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Aprilms818

New member
Joined
May 14, 2007
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1
Reason
PALS
Country
US
State
CA
City
Toluca Lake
I just found out that my Mom has ALS a few days ago. I am having a difficult time accepting the idea. I have know for many months that my Mom has had speech problems. She has been visiting many different homeopathic doctors who have been working to get the toxins out of her body. My thought this entire time is that she has toxins in her body and everything should be fine once they are gone. Her health seemed to be very affected from an accident she had at school in December 2005. She is a Junior High School Teacher. She tripped over a street curb while walking back into her school building. It was kind of slippery and icy outside. That was when her speech and hand problems were noticeably bad. When she fell she hit her head and broke her arm. Through 2006 she did a lot of physical therapy to get better but wanted to go to the Mayo Clinic. She finally got to go to the Mayo Clinic December of 2006 and January of 2007. She told me they said she had Motor Nerve Disease. I did not put 2 and 2 together. I don't know what is wrong with me. I want so bad for my Mom to be better I would do anything. I can't even believe that she is not going to get better. She and I are supposed to be hanging out when we are old ladies! I just need some support to be strong to keep helping my Mom. She is so positive! It is so awesome. My Step-Dad is a big help to her too. Anything she needs, he is there. I just needed to write and say that I am crying a lot lately. I don't feel deep down that I am handling things well yet. I am definitely grieving about being faced with the fact that I might lose my Mom. I just looked into visiting an ALS support group near where I live. They told me that it is open to anyone who wants to visit.
Thank you for having a place for me to post what I am feeling. I don't have many people to talk to right now, and I want to be the most positive I can be around my Mom.
Graciously,
April Marie Smith
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi April. We know how you feel. The support group idea is a good one. There will probably be some there that are worse than your mom. Don't let that scare you. There will also be family and caregivers for the patients. Being able to talk to people in the same situation as you may help you a lot. Here isn't a bad place for support either. There is a lot of information stored in the search feature above and just ask if you need to know something you can't find. A positive attitude helps both you and your mom. Welcome to our forum. We are sorry you had to come looking for us but glad you found us.
AL.
 

midwestgirl

Distinguished member
Joined
Feb 13, 2007
Messages
101
Reason
Loved one DX
Country
US
State
IN
City
Indianapolis
Hi April,
I am so sorry to hear about your mother. When I was first told my mother had ALS, I really didn't know alot about the disease, other than it was not a good diagnosed. After much researching on the internet I felt even worse. I sent for books from the ALS association called "Living with ALS" and felt better. Not that there is a cure YET, but there is a lot that can be done to help our loved ones have a better quality of life. I also joined my local ALS chapter and attend support group meetings, which I would highly recommend. I look forward to them each month, I think mainly just to talk with other people facing the same disease. Plus, there is always good information. Just feeling I can help in some small way, makes me feel better.

Your mom, and step dad's, positive attitude will go a long way in your mom's health. You sound like a very caring daughter, your mother is lucky to have such a supportive family.
 

paula-jane

Distinguished member
Joined
Feb 8, 2007
Messages
112
Reason
Lost a loved one
Country
CA
State
Ontario
City
Oakville
Hi April,
I'm sorry to hear that your mom has ALS. I remember the day my mum got her diagnosis.. it was only last march/07... but feels like another lifetime. I grieve everyday.. but, I am strong in her presence. Your mom will need much love and support, there will be tough days and there will be days that are better than you ever thought you could have. There are realities that must be faced as you go along the ALS path. You will be a mixed bag of emotions... and that is OK! You will make your way day by day, you will not only be encouraged by your mom's strength, but you will be amazed by the love and support you find surrounds you. You are not alone.. take it one day at a time and make the most of every day.. The people on this forum are amazing.. you will be comforted knowing that there are people going through the same tide of emotions as yourself. It has made a huge difference in my life as I struggle to cope.
Paula
 

Jamiet

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Joined
Nov 27, 2006
Messages
616
Reason
Learn about ALS
Country
US
State
Louisiana
City
Carencro
If it will make you feel better, your mom's fall, was likely caused by the ALS, you all just didn't realize it then, but in any event, we're here to support you.

This is a tough disease, so we all stick together here, through the thick and thin, and there will be both, as these are trying times and this is not easy on anyone. The best thing is to have a positive outlook.

A support group is wonderful and please ask any questions you need.


Rgds,

Jamie
 

bellard

Member
Joined
Feb 28, 2007
Messages
18
Reason
Loved one DX
Country
US
State
Arkansas
City
Fayetteville
Welcome.

Hi April,

I also found out February 2007 that mom had ALS. I live 600 miles away, and attend every support group meeting I can. I spend lots of time reading this forum, searching on the internet, reading books, discussing options with my husband and other people. Sometimes, I even have to walk away a little and re-group. I am glad your mother has a positive attitude and also has a mate to support her with close love, not to mention, a child who wants to learn and help. That seems to be 3 very big advantages for your mom.

I am very pleased to have found this forum. There are alot of great people here to support you and offer suggestions for you and your mom.

Hang tough

Bellard
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
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US
State
New England
City
Anytown
Welcome April Marie. I hope we will be able to help you cope with what is happening to your family. Cindy
 

bucky

Member
Joined
Jan 23, 2007
Messages
20
Reason
PALS
Country
US
State
Wisconsin
City
Poynette
April, I started having speech problems Jan 10, 2006. I was meeting with clients at 10 a.m. and had a funny sensation the left side of my jaw and my tongue. I went to my G.P. and he had cat scans done to see if I had a mild stroke.Then to a neuro and tests up until August when he said probable upper motor neuron disease. I then went to the University clinic and was diagnosed with Bulbar Palsy. I was officially diagnosed in Feb of this year. My speech is completely gone. Eating had become a real problem. I would cough a lot while eating and afterward as well. I had a feeding tube put in the first week in March. That solved the coughing problem. I would continue to eat soft foods and use thick it for beverages for a while but now I just rely on the feeding tube. My limbs are working fine. I know what you are going through. I have been married for 45 years to the same wonderful woman. My wife just retired from teaching three years ago. We had plans to do some traveling. This is a horrible disease. But I like to think I am living with A.L.S. not dying from A.L.S. Attitude is so important. Your mom will have to make adjustments to her life style. She obviously has a very caring family and spouse. That has helped me handle this disease. I try to maintain a positive attitude. We just got back from a weeks vacation. I have horse's and my first inclination was to sell them. But I can still take care of them and ride. They bring me a lot of pleasure so they are staying. Good luck tel your mom to hang in there. Contact me any time. Jim
 

little one

New member
Joined
May 29, 2007
Messages
2
Reason
Loved one DX
Country
CA
State
AB
City
calgary
January 07 - my world crashes...

I also found out just this year that my mom has ALS. I felt like my world crumbled around me for a little while. I was/am sad. scared....and angry. I feel it is so unfair - my mom and dad have worked hard theor whole lives and my dad was just ready to retire - my hope for them was to experince the world - travel and spend some time together as he has almost always worked away - and now this! My mom is a trooper though - sometimes a little too tough - I would like to see a little emotion from her about the way she feels but she is being the tough one because it is actually my dad that is taken her diagnosis very very poorly. He is scared. And feels badly for all the ways in which he wronged mom throughout the years. One thing is that it has brought our family incredibly close - we were not exactly the tight family that would hug and say i love you all the time and truely enjoy every single moment we spent with each other before - but I feel as though we do now. I feel fortunate that we know now and have this time to cherish with her - but I also do not look forward to what the future brings...i dont wanna see her deteriorate - she has always been tough as nails - to see her frail and weak and barely able to speak - kinda freaks me out - it is like some sort of cruel parallel universe. but alas it is my reality - I try to be tough for them but available to show my emotions just the same. I live about an hour and a half drive from them so I try to help out in any way I can and go see them often...although every few visits I have to have a little meltdown as I see the changes in her. Hoping this forum can offer some comfort - I no longer feel like the only person out there that is going through this right now .....thanks!
 

liz

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

You're right - you are not alone. We PALS and CALS can prop each other up. Welcome. There are some amazing folks here so I think you will be glad you joined.

- Liz
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Little one. Welcome to the forum. I am sorry to hear about your Mom. Write and tell us your thoughts and feelings anytime you want. People here are very supportive of one another!:smile:

One thing you mentioned is your Mom'd attitude. A lot of PALS on this fourm go through the normal stages of grief and anger but reach acceptance rather soon, considering the awfulness of this disease. And many families, like yours, are taking the opportunity to make amends and grow closer. I hope we will be able to help you and your family cope with what is happening to you. Regards, Cindy
 

paula-jane

Distinguished member
Joined
Feb 8, 2007
Messages
112
Reason
Lost a loved one
Country
CA
State
Ontario
City
Oakville
Hi Little One,
Sorry to hear about you Mom... My mum has ALS also. It's tough to figure out and accept the varying emotions (and the amount of them). Although still very much alive, you and your family with go through the grieving process in your own time and your own way.. denial through to acceptance. I have found that I am incredibly strong whilst around my mum and then I need to take a couple of hours of down time (with husband, children, friends or alone, or with a glass of wine) to "decompress" or to cry or to escape or something that helps me to make it through the rest of the day and night. You will find some way that works for you; afterall you managed to find your way to this site... that's a great step in the right direction. The people here are amazing.
take care.
 

home again

Member
Joined
Mar 18, 2007
Messages
19
Reason
CALS
Country
US
State
MI
City
Madison Heights
Hi Little One- Just moved my mother in with me this month. She was diagnosed in 08/2006. She has no speech and communication is a challenge. It seems to be the only trouble we are having right now. She gets frustrated and I think she's frustrated with me because I'm making her write everything down, but she's really frustrated with this disease taking her speech. It is difficult to watch this happening to her. I find that downtime with this forum and my soon-to-be-hubby is the best therapy. We're all here to allow you vent time. Good luck to you and your mom. Sounds like she has a good support group. Lisa
 
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