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Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
Hi I am my husband caregiver, he was diagnosed Oct. 2005, symptoms started on June, he started with his left leg and left hand and arm, one year away he can't do a thing on his own, his arms are useless, his speech started to deteriorate about two month's ago, but is still understandable.

I think the course of ALS has gone to fast, since I think this is not Bulbar ALS, he can eat very well and doesn't have trouble breathing.

I found this forums a few month's ago, but since I am from Mexico, and leave on the border of U.S.A. was a little afraid of not being able to make myself understood.

I just wanted everyone to know that this is a wonderful place to find comfort for what I am going through, I come whenever I have a little time, since this is the only place were I don't feel lonely.

Thank You AL for your welcome message; finally I came through AL


Paty
 

COlisa

Distinguished member
Joined
Feb 21, 2006
Messages
120
Hi Paty,
Welcome. This is a wonderful group. Don't ever hesitate to post with questions or even if you just need to have a place to pour out your feelings. I have found everyone to be so supportive.

My husband has been diagnosed with bulbar palsy, so he does not have limb weakness yet. Symptoms first appeared around June-July 2005 and 1st diagnosis was in Feb 2006 He does not have trouble eating, but his speech is slurred and a bit hard to understand sometimes and has some trouble drinking water & other thin liquids. We have been told that progression is usually rapid, but fortunately his symptoms seem to progress slowly so far.

I don't know what else to tell you other than "know that you are not alone". Now that you have posted, I know that many of us will think of you often & send good thoughts and wishes to you and your family.

All the best,
Lisa
 

Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
Thank you very much Colisa

Thanks Colisa, I know I got to the right place, people are so warm here.

Paty
 

ekoozmin

Active member
Joined
Feb 24, 2006
Messages
46
Hi Paty--Welcome to the board. Glad you decided to post. Please don't feel too self-conscious, we all find ways to understand each other--especially when someone needs help. My father has ALS and also declined very quickly. Your husband is very lucky to have you--a caring wife, looking after him.

Have you found good doctors, therapists, and people to help you in Mexico? Is there something like the Muscular Dystrophy Association or the ALS Association, like we have in the States? If you need help with this, let us know and we can help you find out.

Take care of yourself!

Liz
 

Paty

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

Hi Liz:

Yes there is an Asociation for people with Motor Neuron Disease, ALS, etc. but this are located in Mexico's Central States, not here in Baja California, were we live, so we must go to San Diego, Ca. which is only two hours away or Phoenix, Az.

But we do have very good doctor's and therapist here in town, my son and daughter in-law are doctors, she's a Pediatrician and my son finished his Residence as Surgeon General last Feb., and now he's doing Advanced Laparoscopy and Bariatric Surgery.

My husband and I have been married for 35 years, he's going to be 57 yrs. old on Sept.,
he was a Duster Pilot for 23 yrs, and after that he started a Commercial Flying School, but a little after that his symptoms appeared and had to give it up.

How old is your dad? Are you his only caregiver, I am for my husband, since neither my son or daughter can help me, she's an Electronic's Engineer and works for a U.S. company here in town, and married five month's ago.

My husband's mother visits us every Saturday, but she's a sweet old lady 83 yrs. old.
I appreciate very much her visits.

Well again thank you for your welcome.

Paty
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Paty. You are doing very well at making yourself understood. Do not worry about silly things like that. We are all friends here. We help as best we can. Take care. AL.
 

Paty

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

Thank you again Al.

Paty


By the way Al, I made an avatar for Ruby Ben, sent her a private message, but guess she hasn't read it yet.

I will wait to see if she sends me an e.mail so that I can have her e.mail address and send this avatar.
 

ekoozmin

Active member
Joined
Feb 24, 2006
Messages
46
Hi Paty--My father is 76. He was diagnosed in Jan. 2005. He and my mother were married for 44 years and she died seven years ago. He remarried a younger woman who does not get along with the rest of the family. She is only minimally involved in his care (she is a real piece of work, but I won't elaborate). For most of the first year, I took care of everything; now he has hospice care and two hired caregivers who take care of almost all of his needs except the social activities. The whole situation breaks my heart. If he had not remarried, I might have found a way to move him in with us so that he had family around all day. Oh well, lessons learned for the future...

Liz
 

Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
Thank's Liz

Hi Liz:

I am starting to feel more like a part of this wonderful group, everyone is so caring, I was feeling so lonelyl

God bless you, your dad and everyone in the forum.

Paty
 

caringheart

New member
Joined
Oct 31, 2006
Messages
1
Reason
PALS
Country
US
State
New Hampshire
City
Somersworth
My first post also

Hi Paty! My name is Sheila. My brother, Tom, has been diagnosed with ALS. He will be seeing an ALS specialist on 11/16. His speech and fine motor skills have been affected.
He has been getting muscle twitching in his arms.
My husband and I moved back to my home state to be closer to my brother. I know that I will be his primary caregiver.
Tom seems to be taking this better than I am. We can talk matter-of-factly about things but when I come home I cry. There is just the two of us left in our family.
I have been doing research on the Internet. I have signed on to be an ALS advocate, sent for information through the ALS Association, want to start a support group in our area.....I feel that it is good to "know your enemy".
As a professional caregiver I have an advantage many others don't. I am considered a professional because I studied nursing, took care of my Mom for ten years, took full-time care of my father-in-law for two years, and worked for a non-medical agency for over a year.
It is good to know that you and all of you reading this know what my brother and I are facing. It will be such a help to be able to give and get support.
I'm glad that you are with us.
 

paula B

Active member
Joined
Jul 23, 2006
Messages
87
Reason
PALS
Country
US
State
wisconsin
City
seymour
Hi Sheila

caringheart said:
Hi Paty! My name is Sheila. My brother, Tom, has been diagnosed with ALS. He will be seeing an ALS specialist on 11/16. His speech and fine motor skills have been affected.
He has been getting muscle twitching in his arms.
My husband and I moved back to my home state to be closer to my brother. I know that I will be his primary caregiver.
Tom seems to be taking this better than I am. We can talk matter-of-factly about things but when I come home I cry. There is just the two of us left in our family.
I have been doing research on the Internet. I have signed on to be an ALS advocate, sent for information through the ALS Association, want to start a support group in our area.....I feel that it is good to "know your enemy".
As a professional caregiver I have an advantage many others don't. I am considered a professional because I studied nursing, took care of my Mom for ten years, took full-time care of my father-in-law for two years, and worked for a non-medical agency for over a year.
It is good to know that you and all of you reading this know what my brother and I are facing. It will be such a help to be able to give and get support.
I'm glad that you are with us.
Welcome to the neighborhood. Sounds like your brother is in good hands. Dont be afraid to post your thoughts,,fears or questions here. Around here we are not strangers,,just friends you havent met yet.

PaulaB
 

Pollyanna

Active member
Joined
Sep 29, 2006
Messages
38
Country
US
State
TX
City
Azle
Hola Paty! And Welcome to our Neighborhood!:-D

I like what Paula said, "we are just friends you haven't met yet." What a nice thought!

I too am my husband's only caregiver, and his is not bulbar either, but seems to be progressing quite rapidly. As you will soon find out, ALS is different for everyone...so far, I've read no two cases that were the same. And that's one of the things that makes research so difficult! But I'm thankful for any research they do and any improvements they can offer us. And it sounds like you have good clinics available to you, even with the 2 hour drive. We have to drive about an hour and a half, but really, so far it hasn't been too bad.

Well, I just wanted to welcome you and encourage you to come often. These folks are wonderful, and we share laughter as well as tears. Burdens are lighter here, because we are all in the same boat...everyone understands and wants to help! And please, never never feel concerned about expressing yourself...you do a great job! :-D

Have a good day with your honey...enjoy every moment you have together!

Pollyanna
 

shelli458

Member
Joined
Nov 9, 2006
Messages
18
Reason
Lost a loved one
Country
US
State
Ca.
City
Ventura
This disease is the most isolating,horror filled,and least publicized of all diseases.I felt so out of sync when mom had it,almost like a viscious monster was invisibly destroying her piece by piece.I know how scary and haunting it is believe me.All I can say is reachout! Keep reaching out to others in this place for they are the only ones who can understand and heal you
 

anne

Distinguished member
Joined
Jun 22, 2006
Messages
157
Country
CA
State
ontario
City
unionville
Shelli458...Well said. My mom can no longer communicate verbally. Talking on the phone was her life. Has lived at home alone for the past 13 years since my dad passed away. Mom does not drive nor is she computer literate nor are any of her friends. I am really sad for her since it is such a loney disease. I continue to call her many times per day and talk to her. Only ask her yes and no questions and that is even hard to understand at times. When I visit with her, which is every other day, I call everyone that she would call. She writes down what she wants me to talk about and she listens on the other end. Talking devices have not worked for her. We take the little things for granted in life until something like this happens. God Bless all of you. Anne, Unionville Ontario
 

shelli458

Member
Joined
Nov 9, 2006
Messages
18
Reason
Lost a loved one
Country
US
State
Ca.
City
Ventura
I can only say that the pain of being a child(adult)of one sho suffers with this is astronomical.I feel for you so much because it's so heartbreaking and I still have nightmares.Feel free to email if you are panicked etc.,that is what I did with other daughers etc.I loved my mom so,so much and her life was her friends.God Bless
 
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