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

[blitzc]

@KevinM "Mom...Kevin said the F word!"

I need something for my nightime pain in bed...hips hurt so much I can't sleep. It doesn't help that I don't move in bed without help. So now my husband, Marc, isn't sleeping much either. I take 1 Tylenol PM just to help me get to sleep but I have no other prescriptions.

Now for the electric currents running through your body...my body moves so much all the time, I would feel odd if it stopped.

Such a wonderful day today!!!! I feel a great sense of relief, peace, and decency!

How about that young women Poet laurette? Can't wait to read the text of that poem.

 

[KimT]

OK.....who was the douchebag that said there was no pain with ALS? Really? I've had pain since January 2016. I can't tolerate hydrocodone so I asked my pain management doctor to prescribe Oxy. He is also a neurologist. He gave me an Rx and I started stockpiling it in case the government outlaws it. He prescribed 15 mg twice a day but told me to start slow. I never got past 1/4 tablet four times a day. Mostly, I use it to break a bad pain cycle and it feels good psychologically. I like the high. It's unlike week. I don't like the high from weed.

If hydro upsets your stomach, ask for Oxy. Terminally ill patients should have access to any drug that helps. Even chronically ill people are resorting to buying street drugs because their doctors cut them off. That's a crying shame.

I cried my eyes out watching President Biden and VP Harris today. I'm so glad I lived to see the day that a woman would make it to VP. Imagine all the little girls who were inspired by her, especially girls of color and immigrants. God bless America. Today I was proud to be an American. Oh how I miss my father. He would have loved today.

I'm hoping to get my vaccine soon. My brother got his first shot today at the VA. I hope he's doing well. He's 84 and has Alzheimer's. He did follow the election and aftermath closely and he still reads two newspapers every morning.

Now, I can finally face my European and Canadian friends again LOL

I love each of you and always look forward to Wednesday so I can see how everyone is doing. Any little detail. How you feel.

 

[Krismn]

I’m sorry for the pain so many are experiencing. I haven’t been in any pain, but taking THC gummies at bedtime have been helping me sleep through the night.

I’m spending most of my time in the power chair lately and it’s getting exhausting
transferring in and out to use the bathroom. I’m really dreading the moment when I am no longer able to do this on my own.

I really enjoy reading all of the updates. Hang in there everyone!

 

[EricInLA]

Hi friends - Checking in late today because I've been consumed with all the inaugural coverage. It was really so inspiring in so many ways. My pride in country is restored, and the inaugural special this evening was just awesome. I loved the Foo Fighters and a bunch of the others. The song that Demi Lovato did, with all the people, and then Katy Perry with the fireworks, was as good a half-hour of television as I've seen in a while.

I don't like hearing about y'all wrestling with pain. I know that takes its toll mentally as well as physically. I've had only short bouts of shoulder pain from overusing weak arms, but after a few days it has subsided and mostly I've been pain-free. I do have the nonstop twitches though - in fact I've been twitching consistently for almost 3 years now. I often think if I could hook myself into the grid to harness all this energy it would be enough to light my entire house and charge the car too! I hardly notice it any more.

Happy to report that I was able to get to the mountains this weekend and got in a full day of snowboarding with my 3 sons. It was so exhilarating to fly down the mountain. I hadn't done this since I was diagnosed one year ago, and though my legs are still fine, I had no idea if I could still do this. But I can, for now. My calves are sore as hell at the moment, but that usually happens when I ride, so I'm not freaking out about that. Just happy I was able to do it.

 

[KevinM]

Kris, I sure hope you will be able to transfer unassisted for a good long time. I know how exhausting this disease is.

Eric, so cool that you and your sons got to enjoy the mountain! Being a Floridian I know nothing about snowboarding, but it sounds wonderful.

You mentioned that you have had fasciculations for three years but you weren’t formally diagnosed until last year. My sudden onset of body wide twitching (obvious weakness) was so obvious and unsettling—especially since I had no history of twitching and was 61, not 21, when they started—that I started my path to diagnosis literally a week after they began.

I realize this was an unusual initial presentation, but it sounds like you delayed seeking an answer to the twitching for some time, and I’m curious why that was. Best, Kevin

 

[lisa g]

I concur Kim, whatever moron said that theres no pain with this crappy disease obviously never experienced it.

Kris, hoping your transfers maintain

Eric, happy you were able to enjoy some snowboarding. I have never tried it and know my legs wouldn't support it.

Cathy, I'm sure the f word is in many of our vocabularies in dealing with this disease. I can tell my speech therapist blushed when she listened to some of my phrases recorded in my voice banking

 

[KevinM]

Good for you, Lisa! A well placed profane phrase is totally appropriate...

By the way, I meant to say “no obvious weakness” in my reply post to Eric. It was all about my twitchy body early on... K

 

[nona]

I've had very little twitching all along, just here and there on my right arm or leg. Definitely not all over and definitely not electrical.

@blitzc , Cathy, where is your hip pain? I sleep on my left side and I have radiating pain from my right hip down to my knee and shin. It has helped to put two pillows between my legs, from my knees to ffeet. I take one Aleve and one extra strength Tylenol before bed and that usually lasts until 4-6 AM. If I'm having a bad run I'll add half a Tramadol. I'm pretty sure it's not a full narcotic so it makes me tired but not loopy. I've also had cortisone injections in both hips, but the left responded better than the right. I hope you can figure it out so you can sleep.

 

[Fusia]

I'm a day late again, sorry. Wednesdays are always a busy day for me - a caregiver comes in the morning, then a friend comes to help with projects (yesterday, we took a bunch of stuff from my garage to the Habitat for Humanity donation site and to the animal shelter), then another friend comes in the evening to make dinner and help me with exercises. I then caught up with the inaugural activities before I went to bed.

Speaking of removing stuff from my garage… it seems like I keep culling stuff out of my house, but other stuff seems to move in and take its place. When I do step back, though, I really am making progress in simplifying my life. It feels good to pare my belongings down to only the things I truly love. I made a little more progress on getting my home set up with voice control - I now have voice control window blinds! Love them! They are from a company called My Smart Blinds, not too expensive and very easy to install - they even have a little solar panel that keeps the battery charged.

I, too, am sorry to hear that so many of you are in pain. I don't have a lot of pain, just exhaustion. I'm still resisting using the PWC, because I can still walk. However, because my back and arm muscles are pretty well shot, walking is exhausting because I'm all stooped over and using my core to try to stand up straight.

Last Friday I went to our local Hot Springs to soak. It was great, but I think I stayed in too long - I was in over an hour and for the rest of the day I was so fatigued I laid in bed all afternoon. I've since found out that too much heat for too long is probably not great for ALS (and MS) patients. I'm going to continue going but just stay in for a much shorter amount of time.

A few days ago I had a call with my ALSA chapter's assistive technology person about an alternative mouse control. One of the things she showed me was the Quha gyroscopic mouse. I like it because I could easily switch between using it with desktop, iPad, or iPhone without having to move any devices (like a camera). I'm going to look into it a little bit further. It's pricey, so I'll see if I can find a used one or a loaner, or just bite the bullet and buy it. I use voice control on my Apple products, which I really like. However, using the drill down feature with overlays gets tedious, so would be nice to have a way to move the cursor instead.

Let's hope some of the good vibes from yesterday continue! Have a good week.

 

[EricInLA]

Fusia, you had quite a productive day yesterday! I understand exactly what you mean with respect to paring down physical possessions. I'm a "Marie Kondo" kind of guy, and I get real satisfaction from cleaning things out and paring down to just the important stuff. (Wife is not exactly that way but she will admit she is happy once I make the hard choices of what to throw out) That hot springs soak sounds fantastic. Even the post-soak exhaustion sounds nice.

In answer to Kevin, my nonstop fasciculations started in May, 2018, which began a long journey to diagnosis. At the beginning, I thought I might have Parkinsons, so I ran to the doctor, who told me it's not Parkinsons, but referred to me to a neurologist to "rule out" other shitty diseases. The neuro ordered all of the usual tests. MRIs were mostly clean. EMG was not clean, but not a slam dunk for MND either. He said that MND was possible, and that I should I repeat the EMG in 3 to 6 months "as needed". Well, I didn't notice any deterioration or weakness or any of the things that Google warns you about (heal/toe walking, trouble with buttons or keys, etc) for the next 17 months, so I never repeated the EMG during that time. Looking back, I'm grateful I had those carefree 17 months. We celebrated my son's bar-mitzvah, took great family trips, and I generally enjoyed my life. It was only in October, 2019, when I noticed changes in my right hand -- thumb couldn't press down on the hand soap pump, a deep hollowing out of the area between thumb and forefinger -- that I knew I wasn't out of the woods. So I restarted the diagnostic process which led me to Forbes Norris ALS Center in San Francisco where they diagnosed me last January. Then confirmed with 2nd opinion at UCLA. The neuro at UCLA said I was a slow progressor, and that I should just "live my life", so I took her orders. The next month, the pandemic arrived. What a long and strange 2020 it's been!

 

[blitzc]

I'm trying out a new extension on my Chromebook in order to type from my voice . it worked great!

 

[KevinM]

So glad to hear about the Chromebook extension, Cathy. We will now expect lengthy and entertaining posts every day!

Eric, thanks for describing your diagnostic journey. Since you are a good bit younger than me I’m sure that benign fasciculation syndrome was considered a legitimate possibility, and since you had no obvious progression for many months I would have probably gone about my life just as you did. Or at least tried, because I have a very difficult time ignoring them even now, two years since they started. Kevin

 

[KimT]

They bother me most at night. During the day, especially if I'm wearing sneakers, they don't annoy me. It's when I'm at rest that they bug me. I found, by accident, icing my foot helped. I hate cold but it calmed the nerves in my foot down or maybe froze it so I couldn't detect it.

 

[KevinM]

Another Wednesday everyone. As always, would love to hear from as many as possible.

I will admit I’m not in the best of moods, but not because of ALS for a change. Just got overcharged by a plumber, which got me upset, so when I went to trim my stubbly gray van dyke or whatever the hell you call what was growing on my chin, I forgot to put the little clip on tool that keeps the electric razor at the right length.

Shaved off half of it clean to the skin before I even realized it. So now I’m back to being clean shaven. Oh well, it’s just facial hair, but damn it all, it took me forever to grow what little there was.

Hoping the rest of the day is better. Best, Kevin

 

[lisa g]

Checking in, Kevin sorry but reading your shaving episode almost made me pee my pants just visualizing it. And I so needed the laugh this morning I've already had a rough start to my day. My cat that I absolutely adore has a habit of running through your legs. My husband kept saying it would be a matter of time that she knocked one of us over. Today was the day! Her and I have a daily ritual. In the morning I take my coffee and tablet out to sit on the front porch. Today as I was stepping out to the porch she came flying around the hallway and ran in between my legs as I stepped down. You guessed it my coffee went flying, my tablet went flying and I went flying. Miraculously my coffee cup didn't break and my tablet survived. I however am sporting a nice black and blue on my butt and hip. I guess it could have been worse.