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

lisa g

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FORT PIERCE
Another Wednesday has come around. I have so much going on my head is spinning.

Last month Dr Benatar ordered genetic testing. I just received a call that the results are back. I'm scheduled for a Telehealth with him on Tuesday to go over the results.

I just received my voice recorder from the Gleason foundation to start voice banking. I have a Telehealth set up with my speech therapist at UA Miami to start that up. I was also advised by the therapist to get a voice amplifier to save energy from trying to project my speech. Just received my microphone so I'll start playing with that.

Then Friday next week I go for my first pulmonary function test to get a baseline. In between all this I'm finishing my 4th cycle of Radicava and make sure that I go in the pool everyday to do laps, stretching and ROM. Hopefully things will settle down.

Hope all are enjoying today. Sending my thoughts and prayers to anyone that is being affected by hurricane Sally.
 

KimT

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Lisa, That's a lot. I'm going to the podiatrist next week to find out what's wrong with my left foot. I can still walk on my heels and toes but I have horrible pain in my left heel. It feels like nerve pain.
 

TippiLeigh

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Things have been a bit rough lately. I’m near one of the large fires in California. The most recent evacuation zone is only about 9 miles from my house. I’m actually not too worried about the fire reaching us but the air is horrendous. So not only are we heavily social distancing now I can’t even go outside!

We’re a few weeks into distance learning. Pretty easy for my high schooler. Not quite so easy for my 1st grader.

Still a bit of depression from my second opinion. It’s hard to hear them agree with your first neurologist. But with that said, I was called yesterday to get my physical and occupational therapy started. (Although won’t be until next month because they’re booked out that far). So, I’m glad to at least be doing something!
 

swalker

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CO
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Vail
Life continues to be busy here.

The work on our motorhome has been completed and we have been putting off a final decision about whether or not we should take our fall trips to Yellowstone, the Tetons, and the Grand Canyon. Unfortunately, with Covid still hanging around, we have decided that it is best to cancel the rest of our trips for the year. We told the shop to go ahead and winterize the motorhome and we will put it in storage for the winter.

We now have both spring and fall reservations for trips to Yellowstone, the Tetons, and the Grand Canyon for next year. We are hopeful there will be an effective vaccine available by spring so we can go on those trips!

Today we had a wheelchair tech out to provide a second opinion on the motors damaged on my Permobil C500 wheelchair that was damaged when we flew to Ohio and Texas at the beginning of the year. It took him about 2 minutes to determine the motors were damaged. I knew they were damaged and was glad that he was able to quickly evaluate them and conclude they needed to be replaced. We are now waiting to hear when the replacement will happen.

I have been working with both NuMotion and Permobil about the growing list of issues with the new Permobil F5 that we got about 2 weeks ago. It has some very serious issues and is pretty much unusable until it is repaired. I am beyond disappointed! NuMotion is short of repair folks, so it looks like it will be awhile before they can even look at it. I have inquired about replacing the wheelchair and they are investigating.

In the process of trying to figure out what is wrong with that F5 wheelchair, I talked to a remote service tech at Permobil. Somehow the conversation drifted toward the issues I have had over the last 5 years with my C500s VS wheelchair (it has gone through 7 sets of motors). He thinks he knows what the core problem is, so there is the potential we will get that wheelchair to stop going through motors so quickly.

Our wheelchair van has developed an oil leak. I had a shop check it out and they think it is time for a new oil pan gasket. We cleaned it all up and took it for a test drive and confirmed that is (at least one of) the leak(s). We will continue to monitor it and if it gets worse will need to have the oil pan gasket replaced.

I have been able to get out for a few shorter rides over the last week. Most of those rides were testing the new F5 wheelchair. I was able to go 9 miles today (not in the F5) and really enjoyed it.

The last week has been relatively smoke free. We have had some cooler temperatures and a bit of precipitation that has quieted down our local fires. Today the wind patterns shifted a bit and we received some smoke from the fires in California. It is enough to be a bit bothersome, but not as bad as it was a couple of weeks ago.

Steve
 

Krismn

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This is my first time posting in the PALS thread. I’ve had a lot going on since being diagnosed in June.

My husband has been working around the clock renovating our downstairs bathroom to include a roll in shower and converting our dining room into a bedroom since I can no longer get up the stairs. It’s so close to being finished.

I’ve been very overwhelmed by the progression my hands and legs and loss of independence. I’m still able to walk short distances with the walker, but am getting fitted for a power chair. A nice family donated a power chair to use in the meantime which has been great.

On a positive note, I took a trip to Hilton Head and Charleston, South Carolina with a couple of my friends and my daughter. We rented a transport chair to get around and also a beach wheelchair to get down by the water. The trip was a blast!

We have a lot of smoke where I am in Washington and am looking forward to it clearing up so I can go on some outings in the power chair!
 

KevinM

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PALS
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Hi all. Here I was last week commenting that I hoped more folks would check in each Wednesday, then yesterday I go and totally forget! Better one day late than never, though.

Lisa, we certainly had a drenching here the past couple of days from Sally, but nothing like Pensacola.

Kim, so sorry about the new nerve pain. Just when it sounds like one pain is improving, another attacks. That really sucks. I’m still astounded that more than five years in you can still heel/toe walk, though, especially for a LMN dominant PALS like me. I can as well (for now), but I’m a newbie compared to you. Whatever the heck you’re doing, keep doing it!

Steve, I simply can’t believe all that you go through with your PWC‘s. At least you have plenty to keep you busy/distracted, which is something with which I struggle. With my wife working, I have way too much alone time (well, except for our crazy sheltie and ancient tabby).

I’m thankfully still completely independent, but not working this past year and being at home all day alone is really taking its toll. And of course COVID limits so many activities that we would otherwise find to do outside the house when she is home. Lots of reading, IPad games, and small home projects. Often, though, I end up stewing in my own anxiety juices, which isn’t healthy.

Ok, snap out of it, Kevin. Here’s to celebrating another day of being here, communicating with all my forum friends, and telling my family how much I love them. Maybe today is the day I’ll finally win three games in a row of solitaire! K
 

nona

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Here. Getting very frustrated dealing with neck collapse and pain and feeling like no one cares to help me find a solution. I have a PT who has no wheelchair experience and says she can't do anything more for me since I'm not improving. And a wheelchair technician who has no anatomy experience. And the head array technician with no ideas. Very frustrating.

Has anyone heard from @Doglady ? I feel like I haven't seen her post in a while.
 

KevinM

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Jessie, so freaking sorry about no one helping with your neck.

I had the exact same concern about @Doglady.
 

EricInLA

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Hi all. I've been pretty stable - shoulder pain subsided, but on the other side of the ledger I'm noticing more leg pain in the evening after moving around all day. The thing that's been annoying me most is more mental than physical -- noticing the skin on my right arm shrivel as the muscles inside slowly recede. Sometimes I just stare at it and it gets me into a 'mood'. I'm trying to get better at just looking away and moving on with my day.

The air here in LA is bad from the fires. Not as bad as in Northern Cal, but still really bad. Because of Covid, we can't eat inside a restaurant. Now with this air, we can't eat outside either! I suppose it's par for the course in this 'annis horribilis', to quote Her Majesty.

I'm sorry Steve can't take those trips - they sound heavenly. We've been trying to get to Yosemite but various calamities continue to conspire against us. I think Kevin is correct that all of your tasks are good to keep the mind busy. When I was first diagnosed, I toyed with the idea of retirement, but I'm glad I didn't. I find that when I'm focused with work, dealing with clients, even problematic ones, I totally forget about my medical condition. Kevin, maybe you can find some volunteering or something where you are required to do something or be somewhere? Just an idea. My wife, whose job was canned due to Covid, is also stumbling around trying to figure out what to do. She helps the kids with schoolwork, but she already did that for 15 years and was enjoying resuming her professional career last year.

Jessie, that sounds miserable. You're so tantalizingly close to Boston, which seems like the center of the ALS therapeutic universe. I wonder if there is someone in the area who could help. Have you contacted CCALS? I think they serve all of New England, and seem to remember they make housecalls. I hate to see your issue go unresolved, especially with all that ALS expertise close by!

Sending good vibes to all.
 

lisa g

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Nona so sorry for your issues. Makes me wish we could just snap our fingers to send the help to those that need it.

Kevin so glad you escaped Sally's wrath. My heart goes out to all those affected. I retired 4 years ago at 58 and was looking forward to my retirement then this s**t storm hit. I'm sad that I can't help my younger daughter with her 2 little ones (2 1/2 & 1 month) I just can't trust myself lifting them. I do volunteer once a week for a cat sanctuary that helps take my mind off of thing.

Eric, I can't imagine the smoke and am sorry you have to deal with it. Glad your home isn't affected. Hopefully they'll get the fires under control soon.

Doglady check in so we all know your ok.

Off to get my infusion.
 

KevinM

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Good luck with today’s infusion Lisa. Keep us posted on whether you notice positive results.

Eric, thanks for the suggestion re: volunteering. I was so tempted to help a retired friend register voters on the Florida State campus, but, well, they’ve had more than 1,000 cases in the past two weeks, so there goes that. Still looking out for other, less dangerous activities.

And man, we are very similar in our progression, and the fact that staring at my muscles in the mirror can ruin my day as well. My muscle loss is in my upper back and shoulders, so the only good thing is that I can’t see them as well as you can with your arm. I’m obsessed with wearing shirts from my closet that minimize the increasingly protruding bones. That and dressing before I get in front of a mirror! Thank goodness for THC oil and an occasional Ativan or Vicodin during the day, and Trazodone at night...

The bottom line is that we should both be thankful we can still dress without assistance, which so many of our friends here that are further down the road can no longer do. Our time will come, but for now we should try to stay positive and embrace our transitory independence. K
 

KimT

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Jessie,
That is so unacceptable. Please post your problem on the general forum and maybe some CALS will have a solution. Surely, this must have happened before.

Kevin & Eric, I hear you. I've always been hyper aware of my body and liked my thin, muscular frame. Now, I still can't break from "testing myself" in every way possible. Sometimes, I think I bring some of the pain on myself. I bought breathing equipment and when I do the MVV, my back always hurts more because I put forth such an effort. I'm almost ashamed to admit some of the things I do. One is taking online typing speed tests to see how my left hand is doing :LOL: I also look at pictures I've taken in the past and it almost makes me sick with sadness, anger or something. To top off my madness, I bought a FitBit activity tracker last month to see if my heart rate gets in the zone while in the pool. It does. It also maps my sleeping so it makes me want to get to bed early and up early. Unfortunately, it also counts the number of steps I take each day. Mind you, I sold my Apple Watch two years ago because I just hated to see how inactive I was since my diagnosis. Now, this watch tells me to "get moving" every hour and I can't seem to ignore it unless it's being recharged.

I also spend hours each day playing iPad and computer games. I even thought about playing fantasy football but I'm so out of touch with the players since my diagnosis, I'd be low lying fruit. I started watching House re-runs. It was a favorite. He sure mentions ALS multiple times in quite a few episodes, even when I knew that couldn't be the diagnosis. He should have posted on DIHALS :ROFLMAO: Scary part is I know most of the differentials from studying medical crap for the last five years and doing that doctorate in naturopathic health.....The only good take away is that House popping all those Vicodins made me think what the heck. If I need 1/4 Oxy to feel better, why not?

Steve, You are such an inspiration. You know more about wheelchairs than the people who make them. I appreciate your willingness to help people with their wheelchair issues and questions. Praying that you'll be able to make your two trips next year and post some wonderful pictures.

Eric, I wish the part of the Country getting hammered with rain could shift to the part that is burning up. It sounds like a science fiction movie when you think about it.

Lisa, I hope your infusions are helping. Let us know.

Now for my funny story of the day. Many of you know I have a housemate, Fred. We're not "together" nor is he my CALS. We just split the cost of a nice condo neither of us could afford without the other. Last night Fred was trying to make me laugh. He was acting like Kramer on Seinfeld and came in sliding on his socks. Well, he fell and dislocated his kneecap. It was the size of a grapefruit only in the wrong place. Good thing he had some serious THC on board because he just laughed it off. Now, he thinks it's relocated but believes he did some damage. He said he'd be using my PWC before I did.

Praying for sunny skies where it's needed and rain where it's needed.
 

blitzc

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PALS
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01/2018
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OH
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Massillon
Hey gang! I sure needed to see all these posts today! I have been feeling so sad about the state of our country...with fires raging across so much of the west, poor air quality with the smoke that is actually making it to our skies here in Ohio, the racial injustice and division it is continuing to promote, the COVID crisis and the debate over masks and state orders, dreadful hurricane damage, and this damned ALS progressing slightly every day. So it goes...

But there is always light to behold, right? So let's move on to HIGHLIGHTS and SUCCESS:
  • We are now the proud owners of a handicapped van! It is a 2016 Honda Odysey with only 26,000. It was modified by Braun Mobility as a new vehical with side entry automated ramp. I can sit up front or in the middle. I now can get out of the house in my PWC with so much ease and lack of effort and energy!!! And it is so much easier on my husband to transfer me.
  • My husband and I along with our good friends took the van on a weekend getaway to Columbus to the Zoo. We ate dinner out and spent some time shopping. Everywhere we went people were very compliant with masks and social distancing-PWC help in keeping people back away from you (kind of like a snow plow)!
  • No falls! :D
One problem we had to deal with is my aide has been unable to care for me the last three weeks due to an outbreak of COVID at the nursing home she works at during weekends. We insisted on her returning once she had a negative test result. She is finally returning tomorrow. With more than 50 patients and 19 staff member infected, the nursing home was not providing timely testing with quick results. We fortunately found ways to get by with the help of friends coming to help me.

Hands tired from so much typing...Bye for now.
 

Fusia

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Big sky country
I'm with @blitzc - focusing a lot these days on all of the problems and losses we are all facing, but trying very hard to keep a positive outlook.
- I did get my Permobil F3 in July, but I haven't used it all that much. I'm a little concerned about becoming dependent on it too early, so only using it for longer journeys.
- I also just got a new–to–me wheelchair vehicle, a 2015 Toyota Sienna with the Braunability conversion. So, now I can get out more with friends on some "hikes" on the local trails and tagging along on the golf courses.
- My bathroom remodel has just finished, I love it. It has a great roll in shower and a heated floor throughout.
- i've been going out to see my dogs two or three times a week. I recently rehomed them with my old neighbors who remain very good friends. The dogs are in a wonderful home and all people and dogs are adjusting well.
- i've had a lot of visitors over this past month, great friends and a few family members. I live less than two hours from Yellowstone national park, so I have made a few day trips down there recently with some of my visitors.
- the air quality here is terrible for the past week, the smoke from the West Coast has finally moved in and looks like it's settled here for a while. Unfortunately, we did have a fire just outside of my town that destroyed 28 homes and many outbuildings. It's very sad.
- my progression seems to have accelerated a bit over the last few months. My arms are much weaker, hands are more useless, my back and core muscles are weakening, and my legs are starting to weaken. In fact, I just had a lift chair delivered today, which I really hate - it was the only one I could find locally that fit me well and was comfortable, but wasn't too hideous.😳 I know I will need to start using it, though.

In addition to @Doglady, i've been wondering about @Jimi - I haven't seen him post lately and I miss his technical insights and his generally positive outlook.

Have a good week, everyone.
 

Jimi

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Torrance
Hi Fusia,
Thanks for thinking about me. I have been around a bit but haven't felt that there was much for me to contribute lately . Plus I have my 7th grader doing online school. Has been a so much fun having the time with her. She's at the age where things are changing rapidly and I am loving it! I'm not sure where she got it, but this kid is so hilarious and happy go lucky that I am truly thankful for her. She is a straight A student and full of unharnessed raw talent. I have raised her to have more confidence in herself than I had. Problem is that she is now a bit too aware of how smart she is! I have created a monster! Ha ha. All my best everyone.
 
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