and they just hold me, it really works!
My sisters seemed to be coping so much better than me and i thought I was losing my mind, but I since discovered they were in denial and as mom got worse so did they, whereas I was holding it together. I think in the beginning I was almost grieving for my mam while she was here! In a way I was, as she is almost certainly a different person, we dont do any of the things we used to , she can barely leave the house, but we still talk and laugh a lot. And open a bottle of wine most weekends! This does help, trust me Im Irish!
Anyway hang in there, and just be there to do some of the normal things not just doctors, shopping laughing dancing if possible, they really appreciate to not feel so disabled, and they also like to think that they are not ruining their childrens lives, (something she used to say) So make sure you talk to her and have fun with her, you will be happy those times!
Take care
 

Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
Dear Laura,
We are all here for you. I am so sorry that you have to go through this. Everyone here is so wonderful. Always here for you 24/7
In friendship
Jeannie
 
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