Coping strategies

[MarciaA]

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]

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]

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]

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.

[braveheart]

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.

[MarciaA]

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]

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]

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]

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

[Jeannie]

Hi Marcia, sorry to hear your sister has been recently dxed 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.

http://classes.kumc.edu/sah/phth760/images/afoart.jpg

best wishes Jeannie xxx

[MarciaA]

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]

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]

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]

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]

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

[braveheart]

Marcia, I don't mind your questions. My legs,feet,fingers,arm are weaker,I cramp/spasm easier, more fasiculating that is in my right side now. Sarah

[tara2k]

MarciaA,

A great resource for you might be the ALS handbook. It has alot of info on what to exspect. The ASLA. org website also has info on progression (which is widely varied)

An ALS diagnosis is a rollercoaster emotional ride for all invovled. My father was diagnosed 10/04. The intial shock was staggering. For ALS patients (from what I've read and my experiance with my father) they can experiance mood swings. One moment my father was laughing and then he would cry in the next.

My family tried very hard to reasure my father that we would be there through everything and always be supportive. I think it is natural when you have a diagnosis like ALS to wonder if people will remain supportive and loving. It broke my heart when my father said he didn't want to burdon us. He never once felt like a burdon, if fact I enjoyed every min. I got to spend with him.

[Barbie4]

Dear Marcia;

I have been reading your notes since you started but have been unable to reply until now. David fixed the problem for me, and I wanted to send you a note to let you know that your questions and notes and the replys that people have sent to you, have been so supportive to me.
Although it is not my sister that has been diagnosed, it is my best friend who is more like a sister to me than my own sisters. I think she was diagnosed about the same time your sister was, so can totally understand the stage that you are at now.

I am trying my best to do what I can for her, but it is so hard. The devastation is unbearable and we are just trying to get through each day. I don't know what to say to her and wish that I will wake up and this will have been a very bad dream. I have just started to push myself to make myself believe this nightmare is true, until now, I have pushed it from my mind. I am ready to start learning about it and connecting with people who understand and can help me to help her.

thinking of you

Barb :)

[MarciaA]

Barb,
Thank you so much for your kind words! Yep, we're in the same boat. I'm still finding that some days are okay and others I feel like reality just shmucks me upside the head and I don't know what to do. I, too, have found comfort and help from this forum. It's so easy to feel alone with all of this, but here I feel like I can ask even the most stupid question and it's okay. It's like a whole roller coaster ride...I'm still just trying to hang on so I don't fall. True acceptance of the end of the ride hasn't REALLY sunk in yet. I'm still hoping for a LONG, LONG ride...preferably one without an end. I don't always know what to say to my sister either. I will say that reading "Morrie: In His Own Words" was very inspiring and helpful.

I'm with you on the bad dream. Remember the TV show Dallas? One whole season was just a dream...sounds good to me in this situation! :-)

Ironically, my sister has a best friend named Barb...so I thought you might be her until I noticed you're from Ontario.

Best of luck to you! I'm glad you found this forum! Hang in there!

Marcia

[Barbie4]

Hi Marcia;

Thanks for your reply. My friend and I and our families just had a couple of great days together. We went away for a few days. We had a good cry when we first arrived because she just started to have twitching in her face. We got through that and from then on, it was fun and laughs. We forgot about the real world for a bit. We just enjoyed watching the kids play and have fun. Boy does it ever feel good. Reality sucks though and I know, now that we are back, that I have to deal with this again and stop pretending. I am just so glad we had some fun and I saw the smile on her face.
I will look up that book for sure. Is it the same as " Tuesdays with Morrie"?
I think that was a movie.
Anyhow, I will look for it. Thanks.

take care, Barb :-D

[MarciaA]

Barb,
The book is written by the same "Morrie". The movie is great, too.

We spent Easter weekend building a ramp to Kathy's house. It looks great and only has handrails left to finish. It was sort of bittersweet, though. It was great to get it done...but reality kept slapping us in the face. There were many times when it was so hard to come to terms with the fact that she was going to NEED this ramp. We had to cut down part of her magnolia tree that was almost in bloom...that was really hard. It a tree that shouldn't really grow that great in Minnesota, but it's flourishing...but about half of it had to be cut down because it was in the way of the supports for teh ramp. Like you said, Barb, reality sucks.

I came away from the weekend so emotionally and physically exhausted. I'm feeling so helpless right now. I hate the thought of her going through all this. I love our talks and she said that they're helpful for her, but I want to do more for her...but I don't know what more I can do other than be there for her.

She went to her support group last week. They meet as a whole group for a while and then the spouses/caregivers go in one room and the PALS are in another. She said there are about 30 PALS in her group which makes it hard to have heart-to-heart talks. I don't think she's really getting the support that she needs from the group. Do any of you have advice about this? She doesn't really want to be split up into groups of people who are at the same "level"...but is having difficulty relating to those who are in advanced stages of ALS. Part may be denial, I'm sure.

I will probably vent more later...but my students are coming into class now.

Marcia

[Barbie4]

Hi Marcia;

I ordered that book today from Amazon.ca. I hope I get the same from it that you did. Thanks for letting me know about it. I am sorry to hear that your sister is not getting what she needs from her support group. I was hoping that when my friend was ready, that would be a great help for her. Maybe it is different for everyone. She is not ready for any of that right now. She's afraid of meeting other PALS, and seeing what will happen to her. She has an Appointment next week for another EMG to see if what she has is PLS or ALS. The first doctor diagnosed her with ALS, and the second with PLS. She is afraid of the next crash. She knows that if it comes back ALS that she will have to face it and think about telling her kids. I will have to then tell my kids. Oh, this is such a huge drag. I just don't want to have to do this.!!! I am a really happy person in general and have always been. This is so hard. I appreciate you listening to me, (all of you). I have read so much that you have all wrote and feel so much support.
Marcia, your entry was the first I read. I under stood everything you said.

My friend called me today and she was so angry. She asked for some small help from someone in her family and they said no. She was so angry that all of us could go back into denial and live our lives and she couldn't. I didn't tell her that none of us are ever going to be the same now. She was just angry and having a bad day. The kids were home from school and her husband went back to work. Marcia, how often do you visit now? Are you visiting more? Does your sister want you there more? I think you said you were an hour away, so am I. I am going to see her once a week during the week for now. The kids were asking too many questions on why Auntie Barbie was over so much. They don't know anything yet. Does your sister have children? One of my friends said to pace myself. I am still working fulltime as you are. I feel that I should keep working and save for now, while she is still walking. I hope we will be able to take some more trips together too. maybe, I should try to find something part time now.

I am sorry this is so long. I just need to get this off of my chest. i am trying so hard to make the right choices and say the right things.

Marcia how long has your sister known about her illness? Can she still walk? The magnolia tree must have been hard on her. My husband and her husband are handy too. I have made note of the ramp website. Thanks.
Well, Thanks again. my thoughts are with you. I have read in some threads of the friendships made on this forum last for years and I am sure we will be here the same.

Barb :cry:

[MarciaA]

Barb,

I am visiting Kathy more these days. I don't want to monopolize her time, but want to spend as much time as I can with her. I also want my daughters to spend as much time with her as they can. They are 8 and 6 and depending on how fast Kathy progresses, I want them to have lots of memories and pictures so that they are able to remember her better. That may sound sort of morbid...sorry. I am quite a bit younger than my siblings. There were 13 years between me and my next oldest sister. When she went to college, I went to Kindergarten. After that I only really remember seeing her on holidays or other special occasions. She died of a brain aneurism when I was 12...as a result I don't have a lot of real vivid memories of her. I don't want that to happen to my girls with their Aunt Kathy.

My sister's diagnosis was in early February. Her left hand is losing more and more strength and dexterity. The muscles in her left hand are also starting to atrophy. Her left foot is beginning to drop as well so that she must think about it when she walks otherwise she trips. I haven't seen her trip yet, but evidently it's happened. She has twitches all over her body but she notices them more when she's sitting down or laying down and she's relaxed. Some she only feels whereas others she can actually see. She said the twitches sort of feel like what a pinball machine must feel when the flippers move inside it. She does not have children, but this sensation to me sounds a little like when a baby kicks inside of you. Can any of you PALS that are mothers comment on this?

My thoughts are with you, too, Barb...and with all of the rest of you out there on this forum! I'm so very thankful that this forum exists to help with all the pain caused by ALS! Without it I'd be a bigger basket case than I am already! :-)

Take Care!

Marcia