PALS ROLL CALL NEW THREAD (PALS ONLY) Wednesday if possible or whenever

blitzc

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Apr 20, 2018
Messages
201
Reason
PALS
Diagnosis
01/2018
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US
State
OH
CTMary, the issues you face with others caring for you are similar to many of us. It's a wonderful feeling to turn it into laughter!!😂 Hope your day is a pleasant one. 🌞
 

beauty4everyone

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Jul 5, 2018
Messages
153
Reason
PALS
Diagnosis
04/2018
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US
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Ville
Couldn't help "but" (no pun intended) smile:). Boy, in a few years your granddaughter is going to be really surprised. ;)
Ah, the joys of growing up.

I too, have discovered others will be caring for areas only the gynecologist sees. Oh, well. One day at a time. :cool:B.
 

mytmouz

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Joined
Aug 17, 2019
Messages
20
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
Dealing with trying to find an agency to provide some I. Home health. I am failing pretty fast, and can't help my family much with my care. The ones who are available, are available due to health issues of their own. So, I am going to get someone to come in during the morning to dress me, and get me in my power chair. We seem to get me out of the chair, and in bed, much better than we can do the opposite...
 

KarenNWendyn

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Jul 29, 2017
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2,577
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PALS
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07/2017
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OR
Happy Wednesday everyone.
Used the Hoyer at the YMCA pool to help get me in and out of the pool. The Y has their own Hoyer. It’s BYOS (bring your own sling). I’m pleased to say that went well and saved energy and reduced stress for both my CALS and me. I was able to do some ROM exercises in the pool. I have to be careful not to overdo it, which is contrary to my prior way of life.
 

mytmouz

Member
Joined
Aug 17, 2019
Messages
20
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
Waited all day for another contractor no show, trying to get a bedroom door widened for wheel chair access. Then the rod that turns to raise and lower my hospital bed fell out. All in all a typical day in my life...
 

nona

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Joined
Oct 1, 2018
Messages
158
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
Rough start to my day too... My bipap mask broke at 330 AM and it took me an hour to be able to push my medical alert button, which is on my ankle because my feet and toes used to work better than my hands and fingers . In the process I pushed my blankets off the bed. feel stupid calling EMS for something like that, but it had to be done. it is nice to be awake this early though. I love quiet mornings.
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
216
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
I've been AWOL for a while, but am trying to get back to reading and an occasional post. Progression still generally slow, but definite mainly in loss of muscle, esp leg strength. Speech getting worse but can still do business on the phone so must be understandable.

Fall is unmistakably in the air. Speaking of fall I had one a week ago, first since last Nov. Fortunately a neighbor was able to lift me onto sofa--my wife couldn't nor could I one my own. Still on Radicava, no idea if it's helping. Preparing for move to a winter home in Tucson in Dec --lots to do to get ready. Wishing you all a happy fall and mild winter.

Ed
 

blitzc

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Joined
Apr 20, 2018
Messages
201
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
Cool weather has arrived here in Ohio with cloudy skies, stiff breeze and the need for a jacket. The animals are making preparations including the honking geese and hungry chipmunks at my bird feeder!

Just returned from my pulmonologist with a good report. My FVC is 64% today which is essentially the same from 3 months ago. He believes the Trilogy use at nighttime is doing its job. My daughter and I did agree that shortness of breath is worsening with any kind of exertion. So, therefore, I sit! 😉

The exciting news is that tomorrow, my husband and I leave for a week in Cancun at all all-inclusive resort. We are using our retirement funds to travel while it is still possible. It is not easy to travel, but not impossible. Hopefully he won't need a vacation to recover! We have never traveled to the tropics-something new for us. 🤗

Tropical drink cheers to all!!!!🍹🍹🍹🍹🍹
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,714
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Have a wonderful trip. Hoping for pictures!

Congratulations on the pulmonary plateau. Long may it remain!
 

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
153
Reason
PALS
Diagnosis
04/2018
Country
US
State
Ville
Getting someone in to help; effectively dealing with unexpected events; "paddling" in the pool; quiet mornings: looking forward to enjoying a warm winter home; vacation adventures; experiencing the harbingers of autumn; a good health report: Large blessings in "small" things are all around us. Thank you for sharing. You lifted my spirit. May they abound. B :cool:.
1570292592262.jpeg
 

mytmouz

Member
Joined
Aug 17, 2019
Messages
20
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
On my third day of an in home caregiver, as my wife had to return to work. 3 hours a day is all I can afford. I have some feelers out for some assistance, but it seems everyone is waiting to see if I win my Medicare appeal( I was treated for CIDP while waiting on ALS confirmation, and surprisingly got my disability without being turned down on the first try) And they also are waiting to see if I get a Medicaid waiver...
 

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
153
Reason
PALS
Diagnosis
04/2018
Country
US
State
Ville
Hi, mytmouz, Check with your ALS Association. They might have suggestions. Good luck. B :cool:
 

lisa g

Active member
Joined
Apr 17, 2019
Messages
94
Reason
PALS
Diagnosis
04/2019
Country
US
State
Florida
It finally looks like hurricane season is starting to quiet down. We're all packed and are ready to take off to up north for a couple of months. We're what you call reverse snowbirds instead of going south to the warmer weather for the winter we head up north for the colder weather. I love to see the fall leaf colors.

While in Florida we volunteer with a cat sanctuary. My husband and I are involved in the TNR (trap, neuter, release ) program. We've trapped 4 this year on our property and have taken care of and adopted 3 into new homes. The 4th one that we have taken care of we call Jessie James. We have become attached to him and decided he was a keeper. Unfortunately I haven't had enough time to acclimate him into being fully indoors so I'm pretty bummed that he won't be traveling with us up north :(. Luckily the director of the sanctuary has offered to let him stay with her at the sanctuary while we're away. Happy for him that he'll be safe sad for me that he's not with us.

Looking forward to the cooler weather in Ohio.
 

KevinM

Active member
Joined
Mar 30, 2019
Messages
77
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
It finally looks like hurricane season is starting to quiet down. We're all packed and are ready to take off to up north for a couple of months. We're what you call reverse snowbirds instead of going south to the warmer weather for the winter we head up north for the colder weather. I love to see the fall leaf colors.

While in Florida we volunteer with a cat sanctuary. My husband and I are involved in the TNR (trap, neuter, release ) program. We've trapped 4 this year on our property and have taken care of and adopted 3 into new homes. The 4th one that we have taken care of we call Jessie James. We have become attached to him and decided he was a keeper. Unfortunately I haven't had enough time to acclimate him into being fully indoors so I'm pretty bummed that he won't be traveling with us up north :(. Luckily the director of the sanctuary has offered to let him stay with her at the sanctuary while we're away. Happy for him that he'll be safe sad for me that he's not with us.

Looking forward to the cooler weather in Ohio.
Safe travels, Lisa! Today is our daughter Allanah’s 26th birthday. She is such a fine, caring, young person and a reason I hold out hope for the future, as bleak as it seems at times these days. Looking forward to a big birthday dinner with her tomorrow (lobster thermidor). All the best to everyone, Kevin
 
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