Old 03-31-2016, 09:12 AM #16 (permalink)
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Default CALS Roll Call Continued

I haven't checked in for a while...the forum was giving me problems but all seems good now. Chris had an appt at the VA in Tucson yesterday. He was treated so well by everybody! We met with the spinal cord injuries and disorders team and were quite impressed. Chris also met with a tobii rep who was blown away by Chris' ability to navigate the eye gaze software. They placed an order for Chris to have a tobii since he has lost so much of the use of his hands. Chris is a computer techie kind of guy. He really enjoys programming and is excited about being able to use his eyes to continue working. The team also has a social worker to help folks navigate the VA system, and a mental health specialist. We go back in a few weeks and will also meet the OT who specializes in vehicle adaptations. I am amazed and grateful that the VA is taking such good care of us! I say "us" because the team made sure to include me in all of the conversations. Kathleen
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Old 03-31-2016, 12:33 PM #17 (permalink)
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Smile Re: PALS roll call Wednesdays ( or whenever)

Hello,
1st roll call from this quarter, my honey is living with ALS, and I am trying to be whatever I need to be to make it easier for him. We are about 1 year and 4 months since diagnosis, our lives are constantly changing, as everyone else here may know. I will try to post next week. Share a smile, even if it hurts it may help someone else
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Old 03-31-2016, 02:04 PM #18 (permalink)
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Default Re: CALS Roll call

Welcome Nealbob, I'm sorry you have to be with us, but do come on in and chat!

@sunny that is wonderful news about the eyegaze - communication is just so important and your hubby is going to nail it by the sounds

@Janis those visits are priceless aren't they - the connection and the ability to laugh and call up fond memories that are shared ... encourage them visit again as often as is practical
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Old 03-31-2016, 06:35 PM #19 (permalink)
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Default Re: PALS roll call Wednesdays ( or whenever)

G'day everyone! Hope you all enjoyed Easter . We are getting on with life,and celebrating small achievements. I felt good yesterday as I mastered using a hoist chair to shower chair! Previously I had only used it bed to chair. Getting more confident by the minute!!! Sun is shining here after a damp Easter where we couldn't go outside too much. We really miss the sun when you have to stay inside because of cold weather. Made me think of all of you in the northern hemisphere where it gets really cold! Hope you keep nice n warm ?
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Old 03-31-2016, 11:52 PM #20 (permalink)
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Default Re: CALS Roll call

Late check in. Good week just very busy. Steve had a swallowing study. The doctor spoke with him and had him do a couple of speech movements and told Steve that it wasn't time for a feeding tube. The doc just told Steve not to eat chicken, steak or anything that he chocked on. I am staying busy at home and work.

Tillie, so sorry about Easter week. I know how tough it was for you and hope this week is better.

Autotelic, You are in my thoughs and prayers this week. Glad to hear you had some help Janice.

Buckhorn, you are so right about the Zoloft. I am sure I would be two nuts away from crazy right now.

You are all in my daily thoughts and prayers.
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Old 04-01-2016, 10:37 AM #21 (permalink)
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Default Re: CALS Roll Call Continued

"Buckhorn, you are so right about the Zoloft. I am sure I would be two nuts away from crazy right now.?

HeeHee, you are all one Nuts away from crazy at all times

I saw my chiropractor Wednesday, forgetting that I had a hair appointment. I feel much better and will go groveling to my hairdresser with payment for a missed appointment that she will not want to take. As long as I can...

I'm planning a six day trip to visit my mom next month. I found a week with no appointments and am just going to do it. I figure honey can talk his brother and SIL and our girls through anything they don't know already, so I'd better get it done. Sleep will be good... I backed the truck into the garage door yesterday (didn't realize it wasn't full open), scratching up the bed cover and tearing up the bottom the the door. I noticed this morning that the metal strip fell off while I was out getting my sweetie the ham biscuits he was craving, and tire tracks go over at least one screw that was pointed upwards. I'll go out later and see if I have flat tires. Here's to ALS--I'm not even upset. It's just tires. They can be fixed. I don't care. I do hope the door can be straightened out--it's a nice door, insulated, and not yet two years old. Sigh. But it's just a door.

I hope I keep my health through this, because I think I'm going to be a very different person and look forward to shocking my friends and family one day. It won't make up for losing my love, but it will help with moving on.
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Old 04-01-2016, 05:54 PM #22 (permalink)
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Default Re: CALS Roll call

I did as you suggested Laurie and reduced oxygen and pressure, and had a positive response. He is much improved, especially in the afternoons. Thank you for your help!

Mornings are rough. He does better with our helpers than he does with me. He's cranky (which is fine. I would be too) but he's also a bit suspicious and paranoid and that's been harder to manage. It's just been the last week or so and it does get better as the day goes on.

That's it for me. I mainly just wanted to say thank you for your help and let you know he's doing better.
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Old 04-01-2016, 08:23 PM #23 (permalink)
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Default Re: CALS Roll Call Continued

Checking in late as well. Hold your heads high ladies! You aee doing your very best under difficult circumstance.
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Old 04-01-2016, 09:47 PM #24 (permalink)
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Default Re: CALS Roll Call Continued

Hi All. Not sure How this Roll call Works but here goes nothing. We are going into year 5 of my wife's ALS.. Been navigating the Bumpy Road together along with our 2 kids.. Still new to posting and sharing my story as A husband father caregiver so bear with me.
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Old 04-01-2016, 11:52 PM #25 (permalink)
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Default Re: CALS Roll Call Continued

Hi there StayingStrong - welcome! None of us really knew how this "sharing" / etc. works or worked to begin with. Just just jump in here with us and wing it! Very supportive, encouraging folks frequent this forum. I am relatively new here myself, but have found support, camaraderie, a place to vent / commiserate, etc. We will all definitely bear with you! Please come back and ask questions, share with us, express your fears and frustrations, etc. Many here will try to give your opinion, and when all else fails, give you a shoulder to lean on and cry on and understand you in a way many others in your life cannot. Take care!
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Old 04-06-2016, 12:16 PM #26 (permalink)
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Default Re: CALS Roll Call Continued

Wednesday and saying hi to all my fellow kings and queens. M continues to do well and has returned to the gym and driving. We are both dealing with the care of his 92 year old dad. He lives in an assisted living community but he and I talk at least 3 times a day and I visit several times a day. Occasionally the 3 of us go out to dinner. Usually at 5, because we are quite a sight. Bud, M's dad has Parkinson's and arthritis. He is walker dependent, shuffles and really can only look down. He is deaf. So first I get the walker out and Bud on his way. Next is getting M's zinger out and him in it. Now we are a rolling parade. Once at the table, Bud cannot understand/hear M and M cannot understand Bud. So all conversation goes through me. Bud uses a bib and often wears his meals and M coughs frequently. Luckily they are both wonderful men who are most appreciative. And a good time is had by all.
Spring refuses to come and May flower sprouts have been given a rude shock with 8 inches of snow and freezing temperatures. That is the news here.
Anna
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Old 04-06-2016, 04:20 PM #27 (permalink)
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Default Re: CALS Roll Call Continued

Good Wednesday to you all!

Anna, your description of taking M and Bud to dinner had me in stitches. I remember the last time to took my husband and mother out to eat and swore I'd never try again. They were both walking, but barely. ALS was robbing him of his stability and Parkinson's had done a number on her. I just knew I was going to lose one of them! She is now in assisted living in another state and my sister and BIL are on the daily visit schedule.

Strong, welcome. Year five with two young children--you need a crown now. Start thinking. King of What? Don't worry about how things work--just jump in.

I finally made it to the dentist today and am being referred for evaluation on two teeth for possible root canals. I've been drinking warm water and suffering agony when I eat and drink, so I'm almost looking forward to it. Good timing--the great insurance we have thru hubby's work will go away this year, so I told the dentist to set up anything he thinks might need to be done.

Spring keeps beating back winter; apparently we are in for another cold dip this weekend followed by what I hope is the final warmup. Even cold it's beautiful.
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Old 04-06-2016, 09:25 PM #28 (permalink)
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Default Re: CALS Roll Call Continued

Wednesday greetings!

We're having gorgeous weather right now and Douglas is still in high spirits. We're both looking forward to a daughter visiting this weekend. Last week we were told that his PWC would be delivered this week but now it's scheduled for next Tuesday, about the time the rain is expected to return. Meanwhile he had a great lesson today on using a loaner eye-gaze computer; he is primarily interested in using it for web searches and email, but I'm looking forward to him getting comfortable with the speech generator so he'll be ready to use it when he becomes too difficult to understand.

Janis
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Old 04-06-2016, 09:40 PM #29 (permalink)
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Default Re: CALS Roll Call Continued

i just wanted to reach out to my CALS family and say thank you for your support over the past months. my dad had been suffering from ALS for 7 years but i only found this forum a few months ago. my dad passed in February and I'm just bringing myself to be able to reach out now. its been impossibly difficult in so many ways over the past years and especially these past 2 months with out him. however, all of you, either those who directly helped me or those who've shared their experiences, made this a little easier. we're now trying to piece our lives back together as best we can. in lieu of flowers we asked family and friends for donations. our goal is to be able to help others' (particularly caregivers) families get through the battle. so my last question for you all is- if anyone knows of organizations like that or have any helpful info i am all ears (please email me, its hard to read the forums sometimes- <Personal email address removed by Moderator> i pray for any and all of you who are suffering along with your PALS (past and present). one day this awful disease will be ended and not one more person with have to know any of the struggles of this disease. God bless you all and always cover you in love.

stephanie
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Old 04-06-2016, 10:33 PM #30 (permalink)
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Default Re: CALS Roll Call Continued

Weds already?

It has been great weather in Dallas and not much in the way of changes with Steve. It's me that I am not so sure about right now. I seem to be the one with the most changes. I have read a lot of posts but am normally to tired to post much. So thankful for all the wonderful CALS who help so many of us and spend so much time doing so.

I enjoyed reading this weeks posts. Thanks Anna and Nuts. Reminded me of the last time I took my mother and Steve out to eat before my mom passed away.

Wishes for us all this week. I hope we all have a beautiful spring week!
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