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MarciaA

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PALS
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MN
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Owatonna
My sister was recently diagnosed with ALS. I'm trying to figure out just how to cope with all of this. Her symptoms are progressing, but I'm not sure what to expect in terms of time. I feel like I'm sort of on this roller coaster of emotions. Some times are okay, but other times I just feel so overwhelmed with emotion.

I have two small children who love their aunt dearly and know she has ALS...but don't know the whole story yet. I've been trying to stay "tough" for them and not show a lot of emotion, but that is starting to take its toll on me, I think.

I can't figure out how I'm supposed to deal with all of this. Do I need to just sit down, vent and cry for a while? How early do I tell my children about the end result of ALS? I can't expect to stay upbeat all the time, but how do I find a balance...or is there one?

I'll take any advice from anyone out there! Thank you!

MarciaA
 

hope

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I am so sorry you are going through this, it is very painful and all of us here understand how you are feeling. I feel it is very important to let yourself feel what you feel. If you feel like crying then you should allow yourself to cry. Your emtions will change. I feel like I just get settled with one emotion and then another one is there. I can honestly say there are days when I do not know what to feel. I used to hold all my feelings in and it made me very sick. My husband was diagnosed with als in september and I cannot count how many times our emtions changed. Let yourself feel, it is okay to cry, to laugh, to get angry. I said to the doctor one time, I feel like going out in a field and screaming, his reply to me was you should. My heart goes out to you I wish I knew the answers for you, I hope this helped a little bit.

sandy.
 

MarciaA

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PALS
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progression of symptoms

I know each person that has ALS progresses differently, but cna anyone offer up any ideas of what I can expect? My sister first noticed some strength differences between her hands last fall in October. About a month ago it was confirmed that she has ALS and now she has a lot of trouble with her left hand. Buttoning shirts is pretty much impossible, scraping out a bowl is quite difficult, closing a "zip-lock" baggie, etc. She also says that now her left foot sometimes trips her up and she sort of has to think about it when she walks so that it doesn't drag. Can anyone else out there give me an idea of how I'm supposed to interpret these changes? How fast is this progression and what sorts of things can I expect?

MarciaA
 

braveheart

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Hi Marcia, My older sister(52) was with my husband and I when we got the confirmation of ALS. She has yet to show any emotion about hearing this, she lives in the states and we talk often. I sent my brother (55) an email since it hard to say the words to those you love, he has never responded. My mom did cry, thank God. My point is that sharing emotions is so important to mental and physical health, if you can tell your sister how you feel, you both will benefit from a good hard cry I believe. Your kids can only handle a little bit of info. when they are small. I wouldn't tell them about the fatality but that Auntie will need our help since she is very sick, deal with each progression as it comes, it's okay to let them see you cry when you are sharing info. They need to know that it is important to let feelings out.
Best wishes to you and this tough journey you are all on.
 
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braveheart

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Hi again Marcia, The symptoms can progress slowly or gradually, they can stop for years, this disease is not predictable which lends to the fear factor because of the unknown.
I was fitted with a leg/foot brace that supports my "drop foot" and helps me to walk safely and not get painful hips and low back from the way my walk gait is thrown off.
 
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MarciaA

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PALS
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MN
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Owatonna
leg/foot brace

Braveheart,

Help me to visualize your brace. Does it connect your foot to your upper leg so that it can be lifted easier? Do you mind if I ask when you were diagnosed with ALS? What are you noticing as changes in your symptoms?

I apologize for all the questions, but I still feel like I'm new to all this and I figure research will help with my understanding, coping, and acceptance.

I'm so sorry that your family was less than supportive of you! I can't imagine how that made you feel. I will take your advice and talk to my sister about how I'm feeling. She and I are pretty close even though we are 14 years apart in age. She lives an hour away so I know I will be able to see her quite often...and now we will make a point to see her as often as possible!

Thank you for being so helpful already! I was directed to the Canadian ALS site by my sister-in-law and am very glad that I joined this support group!

MarciaA
 

braveheart

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Hi again Marcia, Please don't apologize for your questions, that is how I learn too!
I was diag. last Sept. had symptoms for about 10 years of hyper reflexes and a gradual weight loss that could not be explained. My brace is L shaped plastic with a band of stong velcro at the top that fastens below the knee this must be worn with a sock or over pants and wth shoes that hold it from slipping like my leather slippers do.
Symptoms came quickley after diag. Since then my left hand is weaker and showing muscle loss, hand and fingers cramp easier, I take prescribed Vit. E for cramping, it helps. My left foot lilts inward and my big toe catches as does my left finger. My left leg bone is bulging from muscle loss and I am very underweight as well. I hope this helps you, as hard as it may be to read, take care.
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
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NW of Toronto
Hi Marcia sorry that you are here but glad you found us. ALS is so different for so many people that it is difficult to tell you what to expect. Someone might say that they lost the use of their hands in six months and the next guy says 3 years into the disease his legs don't work but his hands do. I posted a link a short while ago on how to tell kids about ALS. I'll get it again and post it. You didn't say how old your kids are but it might help.
http://www.march-of-faces.org/KIDS/ OK found it. It may help. Hope it does and welcome to our little select group.
Al.
 

MarciaA

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PALS
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US
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MN
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Owatonna
Al, Thanks for the kids website! It looks like it should start some good conversations! My oldest daughter will turn 9 in May and my youngest turned 6 in January. We have books on coping with a serious illness...but haven't used them yet because my sister's symptoms aren't that visible yet.

I had a good talk with my husband last night. I vented and he helped me to realize that I need to focus on what I CAN do for my sister and not what I CAN'T do. To start, I'm going to find things we can do together where her symptoms won't even be an issue. I'm going to be honest with her about my feelings so that everything's out in the open and we can progress with our lives together. It's like the quote from Shawshank Redemption..."Get busy living, or get busy dying." I'm going to try to focus on teh living and the time we have left with my sister. Does this sound like I'm on track?

Thanks again for all the replies! I look forward to hearing from all of you more and more!

Marcia
 
J

Jeannie

Guest
Hi Marcia, sorry to hear your sister has been recently diagnoseded with als, sounds like you are getting on the right track, after the good advice :)

Here is a pic of a ankle brace, which may help your sis with walking/tripping.

afoart.jpg


best wishes Jeannie xxx
 

MarciaA

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116
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PALS
Country
US
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MN
City
Owatonna
looking ahead

Good morning! I talked to my sister yesterday. She had been to an ALS support group. She commented on the variety of stages that were represented at the meeting. Hopefully she finds the meetings helpful! I know I've found this support group extremely helpful so far! She came away from the experience with this to say...

"Here’s my fear today: Right now, lots of people are offering lots of support. The more I lose, the more I will need people’s support – and the less likely they’ll be to give it."

I tried to reassure her that we will all be there for her through thick and thin. It will be difficult to see her suffering and deteriorating, but we will still love her just the same or more. Can anyone out there help me with this? I have a few questions/concerns...

1. I'd like to know if the PALS out there have had similar fears and what (if anything) helped ease them.

2. I'd like to know if the caregivers and/or family members of PALS out there have any advice how to assure PALS that we won't bail out on them when the going gets tough.

3. Caregivers/family members...do you find yourself over analyzing things that the PALS do? When I last visited my sister, I noticed that some of her words were slurred a little. I may be hyersensitive to all this now, but I am also noticing that her concerns are focusing around her ability to speak and communicate with us. Am I over analyzing? Is this normal? Have any of you done this sort of thing as well?

Marcia
 

braveheart

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Joined
Dec 14, 2005
Messages
32
Coping?

Hi Marcia, Since my symptoms are progresing far quicker than I hoped I find myself feeling angry, enough is enough, I have a wonderful husband and an almost 13 yr. old son! I guess I plan to keep myself mentally busy, distracted and trust that God will heal me in His own time. This is not easy, it is the major trial of my life.
You are saying the right things to her. She may want humor, go places, visit old friends-ask her. I know that is what I want but I did not grow up here so I feel very isolated, I am glad she has you.:) Sarah
 

MarciaA

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Messages
116
Reason
PALS
Country
US
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MN
City
Owatonna
Sarah,
Can I ask when you were diagnosed and what sorts of symptoms you have? I am so sorry that this is happening to you and your family! I'll have to look at a map to see where Saskatoon is. I live in Minnesota and I've been to parts of Canada, but have not been to Saskachewan (did I spell that correctly?). God bless you!
Marcia
 

braveheart

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Joined
Dec 14, 2005
Messages
32
Symptoms

Marcia, I was diag. last Sept. I had a weak response in my left ankle, toes, hand and fingers. I had an EMG that day since I flunked the first exam. and I failed again. Sent for an MRI to rule out other diseases, passed.
I was diagnosed for sure by specialists at the MS/ALS clinic.
Saskatchewan is between Alberta and Manitoba, Saskatoon is in the lower 1/3 to the west. Sarah
 

MarciaA

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Messages
116
Reason
PALS
Country
US
State
MN
City
Owatonna
Sarah,
I really hope you don't mind me asking all these questions, but I find it so helpful to gather information from so many sources! You said that your symptoms are progressing faster than you had hoped. What sorts of changes are you noticing in these last few months in comparison to when you were diagnosed?
Marcia
 
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