Coping strategies

[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]

thinking of you

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]

a couple of good days

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]

our New Reality

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

 

[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

 

[livenowgrievelater]

Just Diagnosed - Looking for Some Direction

Hi:

My mom was just diagnosed with ALS and we are coping now. It is not easy and I feel for any and all that have had to deal with this disease. God Bless all of you.

My current question resolves around disability. Her doctor told her she was eligable for disability right now and should go on it. That said, she is working and has good insurance. I do not know or understand what the process is for this side of things. My mom is not a wealthy person. She and dad are lower middle class with no retirement funds other the Social Security.

She is still working today and that keeps her salary at the highest she will ever see.

So what are we looking at? Does she need to go on disability now? Does that effect her insurance? I was thinking that she would keep her insurance and also get disability thus offsetting any major financial burden to her and the family. I just do not know.

Any help on this would be greatly appreciated.

Thanks and God Bless

 

[BethU]

Hi livenow ... I don't know much about all this stuff, but if your mom has health insurance through her job, I would guess that she would probably lose it if she goes on permanent disability. She might be able to convert it to an individual policy, though, which could be expensive, but not as expensive as having to pay out of pocket.

How old is your mom? Does she qualify for Medicare?

Your best bet would be to talk this over with an expert ... if there's a personnel department where your mom works, they would be able to answer your questions. If not, you should be able to get straight answers from the insurance company. If your mom is able to keep working for a little while at least, and it's not stressing her physically or emotionally, I would suggest she stay on the job and keep her insurance until you get answers.

Have you contacted your local ALS Assoc.? My ALSA rep came to the house, and went over my long-term care policy and gave me great advice, answering things I never even thought of. If you contact them, they may be able to answer all your questions.

Good luck on getting this figured out ... and prayers for your mom and dad.
BethU

 

[brooksea]

live,

Your Mom will qualify for Social Security Disability if she has paid into the system. She will automatically be approved with diagnosed of ALS. It will take 6 months for the 1st check to arrive and 5 months for Medicare (insurance) to kick in.

Use the search button at top in blue bar to find out more, as we have discussed this on this site before.

If you have questions after that, please post back and we will help!

Does she have disability insurance thru her employer?

 

[livenowgrievelater]

Re:

Thanks for the info. This is a start. We need to get an ALS rep over to the house ASAP to go over everything. They should be able to help with most of this.

I am going to set that up and will post back any questions.

My fear outside of the pain and suffering that my mom and dad will have to go through is the financial cost of this. You pay for insurance your whole life and when you need it is it really there? These things scare me. They are not rich. I do OK but am just 32 and have a budding career but its early. I have a wife with 1 kid and one on the way so finances for my family are on my mind but I am thinking of what I may have to do to help pay/fund all of this.

I have to get all these answers.

Thanks again!

God Bless.

 

[BethU]

Hi, Livenow ... check with the Muscular Dystrophy Assoc. too (Jerry's Kids). They fund ALS treatments and equipment too. They are helping me ... almost everything that my insurance doesn't cover, they will.

Good luck!

 

[georgia]

The time frame is after you quit work so if you wait too long there is still the 5 months more. So it is finding that fine line. If she is not progressing fast maybe work is good for the mind? If she quit could she pay CORBA till Medicare could kick i? You wouldn't want to be without any if you can help it. Could she pay bills on disablity and do something else with her time?

 

[JACKIEMAX]

I Have Read Your Posts About Your Sister, And Altho No Two Patients
With Als Are Alike, My Husband Had Those Symptoms Your Sister Has
Now Three Years Ago, And Altho He Is Bedfast Now, And Likely At
The End, It Is Not From The Muscle Loss, But He Developed
Respiratory Problems Way Too Soon. That Is What Will Cause
His Death, Not Muscle Problems.

Your Sister Could Live Many More Years With Her Als. We Have
No Way Of Knowing.

Good Luck And We Are Here For You.

Jackiemax