new to ALSforums

Status
Not open for further replies.

felicia

Member
Joined
Nov 24, 2006
Messages
12
Reason
PALS
Country
US
State
ca
City
antelope
hi i just signed up and have alot of questions. first let me tell you a little about me. i am 61 yrs old, female and have ALS. i type with one hand, therefore you will noticed few caps. i was diagnosed with having als in jan 2005. at that time, i had weakness of my left leg and i tripped occasionally. oh my how time flies. as of today i have lost mobility in my legs, left arm, trunk weakness, right arm weakness, i eat soft foods and drink liquids with a slurp. so my als is progressing quite fast. i try to be positive but its not worker. i cry alot as i feel sorry for me. but i cry because i don't know how else to express my disappointment of having this disease and that i have let my love ones down. i always was to strong one. now i feel useless. my daughter tool care of me for 8 months but she was going crazy. so i had to go to a boarding facility thank you, felicia
 

Lindoglvr

Member
Joined
Nov 24, 2006
Messages
26
Reason
Learn about ALS
Country
US
State
VA
City
Newport News
Hugs to you

Hugs to you dear Felicia.

It really sucks this ALS. I'm not diagnosed yet, but feel from my latest symptoms and everything else that has been ruled out, that I may have it or a type of motor neuron disease.

First, easier said than done, but don't feel like you have let your loved ones down. The only thing that has been let down, is you, by your body, by this horrible disease that robs people of their independence and ability to do things, while keeping their mind intact!

It is so hard for caregivers to have to take care of someone with multiple deficits and disabilities due to neurological or other illnesses that cause diability. I bet your family feels as if they've let you down because they've had to put you in a nursing facility, but sometimes that's the best thing for all concerned. It's hard for a caregiver to be able to care, especially by themselves for a person 24/7 both physcially and emotionally...and the emotions go for both the caregiver and the givee. I know, like all, when one has to rely on others for care and give up their independence on things that they used to do for themselves it's extremely hard.

I think the board will be good for you. You'll find support and see that you aren't alone at all in what you feel. It's a good place for venting as well.

I hope this post will help to let you know, that we all are here to support each other.

Are you on antidepressants? If not, that should help and don't be afraid to go on them. They really can be a lifesaver (spoken by a clinical depressive).

Lots of hugs,

Linda
 

liz

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

Welcome, Felicia.

I think it is great you have access to a computer at your facility so you can reach out like this. It is a terrible choice we are given - to be a burden on those we love or to be separated from them. I'm sorry you are having such a difficult time. If you can keep in touch with this forum maybe you will feel a little less sad. I recently heard a saying that I believe is true - a sorrow shared is a sorrow halved.

Liz
 

felicia

Member
Joined
Nov 24, 2006
Messages
12
Reason
PALS
Country
US
State
ca
City
antelope
thank you linda

so many thanks for your reply. this forum is what i needed. i signed up for the local ALS chapter for support but can't go. felicia:-D :-D
 

felicia

Member
Joined
Nov 24, 2006
Messages
12
Reason
PALS
Country
US
State
ca
City
antelope
thank you liz

iy is so true - a sorrow shared is a sorrow halved - i already feel some whay better knowing i'm not alone. since i went inyo a boarding with only 6 residents, i have a private room and took my personal computer with me. it is my daily activity.:-D :-D
 

Lindoglvr

Member
Joined
Nov 24, 2006
Messages
26
Reason
Learn about ALS
Country
US
State
VA
City
Newport News
Felicia,

You're quite welcome. We're all here for you!

Linda
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi felicia - how are you today? There is a lot of grief and loss with this disease so I am not surprised you, like a lot of us, cry now and then! It is good that you are able to keep in touch with your computer. Can you tell us a little about your living situation? Are there others there with medical needs and are caregivers on duty round the clock?
 

felicia

Member
Joined
Nov 24, 2006
Messages
12
Reason
PALS
Country
US
State
ca
City
antelope
hi cindym, the boarding home has 5 residents with dimentia and me with ALS. there are 2 full time caregivers on duty 24/7. one caregiver comes in part time. i am allowed to do everything that i can do. i have a private room with my furniture that i need to keep me comfortable. i sleep 12 hours and i am out of my bed 12 hours. i'm most of the time in my motorized wheelchair which allows me to go outside. i live in california and the winters are mostly mild. i can still eat and i feed myself. once i can't feed myself, the caregiver will feed me. i bought a sabina lift with a hygiene sling. this allows easy access to take down my pants to go the toilet. god bless, felicia
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi felicia. It is good to hear from someone that is in a care facility. I'm not sure if we have any others on forum that are so it will be good to get your viewpoints on different things. Thanks for coming on board and look forward to hearing from you. AL.
 

felicia

Member
Joined
Nov 24, 2006
Messages
12
Reason
PALS
Country
US
State
ca
City
antelope
thank you al, i am happy i joined. i wish i knew about this forum 2 years ago. i had so many question and no answers. i had to find out the answers the hard way. felicia
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
I know something about dementia, Felicia. Most of the residents in my Mom's nursing home have dementia as does she. Most of the folks I've met are still good company but of course I am not there with all day everyday... When you go out, are you able to get someplace you enjoy?
 

marlo

Active member
Joined
Feb 20, 2006
Messages
92
Hi Felicia

Welcome, to our reality. Here you'll find answers to your questions, and shoulders to cry on when you need to vent. You said your away from your family, but i assume they live close enough to come visit. Are you allowed to leave the nursing home to go out for lunch with them from time to time? Or maybe go home for short visits ?
I pray you have many good days,, and come talk with us again real soon.

Love and Prayers
Marlo
 

BWk

Distinguished member
Joined
Jun 6, 2006
Messages
113
Reason
PALS
Country
grant
State
new mexico
City
silver city
Felicia, Welcome and know that we are here for you for support and encouragement. Computers and the internet are a God Send for people like ourselves don't you think. Barry
 

terri

Distinguished member
Joined
Jul 7, 2005
Messages
126
Welcome Felicia,

I'm also glad you found this site. There are lots of people here that will brighten your day some.

terri
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Like everyone else has said Felicia, welcome to the forum. I'm looking forward to learning more information from you on the type care you are receiving. I have always said I did not want to go into a home for care as I could not use my computer. I'm glad you are able to reach out to us. Hugs and best wishes anytime you need them.

God Bless
Capt. AL
 
Status
Not open for further replies.
Top