Status
Not open for further replies.

sacchick

New member
Joined
Feb 5, 2007
Messages
4
Reason
Loved one DX
Country
US
State
California
City
North Highlands
Hi All,

I just found this website and am hoping it might offer some support. On Friday, January 26th my mom was formally diagnosed with ALS by her neurologist. She will be 57 on Sunday. It took her a long time to tell us what was going on with her (she is in Eureka and my sister and I are in the Sacramento area). She started having problems in July of last year and thought she had a small stroke or something like that. So she told us not to worry about her, that she was going to physical therapy and was feeling better. Around thanksgiving she emailed us (I think she was too self conscious about her speech at that point) and gave us little indicators that maybe something else was going on. Since then she has lost most of the function in her right had and has had to adapt to becoming a "lefty". My sister and I had planned to go up to see her before xmas, but complications came up and we had to postpone our visit. We planned it for January 26-January 29....it just happened to be when she found out the diagnosis. So she was having a rough weekend already and then the stress of us coming to see her (I think she was really worried about what we would think when we came to see her). It was a really tough weekend for everyone (I'm just thankful that her long-time boyfriend is there to help her and care for her). I'm not exactly sure what I'm looking for here, I just thought it might help to talk to people that are familiar with the illness and may offer some insight and support. Thanks for taking the time to read this.:)
 

hkohlman

Active member
Joined
Jan 2, 2007
Messages
42
Country
US
State
Montana
City
Billings
Hi

Hi sacchick, First welcome to the group. I have a dad who has ALS his started out just like your mom. We all know that this is very hard to cope with but taking it day by day helps. This formum is sometimes the only thing that keeps me going. I can vent at any time of the day or night! Just remember to keep your chin up! It helps sometimes.

Feel free to contact me anytime!

Heather:)
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi sacchick. Welcome to the forum. Feel free to jump in with questions, opinions or just to vent your feelings. This is a very difficult disease and we are here for support.
AL.
 

sacchick

New member
Joined
Feb 5, 2007
Messages
4
Reason
Loved one DX
Country
US
State
California
City
North Highlands
Thank you, I appreciate your reply. On Monday, Feb. 5th my sister and I got a call from my mom's long-time boyfriend that we needed to get up there. So we made the 6 hour drive that night, got there at 1:30am and my mom passed away at 5:30am. I don't know that this has really sunk in yet, this disease took her down and out in less than 7 months. I just know that she is in a better place now and is no longer suffering.
 

ChrissyWho

Member
Joined
Apr 24, 2006
Messages
21
Reason
Loved one DX
Diagnosis
03/2006
Country
US
State
California
City
Moreno Valley
Im so sorry for your loss. I lost my husband a week before Christmas. This is a terrible disease. I'll keep you in my prayers.

Chris
 

sara06

Member
Joined
Aug 9, 2006
Messages
29
Country
Ottawa
State
Michigan
City
Jenison
Oh my goodness honey, you and your family are in my prayers! I'm so sorry for your loss, and I hate to sound cliche, but I kind of understand what you are going through. My mom passed in October '06, 10 months after her diagnosis and I feel like it's just now catching up to me. Remember she is not in pain anymore and that someday you'll see her beautiful face agian!

God Bless you,
Sara
 

sharonm25

Member
Joined
Sep 14, 2006
Messages
11
Reason
PALS
Country
US
State
Florida
City
Gainesville
I can truly understand how you feel. My Mom began having symptoms in March 2006 and was diagnosed with early symptoms of limb onset ALS in July 06. She passed away on December 10 2006 just 5 short months after her DX. It seems like we were just adapting to one aspect of the disease before she began experiencing another. We did not expect her to decline so rapidly. While we miss her so very much, the only thing that keeps us going is knowing that she does not have to suffer with this horrible disease any longer and that she is now with rejoicing with the Lord. My thoughts and prayers are with you.

Sharon
 

Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
sacchick

I am very sorry for your loss, may God be with you and your sister, and just think that your mother is resting on a much better place next to Our Lord; and that he was gracious with her and took her and she will not suffer anymore with this terrible sickness.

Sincerely,

Paty
Husband's Caregiver
Baja California, Mexico
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Sacchick. I am so sorry about your mom. When you joined here one week ago none of us thought that this would happen so suddenly. Be thankful you got to spend a bit of time with her before she went. As I said before we are here for support and if you need anything or any questions answered just ask.
AL.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Sacchick -

What a shock this must be for your family. I'm very sorry for your loss.

Liz
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hello Sacchick, We hardly got a chance to meet you and now it is time to offer condolences. Your family must be reeling. Please feel free to write and vent or let us know how you are feeling. It is never easy to grieve someone you love but you are not alone. Cindy
 

Gmansdaughter

New member
Joined
Feb 13, 2007
Messages
3
Reason
Loved one DX
Country
CA
State
Ontario
City
Markham
My thoughts are with you

I can only say how sorry I am for your loss. If you need anything please write.

Thinking of you,

Kim
 

hkohlman

Active member
Joined
Jan 2, 2007
Messages
42
Country
US
State
Montana
City
Billings
sorry for your loss

Hi Sacchick, I was sorry to hear about your mom.I hope you are all hanging in there during this tough time. I will keep you in my prayers. God Bless. Heather

Ps. Have a good 31st Birthday on Friday!

PSS. Happy valentines day to everyone!
 

sonofals

New member
Joined
Feb 9, 2009
Messages
1
Reason
Loved one DX
Diagnosis
02/2009
Country
US
State
il
City
plainfield
my mother was just diagnosed with als this past week. She had been having a hard time talking as well. She is now having a hard time swallowing. She stayed in bed all day yesterday ,was very week. We just dont know what to expect.
 

nspoc

Distinguished member
Joined
Mar 24, 2007
Messages
113
Reason
CALS
Country
US
State
Illinois
City
Olympia Fields
Hi Sonofals -

Sorry for what you are going through. Don't know what hospital/clinic you are using - but I would call the Les Turner ALS Association - look them up at www.lesturnerals.org. They are a huge and unusual resource unique to the Chicago area.

They have all kinds of resources to help you - including nurses who make home visits to assess your needs and make recommendations. They were a lifesaver to us. They will work with you no matter were you get your care. They will also work with/educate anybody who works with you, such as ocupational, physical or respiratory therapy.

They have a loan closet with speech equipment, as well as all kinds of other helpful things. They also have equipment grants that are available.

What does the future hold? These people are the best resources for helping you understand that, or for coping with whatever comes your way.

Please keep in contact with this forum - it has helped me a lot. Also - I live in the Chicago area, as do you - you cannot yet private message me, but I will try to help in any way I can.

I wish you the best. We are all going through this together - and believe me, that has been a source of huge comfort to me.

Beth
 
Status
Not open for further replies.
Top