Old 04-27-2016, 08:33 AM #76 (permalink)
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Default Re: CALS Roll Call Continued

Thank you Steph for the reminder. I try to set aside time for me and Chris to just "be" and it is always a helpful way to start the day. Becky, feeling for you with the loss of a day and energy. We are three hours from Tucson where I had an endo appt last week. The doc called to tell me she was sick and wouldn't be in the office. Unfortunately she called my home phone (even though they had my cell number) and left a message but we were already on the road. Sigh. Gem, sounds like something that would easily happen in my life. Chris and I once went to an event separately(45 min from home) because we were meeting after work. I accidentally took his keys and my keys when I left to come home. I didn't have a cell phone back then so he had to wait for me to get home and then go back. lol Your wood fire sounds so lovely and cozy. I am envious.
We were at the VA clinic in Tucson all day on Monday. My fitbit said I walked over 3 miles while at the clinic, pushing a wheelchair. Chris can still walk but not very far without becoming fatigued. Again, I can't say enough about how wonderful his team is. They will have him back soon for driver's training using a spin knob on the steering wheel. They want him to have a cough assist and suctioning device so we get training on those next visit. And so it goes.... Thank you everyone for being here and sharing. It is tremendously helpful. Take care, Kathleen
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Old 04-27-2016, 10:46 AM #77 (permalink)
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Default Re: CALS Roll Call Continued

Feeling a little more stress than usual. Birthday week for my PAL and I almost always disappoint. Wifie likes to eat out which has become more difficult but I think I will take her to somewhere nice. Any other ideas would be nice to hear. Found out my daughter has mono a couple of days ago, son is home sick from school today, and between the 2 boys we have 9 baseball games in the next 5 days. Hopefully ol dad will be able to take momma to a couple of games. Every day is in spincycle...Thank goodness we have a lot of family support.
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Old 04-27-2016, 12:10 PM #78 (permalink)
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Default Re: CALS Roll Call Continued

This is my first post. Have read many post, and feel I know some of you already. My husband is "preacherman" and has shared his story. We have been trying to get to the root of his problems and finally got the new is ALS about 2 weeks ago. The diagnosis was not unexpected, but there was still hope of some other cause. With that came both the deep sadness and the feeling of...finally..we can plan.
What is so sad to me is that he has had symptoms for about 3 yrs. he is in denial about his progression and it is hard to get him to focus and plan.
He has Bulbar symptoms as well as the start of FTD. My work keeps me away from home for a week or two at a time. Needless to say I worry myself sick when gone. We need my health insurance at least until VA kicks in.
I am not sure if roll call is the place to introduce myself or not. And I did not mean to share so much.
So many of you have touched on topics, feelings, and questions I have had.
Sorry to hear about Max. I find hope that I can endure when I read gooseberry talk of Steve....you are in my thoughts. Atsugi thanks for all the great info. There are others too. Thanks for you courage and support.
Kay
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Old 04-27-2016, 02:26 PM #79 (permalink)
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Default Re: CALS Roll Call Continued

Happy Wednesday!

Our youngest daughter was here again two weekends ago and Douglas's sister this last weekend. Douglas continues to be fairly happy and I've had chances to go out and do my own things: a spinning class (making yarn with a spinning wheel) and helping out at my weaving guild's big sale, both of which involved lots of time talking to friends. We now have his PWC and an EZ-Lock in the (used) converted Toyota Sienna so we're ready to roll but haven't really used either yet. We have more friends and family coming to town in the next few weeks so I'm looking forward to life continuing to be about as good as we could expect, given his ALS.

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Old 04-27-2016, 02:29 PM #80 (permalink)
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Default Re: CALS Roll Call Continued

I made it through last week.

@Nuts fingers crossed the injections work, and your teeth stay strong now

@Gem - too funny about the keys, though it could have been a problem, but so easily done! Not cold enough for a fire here yet, but the persistent humidity has finally eased off. It sounds like you are nearly ready to move into your house, what a wonderful accomplishment!

@gooseberry tells the truth of course. It often seems too hard to think of ourselves when our PALS have so many needs, but it's critical.

@sunny I'm so glad you find your clinic team so good, it can make a huge difference. Walking 3 miles at clinic is a great get fit plan don't you think

@matadog I hope you wife really enjoys going out to eat on her birthday. Birthdays can be really tough as we want to do something nice for them, but it's like another reminder of what we can't do. Wow, between sick kids and baseball you are one energiser bunny!

@kmarie - a big welcoming hug and I'm so sorry you have joined us. We will support you. Please feel free to start your own thread at any time to have a dedicated conversation on any topic. But chime in here as well too of course!
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Old 04-27-2016, 07:09 PM #81 (permalink)
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Default Re: PALS roll call Wednesdays ( or whenever)

This is the first time for me to post in the roll call... I'm here and glad to have all of your support!
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Old 04-27-2016, 08:18 PM #82 (permalink)
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Default Re: CALS Roll Call Continued

Morning! One day late, but still I really love this forum for all your warmth in your posts. Thank you everyone for making this journey not a solo one!
Gem, I had a laugh about the keys!! Seems to be a problem around here too. I'm always misplacing keys and now I can add battery charging to my list of "to dos". The battery on our hoist died just as I was about to put Jim to bed last night. Luckily he wasn't left swinging up high! We had only just started to crank it up....all of our boys were in bed,so we just sat and chatted until we got more charge. Precious moments,bought on by potential disaster. My pal can still talk me through so many things,and remind me of so many things too. I hope he keeps talking for a while yet. My mind has never been as sharp as his. Our week was difficult,as it has turned really chilly here. We took until 2 pm to get ready to go out the other day,only to find that our vans battery was flat. We missed our short window to get out and about. Damn. So you can see what I mean about batteries!!! I'm going to charge the electric wchair next and oh most importantly, the back up batteries for our bipap machine. Can anyone tell me what a trilogy is?
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Old 04-27-2016, 08:29 PM #83 (permalink)
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Default Re: CALS Roll Call Continued

Hi aussie, oh dear, you have been given all the battery reminders you should need! Good to see you checking in!

Trilogy is a brand of bipap machine that has the ability to also be hooked up to a trach and work as a ventilator.
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Old 04-27-2016, 08:52 PM #84 (permalink)
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Default Re: CALS Roll Call Continued

Matt, I'm sure you've thought of this, but if getting out is difficult and more so w/ the sick kids, you could get a caterer or restaurant to prepare some of her favorite foods for pickup and decorate your home/have music playing/sung by any healthy family members in that theme.

Sounds like several of you have had plans, appointments and keys go missing. Hope this weekend/next week finds you connecting more dots!

Best,
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Old 05-04-2016, 09:26 AM #85 (permalink)
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Default Re: CALS Roll Call Continued

Hello , just checking in. I spent all day thinking it was Tuesday when in fact it was Wednesday here in Aus!
I'm going crazy! Seriously, sometimes I seem to be so busy but get nowhere.Toileting, showering, and simply transferring takes up a lot of the day.we watch television together a lot, but where has my time gone for all those things I was going to do......?
Early in our journey, we cleared off and took a long holiday, I took long walks along beautiful beaches, we fished and explored. Now,these memories are so precious, we often recall them when my pals is waiting for me to hoist him up, or when patience is required! I really hope that you all have lovely times to reflect on? My challenge now is to keep hope for the future.Difficult! It's MND week here in Australia. Lets hope that there is a cure for this beast soon,
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Old 05-04-2016, 10:41 AM #86 (permalink)
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Default Re: CALS Roll Call Continued

Hello all, my PAL has had a new PWC but doesn't like to use it and we use a compact wheelchair most of the time. She loves to get out with certain family and friends that she feels comfortable with. I have been nervous with the ladies helping her get around. I can muscle her around but I know it's not that easy for some of our helpers. Well, my wife is finally opened to getting a van. I will be releived that everyone can safely get her aound rather relying on my superior brute strength. hehe
We have our eye on a van that should work out. It may need some modifications as a family friend who was paralyzed in the lower body used it and drove it. Hopefully next week we can have it in place. I feel blessed that we have family members helping with the cost and modifications.
It's ben rainy here, a whole lot of baseball rainouts...
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Old 05-04-2016, 10:45 AM #87 (permalink)
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Default Re: CALS Roll Call Continued

Sitting at the hospital waiting for a biopsy. Otherwise doing okay
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Old 05-04-2016, 10:59 AM #88 (permalink)
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Default Re: CALS Roll Call Continued

Hoping for negative results, Steph!

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Old 05-04-2016, 11:13 AM #89 (permalink)
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Default Re: CALS Roll Call Continued

Another Wednesday. M and I spent the weekend in Baltimore celebrating our grand daughter's first birthday. M plagued with painful left hamstring and adductor spasm despite recent Botox injections to those muscles. Traveling is getting a bit more difficult wit M's progression but we had a good weekend. It is good to be back home. Weather continues cool and rainy and the weeds are gaining on me.
Hoping for negative biopsy results Steph
Thanks for the continued Koalas and getting through your rough week Tillie
May your upcoming week be wonderful kings and queens.
Anna
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Old 05-04-2016, 02:51 PM #90 (permalink)
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Default Re: CALS Roll Call Continued

@Aussie, you didn't do so bad, I've woken up now, Thurs morning, seen you post and I'm like ... ummmmm

I had a better week, but this week would have seen our wedding anniversary, and for a dear past CALS girlfriend that lives fairly close to me that same day is the day her husband was set free.

So I'm nearly past the run of big dates once again. avnl, yes the koalas help a LOT.
Aussie we have our walk to d'feet MND coming up in 2 weekends time. I organised it all last year, but this year someone else has taken it on and I've just helped with some of the background stuff.

@matadog - that is wonderful news about the van! I hope it expands things for her and that she starts to use the PWC. What is her resistance to it?

@gooseberry - negative is an order!

@avnl - gorgeous granddaughter, take every opportunity to do something and travel that you can seems to be some of the best advice here!
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