I'll share something with everyone. Not sure it qualifies as inspirational, but anyway ... So I have a good friend, who due to my als and my self isolating tendencies, I haven't seen regularly for a while. Totally good guy. My daughter and his have been friends since babies. This past weekend he leaves at like 4am to go to work. Less than a mile from home he gets on the freeway and a wrong way driver collides head on. Both drivers die on site. I can't believe I am still here and he is not. My daughter does not seem to be affected much over it or her friends loss. I never had something like that happen to anyone I knew at her age. Maybe I would act similarly. I guess there's not much a kid can really say. Not sure what to say about it myself. I also wonder what effect my condition and the fact that my daughter is aware of the typical outcome of als has had. She has learned compassion. Perhaps my steady progress and decline is preparing her for the loss? I don't know ...
I feel fortunate to still be here ...
I've also lost people I thought would be here long after I was gone. It's a strange feeling. When I heard RBG died last night, it felt like things were backward and I was in some kind of alternate reality. Even though I knew her prognosis, it hit me hard.
Then when a teacher died of CV, again I was hit hard. But my friends dying had a huge impact on me.
Already another Wednesday. Trying to keep this thread alive, so I’d love to hear from as many as possible!
The highlight of my day is having two plumbers under the house banging away as they fix a leak and replace our water heater. Water is off, so must rely on beer for the afternoon...making chicken salad from chicken s—t, as they say. Best, Kevin
Ha, that makes me laugh. As Homer Simpson would say. . . "beeeeeeeeer". Plumbing leaks are the worst - hope they fix it quickly, Kevin. Chicken salad sounds pretty good. Nothing much to report. The air is better in Los Angeles - woo hoo! A little stumble by my Lakers last night, but I think they'll be OK. I'm hoping for a traditional Lakers-Celtics final. I'll have to make some kind of wager with Jessie on that.
Well here we are another week has passed. Right now my husband and I are taking a drive down A1A watching the ocean roll in. Needed to get out and get some fresh air. We stopped to walk along the beach.
I had a telehealth with my neurologist from UA Miami yesterday. He had done some genetic testing and went over the results
My results came back negative on C9ORF72 and sod1. Was happy to hear that since I have 2 daughters and they each have 3 children. I breathed alittle easier knowing the likelihood of passing this monster on to them was extremely low if at all. Love Dr Benatar he has a way of making you laugh and reassures you. Going on Monday for a pft test curious where I'm at.
Kevin cold beer sounds great, but I'm finding that since I've been diagnosed I can no longer tolerate alcohol not that I don't try. How could that happen??? Life can be cruel.
The highlight of my day was a visit to a podiatrist. He is an MD and surgeon also. He lost his Mom to ALS. He said the Xrays showed all bones in my foot were perfect and no arthritis. He did the touch test for plantar fasciitis and it HURT. He confirmed it by sonogram and said it was a pretty bad case. He said to never go barefoot but I can still walk and swim. He gave me exercises which I was already doing, thinking that might be the case. He approved of my running sneakers and my sketchers (with heel pads) for around the house.
It's good to know I have him for future reference. They are a big practice. He will see me again in two weeks. His parting gift to me was a shot of steroids in my foot. I can't take oral steroids, which he wanted me to take, so the shot was the alternative. He kept warning me how much it would hurt but it didn't.
I wasn't very happy about my blood work this month. Both my creatinine and albumin dropped but are still in the normal range. I'm going to add more protein into my diet and consider re-introducing dairy(organic Greek Yogurt.) The rest of my blood work should be back later this week. I have a return visit to Mayo in October. They will review my lumbar MRI and the nerve root issue. I no longer go to clinics but, since I've been their lab rat for new doctors, the neuro sees me as needed.
Regarding beer. I liked it until I was about 30, then I stopped all alcohol. Now I take way too many drugs to add alcohol into the mix.
Feeling emotionally better this week, after getting my second confirmed diagnosis. I still have about a month before my EMG to *hopefully* stay PLS, so I’m trying to just maintain some normalcy and sanity until then. I watched the Social Dilemma on Netflix which quickly had me getting off of social media and I’m much happier for it LOL. (Although I do check the ALS/PLS pages from time to time.)
I’m still trying to find a good balance when it comes to my physical issues. I find that on “good” days I tend to overdo it and then I pay for it the next couple of days with feeling tighter and weaker. My mind and body want to do two different things. It’s frustrating! Also, sitting is not my friend. Because of weight loss and atrophy on my bottom, I’m starting to hurt quite a bit. I got a Roho pillow, which helps, but I think I’ve done a little damage in the process so I’ve been doing a lot of side sitting.
We’re in a pretty good routine now with distance learning. My high schooler can do it, no problem. My 6-year-old requires help logging in and out, which is required several times a day, so that keeps me busy! I also have to constantly check on her because she likes to act silly on camera, which could lead to trouble with the teacher LOL...
I’m in Central California near the Creek Fire, which I think they said is now the largest ever in California’s history. The air has cleaned up a lot, but still not great.
And now I really want a beer....I was going to say you all are bad influences, but in our case, it’s a good influence! HAHA!
I took my first "hike" in my PWC today. A friend and I drove out to a trail outside of town - it's a paved trail about a mile up to a beautiful waterfall. Made it up no problem, however I did get a little stuck as I tried to get up the last little grade to the bridge looking up at the falls. I ended up getting out of the chair because I envisioned myself rolling backwards down the steep hill. My friend and another person up there managed to get it unstuck for me. I guess I should've read the book first about the steepest angle I should attempt… coming down was a breeze. It was so great to get out, It was a beautiful day. I'm going to try to attach a picture near the waterfalls before I got back in the PWC for the trip down.
I had a couple of friends from Chicago stay with me last Friday and Saturday nights - it was great to catch up with them and we shared some great meals, cocktails, and wine. My brother and sister in law arrive in about a week to spend several days here. I plan to put them to work on a few little projects around the house!
I ended up returning the lift chair that I had purchased last week from a local store. I decided to focus on making the PWC as comfortable as possible, and skip the lift chair for now. For me, that was the best decision.
We went for a long drive today to look at the aspens in their fall colors. It was a beautiful day, though there was a bit of smoke in the air.
We drove a 4 wheel drive road over Hagerman Pass. We used to do that pass several times a year. For each of the last 3 years I have put it on the "must do" list. But, things interfered and we were not able to go. So, today we did it and it was absolutely wonderful.
We drove from Vail to Eagle and then up over crooked creek pass. We then went downhill to Thomasville, were we joined up with the road over Hagerman Pass. That pass is 11, 925 feet and the road has degraded substantially since we last did it 4 years ago. We were in a capable 4 wheel drive vehicle, so did not have any problems, but we did have to carefully pick our line in a few places.
I am pretty beat from bouncing around over the bumpy road, but it was well worth it!
OK, so I thought of the beer drinking group the other night. I was watching the Indians play the White Sox, and my husband decided to make quesadillas for dinner. So my son ran out to get a six-pack of Corona (bottles). Well, whar's a girl to do but ask for a Corona with lime and holler at the baseball game on TV while my husband makes dinner in the kitchen!!!!
I finally had a visit from my respiratory therapist today. Too many COVID protocols the last couple months to get normal visits. I'm dealing with redness that won't go away from the chin strap I use with the nose pillows for my Trilogy. I may have to switch to a full mask to cover my nose and mouth so I won't need the chin strap. I'm trying vaseline each morning to help.
Now that we have the van, we plan to take a drive tomorrow on my husband's day off. We may end up at a corn maze and sunflower field or perhaps a bird sanctuary. I am just thrilled to get out of the house.
Steve and Fusia, your pictures are amazing! Thank you!