just a bad day

[Barbie4]

it is just a bad day!! It has been 22 months since my "friend" had been diagnosed with ALS. ALS sucks!! It especially sucks for the person who has it. It also sucks for anyone who really cares about that person diagnosed. Today just sucks!!!

I wish that ALS never touched my life, but I even more wish that ALS didn't touch my firend's life, her children's lives and her family's life.

ALS did come into our lives. She is lucky to have such a wonderful, dedicated and strong husband who never falters. She is also lucky to have endless friends who come and give her love and support.

But ALS sucks for everyone..... and for me....... today.........

[CindyM]

I agree, Barbie. You are always welcome to vent here. Cindy

[anne]

Barbie....I agree with you so very much! People with ALS become prisioners in their own bodies. It is the cruelest, worst disease I have every come across. It robbed my mom from her voice, her ability to enjoy eating the wonderful food she would cook and it robbed her from breathing. It robbed us from being able to spend many more years with her.

Anne

[Icanmanz]

anne and barbie, it is so true! Als does suck! This disease is so bad. There isn't a day that goes by that this damn disease doesn't enter my mind. It has haunted me for life. I remember my son used to tell me he was so concerned for me. He knew I was taking it pretty hard. He would tell me that his pain was going to be over sooner or later, but mine was not going away, because I was going to remain here on Earth, suffering, and asking why........ He had a point there. So, what are we to do? God bless!

Irma

[Markbreton]

I have those bad days as well... venting is a good thing and we do listen.
ALS does suck!!! I have many times used much stronger words to describe this damn disease. LETS FIND A CURE!!!!!!!!!!!!
Mark

[Al]

Hi Barb. Yea it does suck. But in about half an hour I'm going to have a glass of wine. It won't really wash away any troubles but what the heck, it might help.
AL.

[Icanmanz]

That glass of wine sounds like a winner, Al. Is it Zinfandel? I could use some to settle this crappy feeling!

Irma

[Beebe]

Hi Barbie, I was thinking of you and Gail. Jack is at 21 months. I know they were progressing about the same. We go to the ALS Dr. at Robert Wood Johnson on Friday. Hoping his breathing level isn't too low for peg. He is still eating but it takes about 1 hour for each meal. Needs Bipap too. Keep in touch and will keep you updated too. Fondly, Beebe

[mrstadpole]

To have each other while we ALL deal with this "sucky" disease. Thinking of you all and praying that tomorrow is a better day... Dad was a little nicer today.. distant.. but at least he wasn't mean or seemingly irritated with my every move.. I love him.. but, glad it was an early night.. we both need a break.

Here's to tomorrow.. and US!!!!

[Icanmanz]

Mrstad.......our prayers must be working. Try patting your dad on the head, every chance you get, give him a little kiss, and tell him, "I love you daddy! God loves you, too." Volunteer a little massage every now, and then, don't wait until he asks. He'll appreciate you, he'll feel loved, and be a little comfortable. I tried this with my son, and it worked. God bless you, mrstadpole!

Irma

[trustinggod]

Hi Barb,

I know exactly how you feel. I am so sorry that you are going through all that caring about, and for someone with ALS entails. It's AWFUL, HORRIBLE, HEARTBREAKING and VERY, VERY HARD!

However, I want to tell you, from this side (almost 14 months since Linda died) of the
ordeal that the experience has changed me for the better. I find that I see things differently now. The sunsets are more beautiful and much more appreciated. I've learned to slow down and listen to the people around me and my heart has softened
in so many ways. I have also learned that I can do things I never would have believed
had I not helped Linda through her journey.

I believe the best gift we can offer to another is the gift of presence and being WITH
them in their suffering. I am sure Gail is comforted by your sweet ways of caring for her.
Don't be afraid to let her see how you are suffering with her. I think she'll appreciate knowing that you care so much. Also, I've learned that broken hearts are easier to share once you get over the pain.

Hang in there Barb and never, ever be afraid to ask for a hug!

God Bless,
Jeanne

[jdale949]

Hi Barb. Yea it does suck. But in about half an hour I'm going to have a glass of wine. It won't really wash away any troubles but what the heck, it might help.
AL.

Hi Mr. Al,
I am new at this site but I can already tell that I like your attitude!HAHA!:lol:
My mom is in her last stages of ALS and sometimes you need that glass of wine to relax and get things in perspective.

Barb, I agree with you totally. This disease is very ugly. Hang in there though.

[geehdee]

My wonderful daughter heard me say that after my diagnosis. Then she and her marvelous husband quit their jobs, disrupted their young lives and moved across country to move in and take care of me. I know, I know....I'm the mom and I gave her life, but this generosity makes my heart glow. I need a lot of help; it was getting scary living alone. She told me that what took the edge off her fear was reading the inspiring posts in this support group. Thanks to all of you. Keep breathing for your PALS. We know you care and we love you for it.

[MarciaA]

Barb,
I can't believe that almost 2 years have gone by since Gail's diagnosis! In many ways it seems like just a short while ago when we both joined the forum. So what was especially bad about yesterday? I agree, ALS sucks...but usually your posts don't sound so down...what's up? How's Gail's progression? You mentioned her husband and friends...how are her kids doing with all of this? Hang in there, Barb! We're all here for you! :-)

Marcia

[Beebe]

Hi Marcia, How are you doing??? Are you still teaching? The 3 of us came on about the same time. Wondered what was doing with Gail too. Fondly, Beebe

[MarciaA]

Hey there Beebe!

Yep, still teaching. I haven't heard an update about Gail for quite a while. It sounds like Jack is sort of where Kathy is. She got her feeding tube this last fall...uses it mostly for supplemental liquids and I think some meds that are too big to swallow. She still eats okay on her own. Before her peg procedure, her FVC was at 47%. She has a bipap, but hates it. She can't seem to find a mask that fits properly so it either slips during the night or makes farting noises. Also, if she has a coughing attack, she can't get the mask off and has to try to wake up her husband. I'm hoping that we can find a mask that works, because I'm sure she's not getting the oxygen that she needs (nor is she getting rid of the carbon dioxide). It's good to be back on the forum. I hope to keep in touch more now!

Marcia

[northerngirl]

Hey girl, Your doing a great job, being a friend thru such a heart breaking adventure is no easy feat. Remember you will have some more great moments together. Tomorrow has the new hope of a smile or if your lucky a good giggle over something. Hang in there and keep being wonderful.

[Beebe]

Hi there, Good to hear from you. I can't believe it'll be 2 years either. Time does fly. Sent an email to Barb, hopefully I'll hear from her. Good to have you back on. Fondly, Beebe

[Barbie4]

Thanks everyone:

I needed to vent and I would have said worse words but the forum won't let me. ha ha.

Al I have had so many glasses of wine this week, my tears were a nice shade of burgundy. :)

Marcia and Beebe, Gail seems to be about the same as Jack and Kathy. She just got her feeding tube a week before Christmas, she can no longer talk but thank Heavens she can still type somewhat. It is really hard to communicate. I really miss hearing her voice.

Jeanne, You always know exactly what to say. You have such a great heart and I always feel comforted after hearing your words. Thank you.

Thanks to the members I haven't talked to before. I appreciate your support and words reminding me that we are all in this together.

It is so comforting knowing that you are all here and truly understand. Bad days happen, but like Al always says. "one day at a time"! Tomorrow Gail and I are going to watch Hairspray together. I can't wait.

Thanks again, you are all in my thoughts

Barbie xo :neutral:

[Al]

Hey Barb, When you coming over for a drink here Maybe even feed you this time.
AL

[Barbie4]

Hey Al:

Hopefully sooner than later. I worked alot over the holidays and am now trying to catch up. So much for the part time job!!! now things have slowed down to a nice one shift a week. I will have to sweet talk my D.D. too. ha ha.

Have a great day and keep those funnies coming. You always send the funniest ones. makes me laugh out loud.

Barb:)

[Al]

Well my transportation is going to Florida for Feb. so will be housebound. Might be an idea to plan something for then.
AL.

[Beebe]

Hi there, Too bad you live so far I'd even cook. lol My Best to you, Beebe