PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday]

wmilo

Active member
Joined
Feb 14, 2018
Messages
70
Reason
PALS
Diagnosis
10/2017
Country
US
State
PA
City
Zelienople
Ed - sorry to hear of your lung problems and fall. Hope you regain function.

I'm actually feeling better than I have for the last week - I had diverticulitis. :sick::poop:😟

So, feeling better after anbitiotics and regulated diet, but also noticeably weaker in arms and legs.

Beautiful day here in W Pa. We don't get too many, but they can be really crackerjack days when they're here!

Regards,
Bill
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,679
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Ed and Bill, wishing you both happy healing.

Relatively rapid progression for me this past year. Legs, core, and speech all gone. Now losing arms rapidly. BiPAP and I are best friends. What’s left?

Happy Wednesday everyone.
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
145
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Missed checking in yesterday, it's been a hectic week. I'm on day 11 of my first round of Radicava infusions. So far so good no side effects. Like I reported before I seem to have more energy after the infusion and my walking is good for a couple of hours after. I still haven't heard back from my neuro about putting in a port. I have an appointment with my PCP on the 30th I'll ask him to write the order if I still haven't heard back from neuro.

The heat here has been sweltering and I miss being able to use the pool because of the pic line. I have cheated and wrapped my arm in plastic and keep it out of the pool. It's just not the same. Last night my 2 grandsons came to swim, I had to sit on the edge and just watch. The 2 year old swims like a fish already.

I took everyone's comments on finding a Clinic to get established with. In the end I decided on University of Miami Kessenich ALS Family Clinic. I contacted Dr Benetars office. They registered me and wanted me to send doctors notes and test results before he'll see me. I keep a binder with all that information. So I copied everything and put a packet together that I'll mail to him today. I'm sure he'll want to do his own EMG (oh joy) so I'm going to cancel my upcoming one next month with my neuro since already I'm on my 5th EMG.

That's it for now time to get ready for infusion.
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
194
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
Hi Lisa,

When I had my PICC line, I found the best way to protect it was to use Cling Wrap to keep the line dry. Since it is self sticky, it is really easy to use as a wrap.
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
145
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Hi Dave,
I did use cling wrap for bathing and to stand in the pool. I want to have the port put in ASAP.
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
145
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Wednesday already? 🤗 Still stifling hot here. I finished my first cycle of Radicava on Sunday, so I'm enjoying my downtime and don't go outside if I don't have to. All went well no side effects. I called the surgeon to try and schedule my port placement. I'm afraid if I don't jump on it now with the Corona cases climbing in Florida that they'll stop elective surgeries again. Surgeon was very accommodating. We're going to do a Telehealth visit on Tuesday to go over the procedure then I'll go in on the 10th for procedure. Works out perfectly since I start my next cycle on the 13th.

I also contacted the University of Miami ALS Clinic and was able to schedule an appointment with Dr. Benetar for the end of the month. Scheduled for an in person appointment for evaluation but that's subject to change with Covid.

Hope everyone enjoys the 4th.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,791
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Lisa, It sounds like you are going to have a very busy month.

We are flooded with people from South Florida because our County didn't close the beaches AND NASCAR is having a race on July 4th. I won't leave the grounds of this condo until Monday. It rained this afternoon after a long dry spell.

Every time I leave the condo I've been smelling smoke. Smoking is not allowed in the common areas but some people smoke on their balconies. My friend and her husband just bought a unit exactly like mine and sold their smaller unit. They are right above me. He had a triple bypass four months ago and gave up smoking. Fred saw him smoking on the balcony the day they moved in. I feel so bad for my friend because he refuses to take care of himself and she does everything for him. He's only 69 and refuses even short walks.....but he was in the bar the day they opened back up and, I think, that's what got him smoking again.
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
145
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Kim,
Hopefully your beaches will be checking ID's to insure locals only will be at the beaches. What makes no sense to me is that they closed the beaches and bars but allowing you to order liquor for takeout 🤔 sounds like they're promoting drinking and driving if nothing else. We'll be staying put at home. poolside.
 

Fusia

Forum Supporter
Member
Joined
Oct 26, 2019
Messages
20
Reason
PALS
Diagnosis
08/2019
Country
US
State
MT
City
Big sky country
This is my first post to the weekly roll call, even though I keep up with threads daily…

The weather in Bozeman Montana has been a little up-and-down lately, going from beautiful and sunny to cold and rainy on a day to day basis. Bathroom remodel in my condo started yesterday, should be done in about four weeks. I got fitted for a PWC several weeks ago, and I'm talking to team Gleason next week about a grant for the seat elevator. Heading to Billings tomorrow for ALS clinic. I'm getting more and more proficient with the voice control function on iPhone and Mac – that's good news since both hands are getting less and less useful each week.
 

Tkthiede

Active member
Joined
Feb 25, 2019
Messages
53
Reason
PALS
Diagnosis
01/2019
Country
US
State
WY
City
Cheyenne
Just checking in. Nothing exciting happening here and I’m happy about that! On my off weeks from Radicava infusion so I have more time at home. Wish I could get up and get to work sorting and cleaning. I don’t have any umph to even try to get things done. But I do enjoy going out on the porch in the mornings and enjoying the birds and the quietness of the neighborhood.
Tammy
 

EricInLA

Forum Supporter
Active member
Joined
Oct 20, 2019
Messages
53
Reason
PALS
Diagnosis
01/2020
Country
US
State
CA
City
Los Angeles
Just returned from a week's vacation in Lake Tahoe with the family. It was beautiful up there. It felt a little devious leaving home for a week during Covid, but we took precautions, stayed in a private condo, wore masks, etc.. I'm also finding it hard to stay home, knowing this may well be my last summer with full function, as I feel progression in arms and legs. So it's a bit of a dilemma, knowing we're "safer at home". I played disc golf with my kids yesterday. I was happy I could still throw the discs, but today I'm paying for it with arm and shoulder pain. Same dilemma - I know it's not smart, but I want to do what I can do, while I can do it.

Lately I think I'm noticing head tilt and, especially later in the day when I'm tired, my head resting on my perched arm/hand. It freaks me out each time, as I'm constantly wondering if this indicates neck weakness, or if I've always done this. Mental battle!

Happy 4th to all. Fireworks cancelled here :( I guess we'll BBQ and go in and watch a replay of the hot dog eating contest. It's pretty revolting, but hey, we're good Americans!
 

Dee Dee 0617

Distinguished member
Joined
Nov 27, 2019
Messages
126
Reason
PALS
Diagnosis
11/2016
Country
US
State
MI
City
Escanaba
Happy Wednesday. Thanks for all of your great advice. I was in Ann Arbor last week to talk about a feeding tube and all the big scary words were used. I asked to meet the anesthesiologist and after we had our what felt like parlay, I will be having the procedure July 30th with area only anesthesia and he granted permission for me to watch on the screen. I have gained 11 pounds, and believe me, my Dr is the only one of us who seems to be happy about it. On the ride down things became a little dicey. My ventilator started to beep, we pulled off the highway, and called 911 (side note ;my caregiver ah yep not good in a crisis ) I saw the 1st- responder, and gone. Next time I was aware of anything was the Emt taking wires off my body. Got a new adapter for the cigarette lighter and went on to the hospital. I should probably do some thinking or pondering, about it but why. So Dr checks me out and I am a dying healthy horse. thanks again for giving me the support to advocate for myself.
 

swalker

Very helpful member
Joined
Dec 11, 2014
Messages
1,188
Reason
DX MND
Diagnosis
07/2014
Country
US
State
CO
City
Vail
I continue to get along, but am really worn out from all the stuff we have had to take care of.

We got our travel trailer sold to a wonderful couple.

We have replaced most of the items that were stolen from our motorhome, but have not yet addressed any of the damage that was done during the breakin.

We went on a two day trip in the motorhome 10 miles away from where the motorhome is stored, mostly to assess its condition. That turned into a wild adventure. We had it dewinterized (fresh water lines cleared of the potable antifreeze used to keep lines from freezing over winter). The RV shop kind of messed that up and it took a bit of thought to figure out how to restore most things. There are still two or three issues we need to deal with from that adventure.

We finished the process of buying our wheelchair van back from insurance (it was stolen, recovered, and declared a total loss). That only took 7 months to get resolved. There was a lot of uncertainty involved in the process, as the state dramatically changed the rules for doing so recently.

The Permobil F5 wheelchair that was stolen with the van (and recovered) is still not repaired. Today insurance indicated they may declare the wheelchair a total loss and replace it. That would be wonderful, but will probably result in months of delay as we procure a new wheelchair and get it set up for me. It has taken 7 months to get to this point since the theft.

The Permobil C500 wheelchair that was damaged when we flew in January and February is also not yet finished. Everything is done except the motors/gearboxes/brakes. We are still working on getting that issue resolved.

In the meantime, I have been on a few wheelchair rides (in backup backup wheelchairs) and have enjoyed the spectacular late spring and early summer weather we have had. Today was just a fantastic day, but I was not able to get out. Hopefully I will be able to go out for a ride tomorrow.

Steve
 
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