Calling all PALS! ( PALS only please, thank you)

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Nikki J

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Mar 22, 2012
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16,376
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
We all have been way too quiet!

I know it is hard for many to post and many of us have been struggling physically and/or emotionally.

What have you all been doing? I was lucky to have a trip already planned before my sister's death and last month was able to spend 2 weeks with our cousins which really helped.

Warm weather and sunshine have also arrived - also helpful.

Needing to make some changes to accommodate progression but continue to feel fortunate it is not faster.

Frustrated to find my 2 medical encounters so far this year ( different providers- different institutions) were both billed incorrectly so calling and emailing to get those fixed ( no my diagnosis is NOT " flat feet"!!)

Hoping to hear from you even just a little bit, my dear friends
 
Flat feet. I wish.

Glad you got some fun! 8^)

Been a bad week here. General crappy feeling topped off by giving up on standing transfers and going to full time BiPap.
 
Well we are in the final couple of weeks of a whole house remodel. It started with just enlarging the bathrooms and making them accessible, then we decided to have the hardwood floors refinished, then I started thinking about my wife and potential repairs when I'm gone so we did the whole house! New roof, new siding, put stacked stone on our front porch and around the foundation of the house, new garage doors with the stacked stone between them as well, new gutters and downspouts and ripping out the carpet in the two guest bedrooms and replacing with hardwood.

All these things we both talked about doing for 25 years. Well when I got access to my life insurance I said Now Is The Time! Now my wife has her dream house and won't have to worry about having any big repairs to the house. But it has been a grueling 5 months. I'll be glad when they are outta here!

Vince
 
Not a great week here, either.
My 3-week-old PEG fell out, requiring me to go have a new tube installed, and just in time, since I'm now choking on any food i try. Had my first tube feeding today. No issues, but i prefer the old fashioned way of eating.
My 'good' (HA!) arm is rapidly weakening, so i get to do even less for myself and rely even more on others.
But, my tobii was delivered yesterday so that's a nice one for the plus column.
 
So sorry Greg. Hope the full time bipap helps you feel better.

Vince- 5 months would push me over the edge! I had windows replaced a few years ago. I think it was a week. It felt like a year! Good for you for taking care of your wife this way.

Azwxman, glad you have the tube but sorry about needing a replacement so fast. And missing food- it stinks. Can you have a taste of pudding or anything? My sister managed that for quite a while after her swallow was almost gone. And so glad you have the tobi. Big plus!
 
Good idea, Nikki, getting us all to check in.

The good: enjoyed a great visit from college friendS this week, I gaze was approved and received, still going to the pool, my breathing is holding steady, my caregiver is amazing and really help the situation around the house

The not so good: starting to have choking episodes which means I'm getting closer to peg, transfers standing are getting very difficult, I gaze requires lots of practice!

Good to hear from you all.
 
Azwxman, where did you have your peg done. Sorry you are having trouble with that.
 
Hoping to get the pain under control so I can take a trip to the Gulf (where the water is above 85 in the Summer and no waves to knock me over.) I have a friend who wants to go and split the cost so we can stay at a nice beachfront hotel with lots of good seafood. We did this last year when I was going through my diagnosis.

Went to a local chapter meeting yesterday and had a nice meal out with 4 other PALS and their CALS after the meeting.
 
Kim, I hope you get to enjoy the trip. Sounds like a beautiful place.
 
AZWXMAN sorry to hear your peg came out, hope it was replaced and that you are doing better now.
 
Hi Kay glad you can see some good. Please don't delay the tube too long. You know my sister's story! Happy you have the eye gaze!

Kim, I hope you get to go on your trip. It sounds awesome. Where exactly is it? I need warm calm waters too!


Scotia, thanks for chiming in. How are you?
 
Well, I am not a PALS, but I am a PwRRUMNBSUD (person with a recently revoked UMN, but still undiagnosed, disorder), so I hope that counts.

I graduated last week with my doctorate degree after 4.5 years of being in school, running a business full time, and chasing down a mystery neuro diagnosis.

I participated in the formal hooding and graduation ceremony and then had a really nice dinner with my family and a few friends. I'm really proud of myself for finishing.

Nikki - were you able to get around ok during your trip? I know you were concerned about it.
 
Hi Suzannah
How do you pronounce that??
Congrats ( again) on doctorate. Well earned!

Yes the trip went really well. My family ( especially one cousin) were really really helpful and considerate. They are the c9 side of my family so sadly have lots of experience with MND. Thanks for asking

PS in this context PALS= PWMND which is almost as impossible to pronounce as your acronym Suzannah!
 
Back from DC and advocacy day. Great experience ! Learned lots met many pals & Cals. Pulmonary test tomorrow @ va. Feeling good but did have a fall today moving to get in shower w/ o braces on. Got to watch this as legs do not have strength. Love ya all chally
 
Nikki- I can eat pudding or mashed potatoes, things like that. But I have been choking on everything and getting scared/leery of putting anything in my mouth.

Azgirl- my peg was placed at the VA. As far as I know they did a great job but the saline filled balloon that holds it in place inside my stomach failed, allowing it to fall out.

I'm doing much better now.
 
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