PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

KevinM

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So good to hear from you Steve. Four weeks, man...that’s something. We all look forward to your tales of adventure!

What a bad break, literally and figuratively, for Lori. And right at the end of the trip, too. I agree this can be serious, so please tell her we are thinking of her and you as well. No sudden movements, Lori! Best, Kevin
 

blitzc

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Apr 20, 2018
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PALS
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01/2018
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OH
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Massillon
Such an amazing trip, Steve! Please send my wishes for a speedy recovery to your wife! Nothing worse than a caretaker getting injured. I'm dealing with my husband's sprained ankle...although he suspects a fracture that didn't show up on the x-ray. It's difficult for him to take care of me and my transfers with pain.

Having breakfast with our dear forum member Lisa tomorrow. Wish you could all be there.
 

wmilo

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Jessie, I'm so sorry to learn that you are struggling so. Thoughts and prayers for strength and comfort.

I got a call today from the DME stating that they can deliver a lift on July 1st. That will make things easier and safer for us.

Still losing arm strength, but my CALS is good about feeding me when needed.

Best to all,
 

KevinM

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PALS
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Bill, I’m taking that to mean “when you need a little help,” not “when you require sustenance.” I assume you got the”when I need sustenance” part covered. 😊

Although I will say that over the years my wife has denied me certain life enriching “treats” when she’s angry with me...take that as you may. K
 

blitzc

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01/2018
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I spent Tuesday on the computer having zoom calls with Ohio's Senators and Representatives to help Advocate for ALS on several pieces of legislation:
  1. FY 22 Appropriations for new and increased funding for ALS research
  2. Promising Pathways Act CREATE a new provisional approval pathway that will accelerate access to promising treatments, INCREASE FDA flexibilities to approve promising new treatments for serious diseases like ALS that have no meaningful treatments, and EXPAND access to promising treatments before final FDA approval
  3. Accelerate access to critical therapies for ALS ACT would FUND access to experimental drugs, ACCELERATE drug development by increasing clinical trials with FDA grants, CHARGE public-private partnerships with speeding development and approval of new therapies, COMMISSION an FDA Action Plan to support drug development and access to experimental drugs.
  4. CONNECT for health ACT would CHANGE Medicare law permanently to allow telehealth after the pandemic, PROVIDE telehealth in the HOME and OTHER locatio, AUTHORIZES HHS to waive telehealth restrictions on what SERVICES can be provided, and PERMITS HHS to determine which CLINICAL SITES and PRACTITIONERS.
Please take the time to contact your own US Senators and Representatives and ask for their support based upon how ALS impacts your daily life and how these pieces of legislation can make a difference to you and others living with ALS as well as their families.

On Wednesday, my husband, Marc, and I enjoyed breakfast and time with Lisa and her husband. Such a wonderful opportunity!!! Anyone want to come have lunch, dinner, or a drink? I'm up for it!!!!
 

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lisa g

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Apr 17, 2019
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406
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PALS
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04/2019
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FL
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Fort Pierce
Great picture Cathy, but I think we need to clarify the expressions on our faces. Right before the photo was taken Cathy's husband made a comment that put us into hysterics. It was hard to keep a straight face.

My time in Ohio is winding down, time to go back to Florida and my pool 😊 Ohio is beautiful this time of the year, I wish the winters were the same.

We did get some bad news the other day. My beautiful cat which I use as my avatar had surgery last week. Unfortunately it has come back positive for cancer. We were told that it was aggressive and would come back. The only option we would have at that point would be amputation but with no guarantees. We're keeping our fingers crossed that it will be a while until it appears again.

Steve- your trip sounded amazing, hope to see some pictures posted soon. Hoping your wife makes a speedy recovery.

Jesse- Keeping you in my prayers daily. Sending 🥰 hugs your way.

Bill- hoping the hoyer helps.

Eric- enjoy Yellowstone. Pictures please.

Al- hope the tailbone is on the mend and the pain diminishes.

Until next week hope everyone has a good week.
 

KevinM

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PALS
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06/2019
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Tallahassee
Hi everyone. Another sad week as two more beautiful people and long time forum members left us. I hope as many as possible can check in, and tell us of any holiday plans with loved ones. Best, Kevin
 

wmilo

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Overcast and rainy here.

Looking forward to the lift delivery tomorrow.

The neighbors are having a picnic to celebrate their daughter's third child (on the way). We'll have to see if the ground is too soft for my PWC.

Best,
 

swalker

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Joined
Dec 11, 2014
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DX MND
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07/2014
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Vail
I am doing well as I continue to rest and recover from our big trip to Yellowstone and the Tetons. We enjoyed the trip very much, but it has been nice to be home.

Sad to see some of our members passing. I have seen way too many fine PALS go over the years. It has been a blessing to get to know them.

Steve
 

EricInLA

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01/2020
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CA
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Los Angeles
Hi friends - Had a nice trip to Yosemite with family and friends. Still able to climb the Mist Trail to Vernal Falls - that lifted my spirits. I told my family I didn't need anything for Fathers Day, other than to hike with my boys in Yosemite. That's what I got, and it was so good. It was really hot though. Crowds were not too bad, surprisingly.

Not much else to report. Enjoying the summer here in SoCal. Looking forward to 4th of July, though not sure what we will do. The normal gatherings we have for that day are cancelled, still due to Covid even though we seem to have emerged from that darkness. Hope everyone enjoys the holiday.

Eric
 

[email protected]

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Jan 3, 2016
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296
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PALS
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11/2015
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Iowa
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Iowa City
Yes, a sad week. Nothing special planned for the 4th. The IC Jazz Fest, our usual 4th event, has been scaled way back, but they are still having a try. Daughters and families visit in August. Got my hospital bed from the VA yesterday. Getting used to it but slept well last night. It has features to minimize pressure sores and firm up to allow safe transfers. 40" wide so ample dimensions. My younger daughter born on the 4th used to think the fireworks were to celebrate her day (that didn't last long).

Ed
 

wmilo

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DME called and said someone called off so no lift today and next possible date July 22. :(
I told them my tale of woe and they will "look at the schedule and see what they can do." Because they are doing this for the ALS Assn. they don't get paid as much so I can't complain too much but it is a disappointment.

Eric, I understand about hiking the Mist trail. Before I was DXed I was having balance and ambulation issues, and we visited Rocky Mountain National Park. There is a trail from Bear Lake to Emerald Lake that is moderately difficult and which we had climbed in the past, but I didn't think I could make this trip. About a third of the way up my wife turned back, and I decided to continue. Somehow I got a burst of energy and found myself trotting on portions of the climb up, and much of the way back. I considered it a huge blessing and it remains a very happy memory.

Best to all,
 

blitzc

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PALS
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01/2018
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US
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OH
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Massillon
I was originally excited to come post here yesterday until I started to read your comments and my heart sank...I knew it was news of Jessie. I hadn't realized how tough it was getting for her until she mentioned the second round of hospice with a message of goodbye to us all. And now the passing of Wynn as well...tequila and Queen...good for him.

I did have good things to share: a birthday for me celebrated with neighbors, family, and a dear friend. My son also just accepted a job as a product design engineer in the electric vehical division of a company located about 30 minutes away.

But now I am filled with emotions for the friendships developed here. You folks all have such a dear place in my heart. When my family and friends don't get it...you all understand. Thanks for helping each of us!
 

Fusia

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Oct 26, 2019
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PALS
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08/2019
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MT
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Big sky country
I'm enjoying hearing of both recent and past adventures in our various National Parks - Yosemite, Yellowstone, Rocky Mountain - all beautiful places (along with all of our other national and state parks).

I've had a full three weeks. My two stepdaughters came to visit for four days. I'm not particularly close to either of them and have not seen them in almost 3 years - they last visited about one year before my husband (their father) died. I was able to have a frank talk with them about my plans for MAID and about my will. So, it was good to get that checked off my list. Last week, three very good old friends visited for the week. We had a great time, did a few "hikes", reminisced, and shared a lot of laughs. I loved having them here.

Earlier this week I had an episode that landed me in the ER. I don't remember several hours, but I called my caregiver to tell her I was confused. When she got here a few minutes later she found me on the floor. She called 911 for a lift assist, but when they got here they insisted on transporting me to the ER since I was nauseous. They think I might have had a minor heart attack or some other heart "event". Yikes! I didn't let them do any further testing at the ER and don't plan to pursue it. They also believe I ended up with a mild concussion when I hit my head when I went down. I also have a VERY sore shoulder.. So, the last several days I've been taking it really easy, no screen time, working extra hard to stay hydrated. I do have some dizziness - not sure if it could be the concussion or maybe BPPV caused by hitting my head. It's been a very distressing episode, made 10 times worse by having ALS. It has definitely taken a toll on my mobility. Between the loss of Jessie and this episode, my typically positive outlook has taken a nosedive…

It continues to be unseasonably hot here (mid-90s, which we don't normally see until August for a few days), with no relief in sight. At least it cools down overnight so I can get the house cooled down by morning before closing up to keep the hot temps at bay. Several local rivers have already been closed to fishing, as the water is much lower and warmer than expected, putting great pressure and stress on the fish.
 
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