you know what bugs me?

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,601
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
If I had one of those issues then listened to the trailing possible side effects, some even saying
possible stroke or death.... I'd think what I have ain't that bad.

Then the law firms wanting you to sue after one of the meds left you disabled rather than just
sick.

And insurance companies with their flood of millions and millions of dollars worth of commercials...
is there enough money left to pay your claim?

Then the lawyers run commercials saying the insurance companies are not on your side...
how much do you really end up with after they take their cut to pay for their commercials?

I have wore out a clicker trying to avoid them but.... how did so many of the network shows
agree to take commercial breaks at the same time?

Ann has a favorite movie channel, they play 12 minutes of the movie then do 4 and a half
minutes of commercials. The original movie was 2 hours but.... on that channel it starts
at 1 PM and doesn't end till 4 PM. She plays Candy Crush during the commercials.
Not me. :)
 

KimT

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Joined
Nov 18, 2014
Messages
3,694
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
What bugs me lately is people coming to cards on Friday afternoon coughing and sneezing. I'm not the only one with health issues. We have two with COPD and one with renal issues, just short of dialysis.
 

KarenNWendyn

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Joined
Jul 29, 2017
Messages
3,424
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
I saw my dental hygienist this week. Her assistant was coughing and sneezing. She wore a mask and gloves, but I was nervous. Why can’t health care workers stay home when they’re sick?
 

Tedstehr

Distinguished member
Joined
Aug 25, 2017
Messages
199
Reason
PALS
Diagnosis
08/2017
Country
CA
State
BC
City
New Westminster
Merry Christmas to all of you and best wishes for the new year.

We are living the dream here in New Westminster! Our relationship is stronger than ever and our intimacy is off the charts. For example, my wife touches my penis dozens of times a day. She gazes into my eyes as she inserts my catheter or guides me into the urinal. We now spend so much time talking and joking. Like yesterday while I was up in the sling and she wiping my bum we talked about the epic messes we had to deal with in our child's diapers when they were babies. We laughed and laughed until some more poop came out. I often whisper sweet nothings into her ear. I literally mean nothing because sometimes no sound comes out.

We have a more open relationship now. Most days, young, exotic women come over and undress me, bathe me and put me to bed.

We go out together too. We enjoy outings together to hospitals, clinics, specialists and emergency rooms.

I have been enjoying lots of tasty, home cooked, pureed meals. I love not choking for three hours straight when I struggle with different food textures. No one enjoys choking on phlegm they can't clear from their airways and feeling like they are drowning on their own secretions. LOL!

I am not sure if I will make it to next Christmas or if I will be able to move any part of my body. But I will look forward to the pretty lights and tired music. And if I am alive, I will blink Christmas greetings to you!

Hope you are enjoying life as much as us!

Ted and family
 

KimT

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Joined
Nov 18, 2014
Messages
3,694
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Merry Christmas to the several friends out of hundreds who still contact me when it's convenient,

Daytona Beach Shores has never been better. Instead of running 10 miles on the beach each morning I watch 90-year old men and women play golf each day. I can still walk but I'm in so much pain, I couldn't swing a golf club if my life depended on it.

I'm not sure if any of my relatives, except my brother with dementia, are alive because I received ZERO Christmas wishes or cards and no phone calls even though my telephone number has been the same for 30 years.

I managed to heal an anal fissure this year and it feels mighty good not to feel like I'm Sh^&&ing glass now. I do have some internal hemorrhoids that make sure I have occasional spasms but a good squirt of lidocaine helps a lot. I'm grateful that I was able to buy myself a few Christmas presents. A few of my favorites were CBD oil, Colace, dry eye drops, and men's sneakers I could wear to church.

In preparation for the upcoming year, I got new lenses in both eyes. It only set me back $6,000 and that's with Medicare paying their "fair share." Hurray for Capitalism. The drops only set me back several hundred dollars, with Medicare Part D. Thank you President Trump for making America Great Again.

My Bidet broke so my last Christmas present was a new one. Lucky me. It was on sale at Amazon for less than $500. By the way, Amazon paid ZERO in income tax. Praise God because I paid $18,000. Thank you again, Mr. President.

My daily routine is a joy. I eat, poop, painfully walk down to the mail room and, if I'm lucky, might run into someone I know. The rest is TV and the computer. I'm progressing slowly, so that's something. I'm taking bets on if my money or I will last longer.

Well, people, I hope your year is filled with thoughts and prayers and I hope I win the lottery so I can see all my long, lost relatives come out of the woodwork.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
295
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
You know those hundreds of friends who we haven;t heard from? All those who needed your help? Who leaned on you in their time of need? Who had well wishes for you when they found out about your diagnosis and offered help for any kind of need?

They have loads of time to post on Facebook ridiculous nonsense but can't take 1 minute to text or email a message of any kind...just "hello".
 

KarenNWendyn

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Joined
Jul 29, 2017
Messages
3,424
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
I love the Holiday greeting letters.
I don’t know what mine would be; I’ll have to put some thought into it. I might make some of these points (or at least enjoy thinking about making them):

Hey folks, guess what? I had a bowel movement today. I had one yesterday and the day before. But I don’t have them daily. And they don’t come without assistance, often in the form of a helpful finger stuck up my you-know-what as well as someone helping me transfer to and from the toilet and providing cleanup as I can not wipe myself. But when I have a good BM, it is often the highlight of my day! ALS is not pretty, but I can’t help grinning about my proud moments. You see that while you and yours are sunning yourselves on a sandy white beach, skiing in the alps, or playing 18 holes on the green of your choice, I hope that the thought of my success on the toilet will give you some real perspective.
 

Dee Dee 0617

Active member
Joined
Nov 27, 2019
Messages
97
Reason
PALS
Diagnosis
11/2016
Country
US
State
MI
City
Escanaba
Oh, they understand the meaning of no treatment, no cure. The sad fact is they can't accept it. Truth is they don't have to. We have to. My son got tired of me answering the how are you feeling, with like a dying woman. Now it's become a running joke. He'll say alive? I answer yep. I've stopped going out to eat. Just feel like I'm on display. Americans really do want a world that looks good. Without handicaps. No wheelchair, prosthetic, no mental illness, drug abusers, poor, homeless, nothing uncomfortable.
 

KimT

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Joined
Nov 18, 2014
Messages
3,694
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Today I ventured out to a new store that supposedly specializes in good, organic produce. Had I needed a PWC, there would have been nowhere to park a van. Two tiny disabled spots and both were taken. After I got in the store, I realized it was a waste of time PLUS tons of people coughing and sneezing. I left and went to an overpriced health store and paid twice as much as my local grocery store. Lesson learned.

A friend emailed me from CA and said in San Jose there was a run on canned goods and toilet paper. She said forget hand soap. It has been gone since February. I was lucky because I use Purell in church and have a dozen small bottles and several large ones on hand.

It's like the country is preparing for a hurricane. Even water is flying off the shelves. I guess people are stocking up to stay inside for years. Reminds me of the kooks that lived off the grid because they were afraid of the government taking their guns or putting a chip in their brain.
 

ChristineRK

Active member
Joined
Jun 6, 2019
Messages
67
Reason
PALS
Diagnosis
08/2015
Country
US
State
OH
City
Westlake
(Sorry gentlemen....but here it comes)

I thought I had finally begun menopause last fall...and then today happened! 😩 🤬
I was going to ask - (sorry, fellas!) - is there any correlation to ALS and or stopped periods/menopause? Or missing 3 months and then 'surprise!'. Has anyone noticed? I used to be 28 days like clock work - then I missed 3 months and then in the 4th - 'it' came back. BUT I have to admit - once it did, my body felt 'better' - like hormonally. Any connection? Or do you think if I asked my doc to go on birth control (to make them more regular and lighter) that is something that they would consider with ALS? That way I would know exactly when, and have the proper hormones and also have a shorter/lighter ones when it comes?

Thanks for the advice/input!

~Christine :)
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,445
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
There is some thought that estrogen may be somewhat protective. Birth control pills may increase the risk of clot which is also a risk for PALS from immobility. I would strongly consider a gyn consult with a view to stopping it permanently. ALS / non working hands and a menstrual period are not a pretty combination. Ablation may be an option
 

nona

Distinguished member
Joined
Oct 1, 2018
Messages
284
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
I have a Morena IUD and it significantly decreased my periods and now they're gone completely
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
792
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
I did endometrial (uterine) ablation to stop my periods once my hands were no longer capable of changing pads/tampons. It was a very simple and quick procedure. I have not had a single period since. I still get hormonal once a month but there is no bleeding. I strongly recommend going this route. No hormones. No IUDs. Just one easy procedure.
 

KimT

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Joined
Nov 18, 2014
Messages
3,694
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
If I had a life do-over I would have had my "parts" removed when I hit 40 but I was lucky. I was very low body fat and between 40 and when "it" stopped I only had it for a few days every 34 days. No big deal when it stopped. I was elated and that was at age 52. I was finally rid of migraines and my only symptom was sweating a lot. I just looked at it like a detox without the sauna.

Kristine, the ablation is definitely the way to go. My niece had one at age 48 for extremely heavy periods and said she wishes she had it done as soon as she finished having kids.
 
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