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BigSista

New member
Joined
Sep 3, 2010
Messages
9
Reason
Loved one DX
Country
US
State
Oregon
City
Portland
I'm new to this site and this forum and I'm happy to have a place to go and ask questions. I know very little about this disease, but I am learning and willing to learn more. My sister was diagnosed a few months ago. Her left leg is largely affected and she wears a brace. Her arms and right leg are not yet affected, however, she does have fasciculation occurring in her other leg and sometimes her arms (I think). Maybe her ALS is slow in progression....who's to know?

Right now we're waiting (sometimes I wonder for what) but we decided to wait for another limb to be affected before we move in together. Is that crazy? We have no idea how quickly the disease is progressing. I feel like I'm at a standstill and should be doing something. At other times I feel that I need to just stand still, be supportive, and the right time will present itself and we will move forward from there.

I was hoping to have a family of caregivers....the truth is the family isn't really willing to give up too much of their lives and honestly, they're young kids in their 20's and I remember what that was like and how important my life was to me during those years. In my dreams I imagined something along the lines of "it takes a village" but it might just take a couple of sisters and brother to get this thing done and that will be our village.

My sister with ALS and I are in Oregon...another sister in San Francisco and a brother in Japan, both of whom have been tremendous supports.

Any feedback, advice or whatever-whatever is welcome and appreciated.
 

sadiemae

Extremely helpful member
Joined
Sep 20, 2009
Messages
2,527
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
Is your brother "Brother"
 
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BigSista

New member
Joined
Sep 3, 2010
Messages
9
Reason
Loved one DX
Country
US
State
Oregon
City
Portland
My brother is "Brother"....
 

rkyoung

Active member
Joined
Sep 4, 2010
Messages
31
Reason
Loved one DX
Diagnosis
04/2010
Country
US
State
NJ
City
Willingboro
Dear BigSista,

I am the big sister of my dear sister who is diagnosed with ALS. My sister's disease is moving more rapidly than I can find ways to help her. It is totally heartbreaking. And it is true that you and your sister will eventually be left with only one another as people these days do not seem to care much about assisting anyone with this much trouble even when they are family. I was never so shocked to find this to be true. This forum of people who are going through all that you are going to experience is actually helpful. My advice today is to get the best book I have read on the subject to date. Amyotrophic Lateral Sclerosis: A guide for Patients and Families. Author Hiroshi Mitsumoto. Look for it at Amazon.com. Might as well avoid the bullshit I had to go through from the jump. Best of luck in the next few weeks. I'll check back with you soon to see how you are.

Roberta
 

sadiemae

Extremely helpful member
Joined
Sep 20, 2009
Messages
2,527
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
NV
City
Reno
we welcome your family to our family.
 

BigSista

New member
Joined
Sep 3, 2010
Messages
9
Reason
Loved one DX
Country
US
State
Oregon
City
Portland
Thank you so much for your reply, Roberta. I appreciate your honest words of support. I will get the book. I glanced thru it online and think it's probably time to buy it. I will continue to post and stay in touch.

Ruth
 

BigSista

New member
Joined
Sep 3, 2010
Messages
9
Reason
Loved one DX
Country
US
State
Oregon
City
Portland
Thanks Sadiemae....looking forward to more communications with you.

Ruth
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,835
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
Nothing beets the information you will receive here.
 

Lavender Lady

Distinguished member
Joined
Jul 6, 2010
Messages
445
Reason
PALS
Diagnosis
08/2010
Country
US
State
WA
City
Lake Stevens
Ruth, Glad you care enough to help your sister. I would be lost without mine. Sorry you have to be here at all but glad you found a great support group. Welcome.
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,168
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
City
Eastern Shore
Ruth, hello! I've been waiting to meet you, as Paul has told me about you. I had a thought as I read these posts, concerning your sister (is it ok to use her name? If so, you start...) and the need for "the village". I would think it best to go ahead and move in together and get to know your neighbors, even if you have to get yourself a dog to introduce you to them. I'm half joking; it's a great way to meet the neighbors but only if you love dogs yourself. Your sister, as I understand it, is not one to reach out to others. If you can be helpful in getting to know her neighbors, that may be the only way it's done. For good neighbors to have a house key is wonderful. Later, when she is unable to get up should she fall, a pendant is nice. Mine first beeps loudly within the house, then begins dialing four people I selected, in order, repeating until someone picks up. My pre-recorded message just says I'm on the floor and need help. They come running. One time fee to buy it, no monthly fees.

I agree about the book Roberta spoke of. And this forum is wonderful, Ruth. To have so many variations on the problems associated with ALS and also with being the caregiver is great. What you're undertaking is so lovely. I'm sending you a big hug.
Ann
 

BigSista

New member
Joined
Sep 3, 2010
Messages
9
Reason
Loved one DX
Country
US
State
Oregon
City
Portland
Ann,

Nice to meet you and yes, we can use my sister's name, Marsha (at least I don't see way not). I like the idea of the pendant and getting to know the neighbors when we move. We're actually going to look at a house on Sunday. Four bedrooms, 3 bath and swimming pool - - something my sister loves to do especially since ALS. Lounging in the water with not a care in the world....just floating. Ahhh. Anyway, we'll go look and see what this place is all about and if it will work for us. Let me ask you something. Marsha was asking me tonight if I thought maybe her bones were weakened because of ALS. In other words, since her walking is so difficult these days and should she fall would an ankle tend to break more easily? I haven't read anything like that on this site, but I haven't read everything either. What might you know about that? Love to stay in touch we apparently have more in common than just ALS. Ruth
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,168
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
City
Eastern Shore
Hi Ruth,
The house sounds wonderful! As far as bone density, this is what pops into mind which would cause trouble. ALS in itself does not, but as you pointed out, she may have some falls. Problems leading to low bone density are, smoking, overuse of alcohol, lack of weight bearing exercise, especially before age 30. The exercise would be pounding type running, dancing, jumping, etc., or heavy lifting as done in a stable (bales if hay). Farm girls or dancers would be "lucky" later on.

Taking up rugs is helpful for dropfoot within Marsha's home, and she may need a "rollator" walker already. Her doctor can write a prescription for that, for insurance purposes. I'll post a link for the pendant under the tips page as well, hopefully as here.

Ann...just click on my name or any name in blue and ways to communicate will pop up.

Personal Assistance Voice Dialer, PA5800
Invacare Heavy Duty - Invacare Heavy Duty Rolling Walkers Here's an example of a rollator--not sure this is the best price you could find.
 

mybrotherwes

New member
Joined
Aug 10, 2010
Messages
5
Reason
Loved one DX
Diagnosis
09/2010
Country
US
State
USA
City
Texarkana
Hi Everyone! I am new here and it looks like I will be visiting quite often. My brother Wes, age 56, has been suffering from the ALS symptoms for at least a year, maybe longer. He had a final MRI last week and we finally received the results yesterday. He does have ALS. He hasn't been able to talk for a year, just grunts. He cannot hold his head up at all. He constantly complains (in writing) that he is suffocating. When they check his oxygen level they say it is fine. Can anyone tell me why he feels like he is suffocating? I am thinking maybe it is from anxiety? I am worried that he really is having a hard time breathing and no one is paying attention to him. He is in a nursing home but I am seriously considering bringing him home with me and my husband. He eats very little. When he does eat it is yogurt, pudding, applesauce, etc. He prefers to just drink Ensure & Boost, but the doctor at the nursing home insists that he needs to eat food (pureed) before he can drink an Ensure or Boost. I have a lot of questions, but I have already found many answers. I have been in contact with the MDA/ALS Association. I am just waiting to hear from them. Thanks to all for any information and/or advice. I am praying for everyone that has been touched with this terrible disease. Pam
 

abbas child

Very helpful member
Joined
Feb 29, 2008
Messages
2,168
Reason
PALS
Diagnosis
07/2007
Country
US
State
Maryland
City
Eastern Shore
Pam, I think you would get a lot more help if you are able to start a thread. At the top of this page, click onto the blue, "ALS Caregiver Support". Then at the top of THAT page, instead of a blue "post reply" rectangle, there's a "new thread" in blue. Click onto that, and you'll have a place to write (could just copy and paste what you wrote above). You have a lot to discuss, and it certainly warrants your own thread.

Pam, I'm so very sorry for your brother's condition, and to me your concerns sound very valid. I'd also question his breathing (a build-up of carbon dioxide is a common problem, and full pulmonary testing is needed), as well as his anxiety. I think that your desire to be his caregiver in your home is wonderful, and he's very fortunate to have you going to bat for him.

Love, Ann
 
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