PALS ROLL CALL NEW THREAD (PALS ONLY) Wednesday if possible or whenever

KimT

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After today, we're supposed to get rain. I'm planning on a pool day.
Tomorrow I booked a facial. She is also a massage therapist so will to a lot with my neck and shoulders. I lifted and bent too much last week and am paying for it now.
 

KevinM

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I’m looking forward to some rain here in Tally, Kim. It’s been brutally hot with not a lick of rain for a while. Afternoon rains soothe me, and my afternoons are the toughest. My wife is back teaching special needs kids, and I’m here with the pets and my dark thoughts. I can stay distracted through lunch, but too hot to do anything outside in the afternoons. We have a pool here at the house, but even a quick dip doesn’t help my spirits.

Also, still hoping that some the posters I mentioned last week are okay. I miss their participation. Kevin
 

KimT

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Kevin,
I wish you were closer so I could visit with you. Cloudy days have always depressed me but I've suffered with clinical depression long before ALS took over. Remeron helps a great deal plus an added bonus is that it puts me right to sleep at night.
I'm a good listener if you ever want to talk.
 

lisa g

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I'm right there with Kevin and Kim, the weather this year in Florida has been just brutal. Hoping hurricane season starts to die down so we can leave for Ohio for a couple of months.
Just got back from doing my volunteer work at the cat sanctuary. That always lifts my spirits. Other than that it's just another day.
 

KarenNWendyn

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After over 2 months of not exercising and mostly camping out in my recliner following G tube surgery, I have finally started working with a physical therapist on pool exercises. I was stunned at how much strength and functionality I’ve lost. Being in the water feels so good. I’m hoping I can get back to the pool at the YMCA after my PT ends. It’s up to my CALS to take me, and she is so stressed with the ever-growing laundry list of things she has to do for me, large and small.
 

KevinM

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PALS
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06/2019
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Kevin,
I wish you were closer so I could visit with you. Cloudy days have always depressed me but I've suffered with clinical depression long before ALS took over. Remeron helps a great deal plus an added bonus is that it puts me right to sleep at night.
I'm a good listener if you ever want to talk.
I wish we were closer, too, Kim. I’d like that. I’ll send a private message with my phone number if I can figure out how to do it! I’m still a long ways from acceptance, and caught in the doo-loop of fear and anticipation. Just started with medical MJ, so we will see if that helps calm me beyond the trazedone and occasional Ativan. I sleep really well, it’s just the waking hours that eat at me.
 

KevinM

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Messages
77
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PALS
Diagnosis
06/2019
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US
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FL
After over 2 months of not exercising and mostly camping out in my recliner following G tube surgery, I have finally started working with a physical therapist on pool exercises. I was stunned at how much strength and functionality I’ve lost. Being in the water feels so good. I’m hoping I can get back to the pool at the YMCA after my PT ends. It’s up to my CALS to take me, and she is so stressed with the ever-growing laundry list of things she has to do for me, large and small.
I’m so sorry about your loss of strength Karen. My thoughts are with you every day. Kevin
 

KarenNWendyn

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I’ll send a private message with my phone number if I can figure out how to do it!
Kevin, if you have posted enough times on this forum (I think it’s 50 posts, though it may be higher), you can start a private conversation with someone either by clicking on the little envelope icon next to your profile name on the top of this page, or by clicking on their avatar to find a little box that says “start conversation “. If those things don’t work, then you may not have enough posts. In that event, you can send them a post on their profile asking them to private message you. We ask that people don’t put their phone #or email address in profile posts, just in private messages.
 

KarenNWendyn

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Just started with medical MJ, so we will see if that helps calm me beyond the trazedone and occasional Ativan.
Kevin, I’m sorry you’re struggling so much. Also consider seeing your doctor about an antidepressant (SSRI, SNRI) because they also have anxiolytic (anxiety-busting) activity, and maybe seeing a counselor for grief counseling and for cognitive behavioral therapy. Trazodone is great for sleep but not as great for anxiety and depression.
 

KevinM

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PALS
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Kevin, I’m sorry you’re struggling so much. Also consider seeing your doctor about an antidepressant (SSRI, SNRI) because they also have anxiolytic (anxiety-busting) activity, and maybe seeing a counselor for grief counseling and for cognitive behavioral therapy. Trazodone is great for sleep but not as great for anxiety and depression.
Thanks Karen, I initially tried Zoloft but had unpleasant side effects. I’ll talk with my PCP about alternatives to Trazadone ( although I really value its ability to give me a peaceful 8 hours). I’ve scheduled a consult with a local counselor that another ALS patient sees, so I’ll report back on that. Bottom line is we all struggle, and I’m still trying to find a way through the weeds, even at this early stage.
 

KimT

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Kevin,
I couldn't take any of the SSRIs. The side effects were horrible. Remeron helped with both anxiety and depression. GPs usually prescribe an SSRI because they are so common and there are quite a few of them. I tried them all until I went to a psychiatrist and he immediately knew that Remeron fit the anxiety and depression. It also increased my appetite but that was a good thing because I was very underweight when I was depressed.

Karen,
When I sprained my ankle and couldn't get around at all for nearly six months I thought I'd lost all my strength. The pool helped a lot. I'm hoping it will help you get back a little and I know it will be good for you mentally.
Can your CALS get some help for things like errands/groceries and the other things that take up time? I don't want her to burn out. I had a lady who came in and cooked twice a week until I started ordering meals delivered weekly. I feel like it might be time to get someone in to do laundry, change my bedding and run a few errands each week.
 

mytmouz

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Joined
Aug 17, 2019
Messages
20
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
Spent the morning with the vendor for my custom power chair, and other home necessities to decide what to get and when to deliver. Then spent the afternoon dealing with the billing department here at the PT facility, as they were freaking out over my insurance lapsing at the end of the prior month. My Cobra information was mailed today. Took care of it online, and calmed down the pack...
 

beauty4everyone

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Jul 5, 2018
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153
Reason
PALS
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04/2018
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Ville
After today, we're supposed to get rain. I'm planning on a pool day.
Tomorrow I booked a facial. She is also a massage therapist so will to a lot with my neck and shoulders. I lifted and bent too much last week and am paying for it now.
Hi, Kim Wow - rain to replenish the earth; pool day frolicking and floating in the water; a facial to be pampered and prettier; and a massage to be physically and spiritually uplifted. I can see it in my mind's eye. Bask completely in each moment as if it's the only moment. Be fully present, ignoring everything else. May each moment lighten your spirit, renew your strength and bring you joy ! May blessings abound. Beauty
 

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KimT

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I got the facial and came home to sunny skies. After lunch the sun was still shining and the pool was 89 degrees so I headed out. It was a big social event (for me) as there were about 10 other people in the pool. We all know it'll be raining soon and we won't know when our next dip will be. I was shocked to hear the ocean temperature was 84 today. That is unheard of for September. I can't do the ocean because I don't have enough strength and, frankly, I feel bad because I used to run/walk the beach every day.

I'm pretty sore from not paying attention to my body in the pool but will take it easy and get a good night's sleep. If I'm still in this much pain tomorrow, I'll take 1/4 of an Oxy after lunch so I can play cards.
 

CTMary

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May 17, 2019
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7
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PALS
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09/2016
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CT
Well today is my 3 year "anniversary" of diagnosis. Yahoo! Lower onset to paraplegic ,trouble swallowing many things, voice changed but there, sleeping a real lot and that's scary. At home on Hospice they have been great. This typed by my cals who fainted, then ambulance ride to ER overnight for exhaustion and dehydration come to find out after MRI 2 CT scans, 1 with iodine contrast for vessel view, blood, urin, and echo- cardiogram. Meanwhile I have a wonderful daughter in law and 12 yo granddaughter trying to care for me. When Wayne played fainting goat he left me in my ewh and the girl's can't lift me, so pee time my big strong son came, lifted me while closing his eyes, daughter pulls down pants and granddaughter exclaims " wow nana has hair on her yohoo " 🙈🙉🙊. Hope I got a laugh. Have a nice day.
 
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