CALS Roll Call Continued

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,591
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Buckhorn, sending you strength. So happy you could make the trip and arrived safely. Praying for you when it’s time to travel back again. How long will you be staying south?

Hugs,

Sue
 

Buckhorn

Senior member
Joined
Jan 3, 2016
Messages
725
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
PA
City
Small town
Thanks Sue! We are not returning home until at least mid-March. We have a cottage rented for the month of Feb. and after that .....?? Although I miss our dog Snickers very much and our 3 cats, I do NOT miss the bitter cold and the confinement in the house that that entails for Dave. We live in a very rural area, and our driveway is nearly 1,000 feet long & uphill the entire way. So, if a bad ice storm hits followed by severe cold, that would mean I would not be able to get Dave out of the house (in the van) for a long time. That is why the travel stresses would be worth it in the long run. My brother & SIL are also arriving on Feb. 6th and will spend 2 weeks with us in FL. I am so looking forward to their combined great senses' of humor and companionship!

I was thinking of looking into a cruise again after our Feb. cottage rental, but that will depend largely upon Dave's declining status, price$, and whether any cruise companies I would consider (not Carnival... party barges filled with Spring Breaker's!) have a cabin with roll-in shower available. I'm probably spending $ I should be saving for EOL (end of life) care, etc., but I have vowed to make sure to allow Dave to enjoy whatever he is still able to enjoy, while he can. If we don't go on a cruise, we are considering visiting Savannah, GA or the Pan-Handle area of FL (neither of which we have ever visited). We are in no hurry to get home until at least mid-March and my super-hero neighbor Chris is watching our house and spoiling our dog! I am grateful!

Scaredwife - Deb, how are you? I just read your most recent post again. Seems like there are so many here struggling and going thru ever increasing troubles.
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,591
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Buckhorn, I totally feel you on the cold weather and the limitations to our PALS. Of course I’d love to be a snowbird myself.

My friends actually live in the panhandle. Haven’t seen the whole thing, but very nice. While it still get HOT in the summer, they get lower temps in the winter. Very nice area. I’ve never been to lower FL.

Enjoy yourself.

Hugs,

Sue
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,242
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Great to see so many posts in here this past week!

Have I said I hate ALS lately, I think I will just in case xxx :lol:
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
611
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
Buckhorn,

Glad you made it safely to Florida! I hope you have many, many warm and beautiful days while you're there. I'd love to talk hubby into making a trip somewhere warm right about now. I have always disliked the winter.

They're predicting snow here tonight and again over the Super Bowl weekend. (E-A-G-L-E-S!!!!! )

I too was hoping to be a snowbird! Enjoy for all of us!
 
Last edited:

scaredwifetx

Forum Supporter
Very helpful member
Joined
Jul 25, 2015
Messages
1,573
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
City
Dallas
Thanks for checking on me Buckhorn. I am actually doing ok. Over my bug, landed a large contract at work and have been busy around the house. Steve seems so very weak but he gets up everyday, sits in the living room and is still here so can't complain to much.

Glad you are having a wonderful trip. You so deserve it.

A big hug to everyone else here. January was a tough month for a lot of us. Stay strong and reach out when you are feeling overloaded, down or angry. It helps.

Hoping for a quiet Feb for all.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
727
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
City
Stuttgart
My PALS is still in the hospital after starting his breathing mask adaption Tuesday last week and having a PEG placement this Monday. He's a natural with breathing through the mask and the procedure went very smooth, but his overall condition is incredibly weak and his infection values (?) are up and he had a little temperature in the evenings. Yesterday they put him on antibiotics and told him, that he needs to stay 8-10 days longer, which drove him over the edge. He hates being in the hospital, it wears him out, every loss and dependency is apparent, there's no relaxing. I want him out of there as soon as I don't have to be afraid that he might collapse at any moment (because then I'd have to call an ambulance that would drag him to a hospital that doesn't know about ALS the way they do in this very good neurological clinic). He's made a deal with the doctor. Antibiotics through the drip until Monday, then home and into my care with oral antibiotics.
He fears that this whole procedure will take a greater toll than it will be a benefit to him. I tell him to please wear the breathing mask as much as possible as it is the only way I see for him to save energy. And he has zero energy left.

After being back and forth to the clinic four times in a week, I got hit with my period which means to horrible days of pain. I begged off for a the little R&R at home. I think I have to gather a lot of strength for the time to come and that's what I did. Tagged along some friends to go visit him today, the minimum one hour drive is much nicer with company. He was desperate to get out of there, nothing that would cheer him up.

I feel helpless and thanks to all of you guys I know that it's ok to not be ok with this f***ing disease and everything it entails.

I so hope that once he's home he will retain a little strength and be ok to take the drive to take a vacation with some friends in the South of France the first week of May. A mini version of Buchhorn's snowbird excursion. :- )
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,591
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Wish, here’s hoping your PALS heals quickly. I agree with getting him out of the hospital as soon as it’s safe to do so.

Hugs,

Sue
 

Buckhorn

Senior member
Joined
Jan 3, 2016
Messages
725
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
PA
City
Small town
Oh, Wish - I hope you get your PALS out of the hospital as soon as possible. Yes, what a depressing environment a hospital is (& in the US it entails an elevated risk of MRSA & other infections).

Deb, I'm glad to hear you are doing o.k.

For everyone else who has wished us well on our snowbird adventures, thank you very much and I will try to enjoy it as much as I can for all of you as well. OMG - what a comedy of errors this has been at times tho, and I wish I would have some days that are not so stressful. I am very pleased with Dave's physical tolerance so far. However, 2 days ago while backing the Permobil w/c out of the rear ramp of the van the legrest power strap caught on something and it ripped. Today I tore a hole in the large area rug at the rental cottage when said footrest (hampered by an ineffectual/torn leg rest lift strap) dug into it. I have not yet committed to memory the fact that our particular wheelchair does NOT do well on area rugs and any carpeting that is not glued down!! (remind me to tell you about the time we got stuck in a hotel elevator on a loose carpet ....... so much fun pressing the emergency button because a piece of carpeting has us trapped!).

So, this evening after returning from a trip to the beach to see sunset and grab a bite to eat I managed to steer the front left wheel of the Permobil OFF the portable ramp we have with us! I do much of the steering of Dave's chair, due to his limited hand control. I thought it would be better if I hit the ramp a bit faster than yesterday. Yeah, that was a smart move on my part; would have been fine if my steering was better! I had to get the portable lift, manage to get it finagled around the ramp (not textbook use / "do not try this at home style." One wheel of the lift was securely on the ground while one was a bit wonky to say the least!!). Anyway, while using the lift to get Dave out of harms way, once I swing him free of the Permobil I discover that one of the lift straps was literally through parts of the right armrest of the w/chair!! I had to grab a lounge chair cushion and place on the deck, lower Dave down to the cushion, get the offending strap released from the chair, re-attach the strap, and get Dave hoisted again. All the while I am staying calm (uhuh, I have been told I am "totally unflappable" under fire ....... my true strength!) and not telling Dave that one leg of the lift is not on the ground!! So, I manage to pull the lift back off of the ramp and onto the deck and, not once but TWICE pulling the edge of the lift over my unprotected, flip-flop sheathed toes. Yep - I left out a few wails, and found later that I literally peeled the skin back off one toe! O.K., now I have Dave safely on level ground in the lift, and for whatever reason (stress??) he has been farting up a storm for the past 2-3 minutes. We both got a good laugh out of that. Now, back to the 460# Permobil that has it's front left wheel hanging off the ramp. I put the chair into manual (push) mode and actually was able to back it off the ramp .... pretty easy since gravity was assisting me. Easy, except that I nipped the edge of my little toe on the opposite foot ..... the same one I nicked last week with said chair! You would think I would be wearing steel toed boots by now, right?! Well, I got Dave into the cottage and into the recliner chair. I was kinda pleased with my prowess and controlling the situation by myself and first and foremost "securing the patient's safety/removing them from danger" ...... danger I had put him in by my poor steering of the chair! We just recently got the assistant driver controller (in the rear) and IDK if it's just me but I hate the thing!! It is hair trigger sensitive! I need to see if there is a sensitivity switch on it that can be adjusted; there should be.

As I sit here writing to you I am enjoying my second glass of wine - boy did I need it!

Wish me better driving skills at negotiating the ramp?!

I intend to start my own thread soon, but not sure what to name the thread - "Unsafe at any speed"?

Hugs!!
 
Last edited:

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,242
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Buckhorn I read your post literally with my hands over my mouth that was stuck open in an "O" shape. Every word had me hanging, gasping, sighing, gasping, feeling pain, and hanging again. whew girl you rock!!!!

OK you caused the situation to start with, but forgetting that, your navigating through the situation totally outweighed that! :lol:

wish - I so hope your PALS responds well to the antibiotics and comes home asap. Having a PALS in hospital is not a break, is not easier, not on them and not on us!
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
727
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
City
Stuttgart
Yehaaaw! My PALS is cleared to go home on Monday. Thank you for wishing him out of there. We too have those nasty super bugs at our hospitals, maybe the reason why he got diagnosed later than he could have been. I thought that they'd find out what's wrong much quicker at a hospital, but didn't recommend it to him because it's a scary place and a resident neurologist should also just be able to do his job...

Yeah, so anyway. I hope his spirits are already up and that he'll be much better soon at home.
Tillie, in a way it's true, I thought I'd have more time off with him being taken care of. But I got a couple days to myself and yesterday I kicked myself out of my black cloud to go swimming and later when a concert with some friends. I knew that it'd be fun once I'd be there and it worked. And it got very funny and very late. :) 11:30 already? I better get up and drive to visit at the hospital.

Buckhorn, you are my personal rolemodel! Alas I don't wear flipflops or there'd be no toes left by now.

I wish you all a good to very good weekend!
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,591
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Buckhorn I think you and Becky need to sit down with a couple bottles of wine and a weeks of days to trade stories :). I know this whole thing was not funny, it was scary and painful, but you had me laughing while also waiting to read the conclusion hopeing all came out well in the end.

When we were moving DD into her first college apt, 4 or 5 years ago, she had on flip flops and was moving with someone else the dresser they gave her. It went up over her toe and literally bent the big nail back half way back the nail bed. Her brother had to hold her while I had to clip the nail as it was sticking straight up in the air. Scary and very painful for her. Brian also drove the WC over her foot one time when she was helping him.

You got this Buckhorn

Wish great news on DH getting out of the hospital Monday

Hugs,

Sue
 

KatieNBoyd

Distinguished member
Joined
Oct 17, 2015
Messages
147
Reason
Lost a loved one
Diagnosis
11/2015
Country
US
State
MT
City
Boyd
Howdee there,
Sounds like all of you are doing very good with all the challenges and such. I get an email reminding me that I am still signed on to this group. I think of all of you often keeping you in my heart and prayers.

Things around here in MT are cold. Storms the last couple of days. but Spring is just around the corner!

I have gotten myself in to Jon's shop and done a couple of projects. My biggest accomplishment of late, Pulled out all the sheet rock in our closet (14X7X2) because of continued moisture/mold in it (one of those projects that we always said we would get to). Found that the insulation was all wet (and frozen in a couple of areas) Had it spray foamed and then I put up new sheet rock (5 - 8X4pieces) taped, sanded and painted. Re hung the rods and shelves as well as put in a full length mirror.

Pretty proud of myself. I know that Jon was smiling as I didn't even break a corner of any of the sheet rock! He taught me so much!

I have found I need to find stuff to keep busy with. I am getting better at handling the quiet.

Hugs to you all!
Katie
 

Buckhorn

Senior member
Joined
Jan 3, 2016
Messages
725
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
PA
City
Small town
Katie, good to hear from you. I'm glad you are able to find ways to keep busy and hopefully keep the sadness and loneliness at arms length. Hang in there. Hugs!!
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,591
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Way to go Katie! In pre-ALS days we redid a good portion of our first home. I know what work you’ve done. Excellent job.

Hugs,

Sue
 
Top