PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]
I'll be cherishing my pool time here. See you in a couple of weeks.
TippiLeigh
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Havenāt been doing great. Iām consumed with worry regarding my appointment this Friday. Iāll be having my EMG at UCSF. My last appointment with them, I kept talking about my PLS diagnosis that my first neurologist gave me and she kept steering the conversation back to ALS, so Iām trying to prepare myself. (Because, Iām pretty sure she was trying to prepare me.)
Also, Iām REALLY angry right now. My sister called me and was trying to be nice and supportive about my upcoming appointment. She said, āIāve been praying and I just have a feeling that theyāre going to tell you that youāre going to be just fine. I just know it!ā I should just take it at face value and appreciate that sheās just trying to be supportive, but it just made me mad. I donāt want to put my head in the sand. I donāt want to pretend that Iām not losing my ability to walk a little bit more each day. That I can no longer open jars or lift a glass of water over my head. I want people to be real with me. Just say, āThis F-ING SUCKS!!ā
I think I need to go meditate again...LOL
Also, Iām REALLY angry right now. My sister called me and was trying to be nice and supportive about my upcoming appointment. She said, āIāve been praying and I just have a feeling that theyāre going to tell you that youāre going to be just fine. I just know it!ā I should just take it at face value and appreciate that sheās just trying to be supportive, but it just made me mad. I donāt want to put my head in the sand. I donāt want to pretend that Iām not losing my ability to walk a little bit more each day. That I can no longer open jars or lift a glass of water over my head. I want people to be real with me. Just say, āThis F-ING SUCKS!!ā
I think I need to go meditate again...LOL
lisa g
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TippiLeigh, we won't sugar coat it here since we all know how your feeling but we do pray for the best.
I know how you feel when your told that they hope you get better. I had someone tell me "your strong you'll beat it " I couldn't even answer that response I was afraid of what would come out of my mouth.
You'll have your EMG on Friday while I'm having my FEES (Fiberoptic Endoscopic evaluation for swallowing).
. I'll be sending good vibes on Friday 
I know how you feel when your told that they hope you get better. I had someone tell me "your strong you'll beat it " I couldn't even answer that response I was afraid of what would come out of my mouth.
You'll have your EMG on Friday while I'm having my FEES (Fiberoptic Endoscopic evaluation for swallowing).
. I'll be sending good vibes on Friday
TippiLeigh
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KevinM
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- Mar 30, 2019
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- 06/2019
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Hi all. Roll call man got beat to the punch! Good for TippiLeigh and Lisa.
Some days and weeks are just better than others. This one has not been a bowl of cherries. On Monday, my wife received news from her middle school that she was possibly exposed the previous week to COVID from a student in, of all places, chorus (lots of singing, albeit with masks). Luckily, the student was a couple of rows away.
She has had a slightly raspy throat (No other symptoms) , but I calmed her by saying she gets it every year with the Golden Rod in bloom. Sheās still scared, though, and we are quarantining from each other as best we can. Got the LabCorp in-home test today, and will Fedex it back later today. Two days to get results, which we are pretty confident will be negative. Still, an example of the very tenuous nature of the school situation right now. And Florida is about to explode...
To pile on the sāt, I spent $1100 two weeks ago to repair the a/c on my Buick Enclave, but the same problem started again yesterday. This time, the estimate could be as high as another $2,000. Yippee!
The ONLY positive news (for me) was that I had to postpone the molar extraction because of quarantine. I am not jumping with joy to get it pulled since it really isnāt bothering me, plus I get a respite from pain and three days of yogurt and smoothies for a couple of weeks.
On the ALS front, Iām still doing okay. Arms, legs, breathing, speaking, and swallowing still work, but the continued slow but steady loss of muscles in my back, shoulders, and triceps causes a lot of muscle aches and pains when I use them too much. Right now, the mental stress knowing none of this gets better is getting to me, And I donāt think I handle it as well as some.
Cool fall days coming this weekend, though, and we are hosting our daughters 27th birthday dinner with her boyfriend and an elderly friend of the family. Masks, distance, and crab cakes ordered from Maryland. A winning combo! Kevin
Beauty is still everywhere, though. Hereās a pic of the swamp sunflowers in full bloom around our pool.
Some days and weeks are just better than others. This one has not been a bowl of cherries. On Monday, my wife received news from her middle school that she was possibly exposed the previous week to COVID from a student in, of all places, chorus (lots of singing, albeit with masks). Luckily, the student was a couple of rows away.
She has had a slightly raspy throat (No other symptoms) , but I calmed her by saying she gets it every year with the Golden Rod in bloom. Sheās still scared, though, and we are quarantining from each other as best we can. Got the LabCorp in-home test today, and will Fedex it back later today. Two days to get results, which we are pretty confident will be negative. Still, an example of the very tenuous nature of the school situation right now. And Florida is about to explode...
To pile on the sāt, I spent $1100 two weeks ago to repair the a/c on my Buick Enclave, but the same problem started again yesterday. This time, the estimate could be as high as another $2,000. Yippee!
The ONLY positive news (for me) was that I had to postpone the molar extraction because of quarantine. I am not jumping with joy to get it pulled since it really isnāt bothering me, plus I get a respite from pain and three days of yogurt and smoothies for a couple of weeks.
On the ALS front, Iām still doing okay. Arms, legs, breathing, speaking, and swallowing still work, but the continued slow but steady loss of muscles in my back, shoulders, and triceps causes a lot of muscle aches and pains when I use them too much. Right now, the mental stress knowing none of this gets better is getting to me, And I donāt think I handle it as well as some.
Cool fall days coming this weekend, though, and we are hosting our daughters 27th birthday dinner with her boyfriend and an elderly friend of the family. Masks, distance, and crab cakes ordered from Maryland. A winning combo! Kevin
Beauty is still everywhere, though. Hereās a pic of the swamp sunflowers in full bloom around our pool.
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lisa g
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Kevin-sorry to hear about your wife hopefully everything is negative. My daughter had the same scare being a teacher also. She tested negative. Don't worry Governor Disastrous says we're turning the corner 
.
I can relate to the car issue. Last year we had a recall on ours. We had to take it in for a software update dealing with possible metal shavings being in the engine. We were told that it was causing engines to seize up. Well 2 days ago my husband said he was hearing a knock in the engine, thought it might be bad gas. Then it happened yesterday the check engine light came on. He called the dealer and was told the engine was going don't drive the car. They have to replace the engine. Luckily it's covered under the recall so it's on their dime. Unfortunately timing is bad as we're leaving this weekend for up north so the car will sit in the garage until we get back.
On the ALS front, I'm feeling some slight progression but I'm still functioning. I'm sure your handling as well as you can. All I can say is thank God for drugs!
Your daughter's birthday sounds like it will be fun.
Love the flowers.
.I can relate to the car issue. Last year we had a recall on ours. We had to take it in for a software update dealing with possible metal shavings being in the engine. We were told that it was causing engines to seize up. Well 2 days ago my husband said he was hearing a knock in the engine, thought it might be bad gas. Then it happened yesterday the check engine light came on. He called the dealer and was told the engine was going don't drive the car. They have to replace the engine. Luckily it's covered under the recall so it's on their dime. Unfortunately timing is bad as we're leaving this weekend for up north so the car will sit in the garage until we get back.
On the ALS front, I'm feeling some slight progression but I'm still functioning. I'm sure your handling as well as you can. All I can say is thank God for drugs!
Your daughter's birthday sounds like it will be fun.
Love the flowers.
Dee Dee 0617
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- Nov 27, 2019
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- 11/2016
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- Escanaba
It's a cold wet, gray day. Being paralyzed with no-one to take you anywhere. Truth be told where is there to go. I am usually so good about not getting stuck in the ALS mire, today it's too much. I haven't gotten out of bed in weeks. I made the decision not to be wrestled into clothes like a rag doll. Even the smallest questions bother me. How does that seam feel? I bite my tongue, because I have verbally drawn first blood so many times. Then trussed up like a hobos belongings and deposited in a chair sum 60 feet from where you where. I hate this. I am here.
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Kevin, You have a beautiful oasis in your yard.
I can't tell you how sorry I am about your wife and all the other teachers being exposed. Praying for a negative. I've been sneezing this week, too. No temperature or other issues. It comes and goes so I'm thinking either the work they're doing on the outside of the condo causing lots of dust or something in the air.
Add me to the car recalls. I've been in twice this year for three recalls and again for a flat tire. All on a car with less than 7,000 miles on it.
Lisa, I don't even want to get into the crap people have said to me about beating it or living years like Stephen Hawking. My SIL is convinced I've come up with a supplement cocktail that will cure me. I wish.
My main "issue" this past month is plantar fasciitis. I went back today and he sold me orthotics for my running sneakers. He wanted to do another shot of cortisone but I asked him to wait a week. The plan is if the orthotics don't alleviate the pain, he will prescribe physical therapy. If PT doesn't work, he will MRI the foot just to make sure he hasn't missed anything. He did say my gait was good.
TippiLeigh, hoping you get another PLS dx.
Lisa, I'll be praying you have a safe trip and you enjoy the beauty of Fall up North.
I can't tell you how sorry I am about your wife and all the other teachers being exposed. Praying for a negative. I've been sneezing this week, too. No temperature or other issues. It comes and goes so I'm thinking either the work they're doing on the outside of the condo causing lots of dust or something in the air.
Add me to the car recalls. I've been in twice this year for three recalls and again for a flat tire. All on a car with less than 7,000 miles on it.
Lisa, I don't even want to get into the crap people have said to me about beating it or living years like Stephen Hawking. My SIL is convinced I've come up with a supplement cocktail that will cure me. I wish.
My main "issue" this past month is plantar fasciitis. I went back today and he sold me orthotics for my running sneakers. He wanted to do another shot of cortisone but I asked him to wait a week. The plan is if the orthotics don't alleviate the pain, he will prescribe physical therapy. If PT doesn't work, he will MRI the foot just to make sure he hasn't missed anything. He did say my gait was good.
TippiLeigh, hoping you get another PLS dx.
Lisa, I'll be praying you have a safe trip and you enjoy the beauty of Fall up North.
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Dee Dee,
I'm so sorry. There's nothing I can say to make it better and that is the true sadness with this disease. Sometimes I get mean and say things I later regret. Other times, not so much.
I'm so sorry. There's nothing I can say to make it better and that is the true sadness with this disease. Sometimes I get mean and say things I later regret. Other times, not so much.
swalker
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We had rain, snow, and a bit of wind on Sunday. That chased the few remaining fall leaves from the trees. I was able to go on a wheelchair ride both Monday and Tuesday and saw that indeed fall is pretty much wrapped up here.
My new Permobil F5 wheelchair is still in the shop in Denver being diagnosed for the problems I have identified so far. I expect to hear back by the end of the week on their prognosis. We are still waiting for final authorization to have the motors replaced on the airline-damaged C500. It still amazes me how long these things take. The F5 was stolen in November 2019 and I still don't have a functioning replacement. The C500 was damaged in late January 2020 and it is still not fully functional. I guess I need to continue to work on my patience.
Our kittens are now 15 months old. They are still a bit in the inquisitive/destructive stage. Thus, they are banned from our study, where we have too many interesting things for them to get into. Today, while my wife and I were in the study, the door popped open and our male cat walked in, really proud of himself that he had figured out how to operate a door knob. He has done so twice now. If we want to keep him out, we will have to start locking the doors!
Steve
My new Permobil F5 wheelchair is still in the shop in Denver being diagnosed for the problems I have identified so far. I expect to hear back by the end of the week on their prognosis. We are still waiting for final authorization to have the motors replaced on the airline-damaged C500. It still amazes me how long these things take. The F5 was stolen in November 2019 and I still don't have a functioning replacement. The C500 was damaged in late January 2020 and it is still not fully functional. I guess I need to continue to work on my patience.
Our kittens are now 15 months old. They are still a bit in the inquisitive/destructive stage. Thus, they are banned from our study, where we have too many interesting things for them to get into. Today, while my wife and I were in the study, the door popped open and our male cat walked in, really proud of himself that he had figured out how to operate a door knob. He has done so twice now. If we want to keep him out, we will have to start locking the doors!
Steve
Fusia
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It definitely has turned fallāish here, most of the trees have lost leaves and it has turned very windy, rainy, and chilly today. My brother and sister in law left a few days ago, after visiting for almost 10 days. While they did get quite a few little projects done for me around the house, 10 days was just a few days too long! So, i've been catching up on some sleep, reading, paperwork, and alone time.
One of the best things to happen while they were here was that we saw a great horned owl sitting up in a tree right outside of my patio. We only happened to notice it because there were about 30 crows and magpies sitting up there screaming at the owl - they were making quite a racket! It took us a while to realize what was going on - the crows and magpies finally gave up and we watched the owl scan for his evening meal for quite a while before he flew off. My brother was able to get a few pictures of the owl.
Last Saturday, I went to visit my old neighbors who my two dogs now live with. The dogs were ecstatic to see me and we went for a nice walk around the neighborhood. But, they have really settled in nicely and seem to be so happy in their new home. It was also great to visit for a while with my old friends. The weather was still nice, so we were able to hang out in their backyard and catch up.
I've been thinking a lot lately about my "end game" - really more practical than sad or macabre. I don't know what my line in the sand will be, but I just want to be ready for it when I get there. So, i'm trying to get as many loose ends wrapped up as I possibly can so I will have less to worry about down the road.
I did get a new front door lock installed. It's set up to work with Siri and it also works with my Apple Watch - as I approach the door from outside, the lock automatically unlocks. Very cool!
I hope everyone has a good week.
One of the best things to happen while they were here was that we saw a great horned owl sitting up in a tree right outside of my patio. We only happened to notice it because there were about 30 crows and magpies sitting up there screaming at the owl - they were making quite a racket! It took us a while to realize what was going on - the crows and magpies finally gave up and we watched the owl scan for his evening meal for quite a while before he flew off. My brother was able to get a few pictures of the owl.
Last Saturday, I went to visit my old neighbors who my two dogs now live with. The dogs were ecstatic to see me and we went for a nice walk around the neighborhood. But, they have really settled in nicely and seem to be so happy in their new home. It was also great to visit for a while with my old friends. The weather was still nice, so we were able to hang out in their backyard and catch up.
I've been thinking a lot lately about my "end game" - really more practical than sad or macabre. I don't know what my line in the sand will be, but I just want to be ready for it when I get there. So, i'm trying to get as many loose ends wrapped up as I possibly can so I will have less to worry about down the road.
I did get a new front door lock installed. It's set up to work with Siri and it also works with my Apple Watch - as I approach the door from outside, the lock automatically unlocks. Very cool!
I hope everyone has a good week.
- Joined
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- 01/2020
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I'm jealous of everyone reporting in about fall weather from different parts of the country. Here in SoCal, we don't really have seasons - just small fluctuations in temperature, and maybe a little rain in the winter months. It was 80 degrees here today - pretty much the same for the rest of the week. I would love some 'football weather' and maybe a little fall color, but that doesn't happen in these parts.
Covid is still rampant here, and all 3 kids (two high-schoolers and college boy) are schooling from home. I like that they're here, though I realize it's totally abnormal. Wife sort of likes it also - all her chicks are in the nest. For me, the more time I have with them while I can function normally, the better.
My physical condition seems stable, though some days I just 'feel' my disease more than others. Monday was one of those days. My legs were sore, and I walked into a wall, and then my mind freezes on the reality of my declining motor coordination. I try to let it go, with varying degrees of success. Yesterday and today were better. I actually went to a shopping mall briefly today for the first time in months. The place was dead.
Sending good vibes to all.
Covid is still rampant here, and all 3 kids (two high-schoolers and college boy) are schooling from home. I like that they're here, though I realize it's totally abnormal. Wife sort of likes it also - all her chicks are in the nest. For me, the more time I have with them while I can function normally, the better.
My physical condition seems stable, though some days I just 'feel' my disease more than others. Monday was one of those days. My legs were sore, and I walked into a wall, and then my mind freezes on the reality of my declining motor coordination. I try to let it go, with varying degrees of success. Yesterday and today were better. I actually went to a shopping mall briefly today for the first time in months. The place was dead.
Sending good vibes to all.
TippiLeigh
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@EricInLA I totally feel you on the weather! Itās in the low 90ās here for the next few days 
Iām also like your wife...Iām not complaining that my two youngest are home with me right now. I feel like itās a close bonding I would never have gotten otherwise. My oldest two live and work together. Unfortunately I donāt see them except for the occasional ādrive-byā in masks. I also get feeling your disease on certain days more than others, making the realty wash over you more than youād like.
@Fusia I need to look into that door lock! I was just telling my husband that Iād like to start switching things over to voice activated or remote activated wherever possible as things start to become more difficult. Also, I just really love technology. He calls me the gadget queen LOL!
@swalker Iām so sorry about your wheelchair issues! That sounds sooooo frustrating! But those kittens, although a handful, sound like a lot of fun. I love it when they figure stuff out and are very proud of themselves hehe.
@KimT Iām sorry about your ongoing feet issues. I was given an orthotic for my left foot because of hip & back pain about a year and a half ago by a physical therapist. He said it would help my gait and my high arch, thus helping the hip pain. Now Iām realizing that what he was seeing was the beginning of drop foot and weakness in that left ankle/leg. I do think the orthotic helped kind of level things out though.
@Dee Dee 0617 Iām sending you so much love. Youāre going through A LOT! Of course you donāt want to be thrown around like a rag doll. You can choose to do whatever makes you feel comfortable.
@KevinM Iām so sorry you and your wife are having to deal with potential COVID exposures! Teachers did NOT sign up to put their lives on the line. Itās an impossible situation. I hope that with every passing day, we are one step closer to a vaccine and an end to all of this. I love the photo also! We had a random sunflower grown near our pool (Iām guessing a bird or the wind brought it) and itās a monster, growing wild! But itās so pretty, so we just let it go crazy lol.
Iām also like your wife...Iām not complaining that my two youngest are home with me right now. I feel like itās a close bonding I would never have gotten otherwise. My oldest two live and work together. Unfortunately I donāt see them except for the occasional ādrive-byā in masks. I also get feeling your disease on certain days more than others, making the realty wash over you more than youād like. @Fusia I need to look into that door lock! I was just telling my husband that Iād like to start switching things over to voice activated or remote activated wherever possible as things start to become more difficult. Also, I just really love technology. He calls me the gadget queen LOL!
@swalker Iām so sorry about your wheelchair issues! That sounds sooooo frustrating! But those kittens, although a handful, sound like a lot of fun. I love it when they figure stuff out and are very proud of themselves hehe.
@KimT Iām sorry about your ongoing feet issues. I was given an orthotic for my left foot because of hip & back pain about a year and a half ago by a physical therapist. He said it would help my gait and my high arch, thus helping the hip pain. Now Iām realizing that what he was seeing was the beginning of drop foot and weakness in that left ankle/leg. I do think the orthotic helped kind of level things out though.
@Dee Dee 0617 Iām sending you so much love. Youāre going through A LOT! Of course you donāt want to be thrown around like a rag doll. You can choose to do whatever makes you feel comfortable.
@KevinM Iām so sorry you and your wife are having to deal with potential COVID exposures! Teachers did NOT sign up to put their lives on the line. Itās an impossible situation. I hope that with every passing day, we are one step closer to a vaccine and an end to all of this. I love the photo also! We had a random sunflower grown near our pool (Iām guessing a bird or the wind brought it) and itās a monster, growing wild! But itās so pretty, so we just let it go crazy lol.
