Take a coffee break with me

[Aussiemndcarer]

If I could, I would order a coffee ( it would be a long black with a dash of milk)
& sit down with a CALS or two and get to know you all a little better.
Sometimes I feel as if I'm losing my identity . Once , I worked in our own business, chaired regional development meetings,travelled a lot and really enjoyed the beach and farm life!i drank wine often with my man and just loved working together building a wonderful property & family.Now I've taken a sharp turn & really don't know where it's leading! What sort of coffee would others drink? Please join me.

 

[Lkaibel]

Hmm, I drink black usually but love a good Mocha for "dessert". If the coffee shop is in anywhere in Italy or France, I am having espresso

The day we knew it was ALS, which was June 15th, though we were diagnosed June 30th we lost a "perfect" life. My retired husband doing things around the house and for me while I worked a good job and we enjoyed our seven animals and many friends. Neither of us had ever been to a Doctor and gotten really serious news, let alone something like this.

YET, I must say we are blessed. Progression has been there, but very manageable. As we speak, Brian is pushing a snow blower. He can't shovel anymore and often (but not always) walks with a cane, but somehow today at least he can push a snow blower for an hour and a half. I am grateful, usually and we still enjoy many things in life together. We realy try to make our lives NOT be able ALS, which I know is much easier to do when you are not dealing with middle or later stages. Yet I see some amazing PALs and CALs here who are managing to do that regardless.

What I love about this group is we allow each other our pain too. You can come here and yell out that it all sucks and you are in grief for all you had and all you will lose and no one tells you to plaster on a yellow smiley face. Yet you get hope and encoragment here too.

 

[affected]

I so totally love meeting friends for coffee! It's always been one of my favourite treats. I normally only drink one coffee a day, and not every day. For me coffee is total luxury and I always savour it.

Double shot flat white, in a cup (not a big mug size) is my delight

Lovely thread to start up I'll meet for a coffee anytime!

 

[codyclan]

I adore coffee. It is such a magic elixer! My favorite is a double shot, flat white with skim milk, but I would take it in any form or amount! Wish I could come to Australia to meet you all for a cozy cup o' joe!
Tracy

 

[soonerwife]

Oh how I love coffee and I love this thread. Thanks for starting it. On a normal day I drink black coffee but on special occasions, I love lattes, caramel mocha for me please.

My PALS and I married in July 1997. I had two small children. He was my knight in shining armor. He adopted my children and is the best husband and father anyone could ask for.

I worked at the school while raising our kids and when they graduated from high school, I changed to my real job, lol! Only real because it pays so much better.

Our children were active in sports while they were growing up which kept up super busy and we took many road trip vacations over the years. We traveled to California, Florida, Canada, New York City and many others over the years making wonderful memories.

Our two children, one daughter and one son, have now given us 5 wonder grand babies. Three girls and two boys. The range from 1 to 7 yrs old and I adore them all. They give me reason to keep on going everyday.

Just when we started enjoying life with adult children, what we thought was supposed to be some of the most enjoyable years of our lives, ALS struck.

Honestly, I am still pretty angry about that...

I think everyone knows where we are now. The same place everyone else on this forum is. I have to say, I am sooooo thankful for this forum and all of you. This nightmare would be so much worse without your support.

Thanks again for the thread. It's nice to get to know everyone a bit better.

Kim

 

[vltsra]

Thanks Aussie for this thread! I'll take mine with a bit of milk, no sugar...

My PALS and I have been together for 21 years, married for 13. We married somewhat late in life so don't have kids - it's just the two of us. We have both worked in very demanding businesses (we both own our own businesses) for many years, and were just talking about how we could scale back and do some of the things we both love together. I have been able to do some traveling in the past (love going on cycling trips) but he has never joined me because his business was always more important.

We've just passed the first year since his diagnosis with ALS. Like Lenore, he has what the doctor called a "slow-progressing variant" of the disease, for which I am thankful. He is still able to work but his work involves hand skills, and his left hand is becoming much weaker as is his forearm. I find myself helping him with small tasks more and more, and also am trying hard to deal with his intense frustration and difficulty asking for help. I understand how Kim feels about being angry, this was the time we were supposed to be enjoying together.

I'm just very thankful for this forum, for all of the understanding and support from fellow CALS, and also for the help I've received here in dealing with doctors, knowing what questions to ask, and keeping track of research news. I'm also really really thankful for the PALS who post their stories of hope and are out there doing amazing things. They inspire me and bring joy and hope to my heart.

V

 

[Aussiemndcarer]

Hmm, I drink black usually but love a good Mocha for "dessert". If the coffee shop is in anywhere in Italy or France, I am having espresso

The day we knew it was ALS, which was June 15th, though we were diagnosed June 30th we lost a "perfect" life. My retired husband doing things around the house and for me while I worked a good job and we enjoyed our seven animals and many friends. Neither of us had ever been to a Doctor and gotten really serious news, let alone something like this.

YET, I must say we are blessed. Progression has been there, but very manageable. As we speak, Brian is pushing a snow blower. He can't shovel anymore and often (but not always) walks with a cane, but somehow today at least he can push a snow blower for an hour and a half. I am grateful, usually and we still enjoy many things in life together. We realy try to make our lives NOT be able ALS, which I know is much easier to do when you are not dealing with middle or later stages. Yet I see some amazing PALs and CALs here who are managing to do that regardless.

What I love about this group is we allow each other our pain too. You can come here and yell out that it all sucks and you are in grief for all you had and all you will lose and no one tells you to plaster on a yellow smiley face. Yet you get hope and encoragment here too.

Lenore , we have just past the 30 month stage ( whatever that is!!!) of this journey, and we too spent the early days
After diagnosis wondering if the Dr had got it right. Jim was still so strong. We spent the first 6 months getting our business in order,
And then we decided to disappear up north of our state. We towed a caravan and stopped at the most wonderful beaches & little towns.
It was such a wonderful time together away from everything. Just prior to the formal diagnosis we spent 2 weeks in our Kimberly region, climbing and walking,even floating down rivers.we acted like 18 year olds. I think that we were trying to prove them wrong. I'm so glad that we did that. Such wonderful memories and after all, life is for living! I think Jim climbs a mountain every now and again in his sleep!!

 

[Aussiemndcarer]

Wow! I've had my coffee fix for today. Feel as if I can get through the day. Funny how many similarities we have, Tillie. I savour the smell of caffeine!
Tracy, you are most welcome to visit one day to Aus.
Vtsra, I love cycling too,although my bike has cobwebs on it now!
Kim,so glad you have as brood of grandies,
We are waiting, but our sons are so slow. I always told them to have fun and see the world before kids & that is exactly what they have done! Damn it! Now two of them are back helping us on the farm and in the business. It is so hard for them to take time off and go hunting for a wife!!!

 

[Nuts]

What a wonderful thread. I usually take my coffee black, but do add bit of milk every now and then. I do love my coffee.

We are almost three years in. January 30th, 2014. I've never been one for dates, but that day will stick forever. Matt was the first man I ever trusted completely. Ever. I now count my sons, but they were boys when we met. My knight in shining armor turned unruley boys into fine men and made their mother the happiest woman alive. He also brought me two daughters. Life was not always easy with those four kids, but we stuck it out and they are all four wonderful adults.

We had several years alone together before becoming caregivers to my mom. I remember wishing that I had more time alone with him (we brought her to live with us after she broke her hip, and then we learned she has Parkinsons). Be careful what you ask for--two years in he was diagnosed and a year later I had to call my sister and have her come for mom. I now have that time I wanted--just not quite in the way I wanted.

Matt is a slow progressor, but he seems determined to speed things up. I've lost count of the times he's turned his power chair over--he says it's 8. I know he's speeding things up, but he's squeezing every ounce of enjoyment out of life that he can. My whole life is about him--caring for him and doing what I can to help him enjoy the time he has. It's getting harder as he feels his arms failing, but we will just enjoy what we can until we can't. I try not to look too far ahead.

I am determined to resume my sewing. I stopped the day he was diagnosed.. I have a lovely room upstairs, but it's too far away, so I brought my machine down to the dining room table today. He dosen't understand why I don't want to be upstairs, but that's ok.

OK, my book is long enough. I love coffee, and I'm so happy to have a group to drink it with!
Becky

 

[starente15]

I love my coffee! Daily I take it with an almond/coconut milk cream substitute but I love good pumpkin spice latte around the holidays.

My dad passed on 11/28/15 thirteen short months after his diagnosis. Looking back we now realize he was ill at least a year before but hid it from us. Every day for the past year has been a struggle but we're starting to move forward.

Thanks for starting this thread!

Edited:
Sorry, I just read this is for CALS, not Past CALS! ack!

 

[Purplespider]

If I could, I would order a coffee ( it would be a long black with a dash of milk)
& sit down with a CALS or two and get to know you all a little better.
Sometimes I feel as if I'm losing my identity . Once , I worked in our own business, chaired regional development meetings,travelled a lot and really enjoyed the beach and farm life!i drank wine often with my man and just loved working together building a wonderful property & family.Now I've taken a sharp turn & really don't know where it's leading! What sort of coffee would others drink? Please join me.

The coffee that I liked to drink would be either Starbucks or whatever the grocery store had in stock. I am mainly a tea drinker and I love Earl Grey Tea and other types of teas. I also love to drink Coke when I am super stressed out.

 

[Nuts]

It just occured to me that I wrote about my husband and not myself. I added milk to my strong coffee. I love the Keurig!

 

[JennyC]

I would grab a great big caramel macchiato (I have no idea if I spelled that right)

I was in the emergency medical field until I decided to stay home and raise my daughter, then my husband was injured in combat and I stayed home to care for him and now I have so many of my own medical problems that I can't work. But I am an artist and before my mom was diagnosed with ALS I stayed busy with that.

2016 has sucked donkey butt for me, I would name EVERYTHING that has happened which is sooooo much but when I do that it feels like it sounds like I am looking for pity, which I'm not , just stating the facts. So I will stick to the worst of the worst. Cousins son had cancer, uncle diagnosed with cancer-in fact he is being transported back to the area from Mass Gen right now so I will get to see him tonight, he wasn't supposed to make it through last Monday night so we are really close to the end, dad broke his back, mom diagnosed with ALS, I had brain surgery and the next day my Gram died. I would like to say 2017 is going to be better but my mom will likely die before the first half of the year is over as her ALS is super aggressive it seems.

I just turned 38, I am married and have a nearly 12 year old daughter, we have five dogs, three cats and I volunteer on a mini horse farm to help groom.

 

[scaredwifetx]

I am actually sitting with a cup of hazelnut coffee while I am reading the posts on this wonderful thread.

I am almost 56 and Steve is 64. We met 17 years ago. We were both divorced and had adult children. He has two and I have three. Meeting him was the best thing that ever happened to me. I had very little trust in men...which stemmed from years of bad experiences...dating back to childhood. Steve was gentle, kind and let me be as independent as I needed. He moved three times in ten years with me...due to my career.

We have 7 Grandchildren between us. Not one of them live within five hours of us. I so miss my two grandchildren as they are truly...my happy.

Steve was diagnosed 08/2015 and my mother died in Feb 2016. She loved with us for five years and Steve took care of her while I traveled. We didn't 3v3n know she was sick and died within two weeks of cancer diagnosis. This has been a tough year for me but I have grown so much through this all. I now know that I have to take one day at a time and live in the moment. Steve's progression is another example of not knowing exactly how things will go and that there is no order with ALS. He seems to progress rapidly for a while and then is stable for a while.

I am so very fortunate to find this forum and all of you. I can truly say that I couldn't have made it to this point without all of you. I have never seen so much love and compassion. I think of you all often and feel like you are members of my family.

Wouldn't it be great to meet up for a cup of coffee or tea?

 

[KateEmerson]

Thank you Aussie for opening our own coffee shop we can go all go to no matter the time or place to have a little chat with friends who understand. I would like to order a very dark French roast with a little cream, one of my great pleasures in life. My husband Job and I have been married 36 years this month. I retired early( he is 17 years older than me) and I am so glad I did. We had a few years to do some of the things we each had wanted to do, two cross country RV road trips and a number of singing tours around the world for Job, horses and art for me. We are so fortunate that we were able to have this time together to do these things before ALS presented itself. He presented with complete respiritory failure ( trached and vented 24/7 ). That was September 5, 2013 and since that date we have basically been homebound so having a place to go and meet new friends is wonderful. I understand your feelings of loss of identity but am trying to think of this expierence as adding to who I am that I never knew I could be.