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

Doglady

Distinguished member
Joined
Aug 6, 2018
Messages
218
Reason
PALS
Diagnosis
04/2018
Country
US
State
MN
City
Minneapolis
mouz- getting out is good. Hope your test went well!

I met three old girl friends for lunch today in the old neighborhood. Very nice but also quite tiring. Resting all afternoon and tonight!
 

plcare

Member
Joined
Mar 5, 2019
Messages
20
Reason
PALS
Diagnosis
03/2019
Country
US
State
FL
City
lakeland
So, I have started a new chapter in my ALS journey this month. Had a power wheelchair delivered a few weeks ago, and, although I was initially resistant to the idea, it has greatly improved my quality of life by allowing me to get out of the house much more. In fact, I had family in town this weekend and we went to the Universal theme park in Orlando and I "rolled" around for a couple of hours and had dinner. I never would have been able to even attempt this w/o the PWC.
Also had a Trilogy ventilator and a cough assist set up this week. The cough assist has been very helpful in expanding my lungs. Along w/ ALS, I also have emphysema, pulmonary fibrosis, atelectasis and only half of my left lung, so anything that helps get more O2 into my lungs and removes CO2 is very helpful.
With all that being said, I still feel as though I am slow progressing and hope to stay at this plateau for a while.
 

Signe

Active member
Joined
Aug 17, 2017
Messages
88
Reason
PALS
Diagnosis
04/2019
Country
US
State
IA
City
Lansing
plcare glad your out and about more, that always helps. Since I'm bulbar onset I still move around pretty good though some people think I'm drunk a bit, with my speech and a bit of swaggering walk I do. Lol, I do like a margarita now and then and then when people see me they always think I had one too many.
Today though, I have a issue that's new to me. I couldn't sleep last night and did sit up in my recliner till I dozed off towards morning. I woke up and thought I must have slept wrong and my right arm and hand felt "asleep". I've been up moving around now for 5 hours and I still have a numb hand. Worse in my little finger and ring finger. I can move them but they feel dead. My hands are already quite atrophied and weak, but this is new. Any experience like this for anyone else? Any suggestions? It also feels like my arm is very heavy but the pins and needles I had earlier in my arm have stopped.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,553
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
That’s probably not from ALS, but you may have a pinched nerve in your neck or elbow. Since it has been going on as long as it has, I suggest calling the neurologist.
 

nona

Distinguished member
Joined
Oct 1, 2018
Messages
311
Reason
PALS
Diagnosis
02/2015
Country
US
State
NH
City
NEW LONDON
I woke up and thought I must have slept wrong and my right arm and hand felt "asleep". I've been up moving around now for 5 hours and I still have a numb hand. Worse in my little finger and ring finger. I can move them but they feel dead. My hands are already quite atrophied and weak, but this is new. Any experience like this for anyone else? Any suggestions? It also feels like my arm is very heavy but the pins and needles I had earlier in my arm have stopped.
.
I had the same thing, Signe, and the PT said it was nerve impingement and he worked it out after a few sessions. Do you have a PT affiliated with your clinic ?
 

plcare

Member
Joined
Mar 5, 2019
Messages
20
Reason
PALS
Diagnosis
03/2019
Country
US
State
FL
City
lakeland
Signe, I have some cervical spine issues that can cause numbness and tingling in my hands from time to time. I agree with the others that your PT should be able to address this issue.
 

Clamdigger

Active member
Joined
Jun 20, 2017
Messages
48
Reason
PALS
Diagnosis
05/2017
Country
US
State
MD
City
On my boat
Still here. Finally decided it was time to retire, 2 1/2 years after diagnosis, and I found out that I should have done the paperwork a year ago since it's going to take OPM that long to process everything. SS told me it would be 5 months minimum from the time I stop working before payments would start so I'm kind of stuck here for the time being.

I'm going to try to speed OPM up by demanding all kinds of adaptive technology that's not allowed in here, and when they deny it I'll go to OHESS and the ADA. Figure if I'm a big enough pain in the ass they'll want to get rid of me.
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,746
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
I went to war with my employer over my disability. They wanted me to work another semester and I really tried. It wasn't really the college but our new Chair of Business. She had a personal gripe with me because I used to have her job and faculty always came to me with their issues. I always referred them back to her, gladly. I could have worked another year or two under ADA because I was approved to teach 100% from home online but I thought it would compromise my quality of life and put too much stress on me. I started the semester and taught for three weeks. Then, after I made sure I had others who could take my classes over, I went out under family medical leave. Because I was never sick I had over six months of paid sick leave accumulated. I thought I'd take the FML, then decide if I wanted to come back in January. The FML would have taken me to the end of the semester, then I'd have three weeks paid time for Christmas break.

At that point, my brother came to Florida and got the flu. His wife stayed in NY so I had to take care of him (he's 20 years older). Then Fred, my current housemate) had a dangerous arrhythmia and had to be hospitalized. He had no living family so, less than a month after my diagnosis I became caregiver to both brother and Fred. Fred ended up with a pacemaker and severe depression. My brother took a month to recover. By the end I was worn out and just put in for LTD and SSDI. I was approved within two weeks for SSDI but the college LTD (UNUM) denied me. I appealed with letters from three doctors and was approved. Then I decided to get aggressive with the college. I went to HR and told them I wanted to stay on the payroll until my sick leave was over. We only paid $15 a month for great health insurance and that was why I wanted to stay on the payroll. I had letters from five administrators outlining all the books I published and awards I received. HR informed my supervisor that I was approved. Actually, the college insurance took me past my SSDI and Medicare time so it was an easy, though expensive, transition.

Sometimes you have to fight.
 

mytmouz

Active member
Joined
Aug 17, 2019
Messages
88
Reason
PALS
Diagnosis
07/2019
Country
US
State
MS
City
Pelahatchie
Posting from the hospital. I came in Sunday with a localized facial numbness and shortness of breath. They are trying to get insurance approval for some in patient therapy. My family caregivers and I need training with transfer equipment to see if I can stay home. Unfortunately, they all have health issues that make helping me difficult for them, and I refuse to let them hurt themselves dealing with me.
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
191
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
Didn't realize it has been almost a month since my last check-in.

Appointments with Pulmonary and Neuro at the first of the month went well. FVC dropped, but still at 98%. Neuro saw no decline since stopping Radicava. By the way, the bruising and lack of focus that I was experiencing during my last two or three infusions cycles have ceased. Since nothing else has changed, I am certain that both were part of an adverse reaction to the Radicava. Of course, the other plus is that I am no longer tied to the infusion cycle. 😁

The VA switched my PCP to a doctor who specializes in geriatrics. I was less than impressed with the change (okay, okay, it was more the label than the change)

Took a trip to Colorado Springs to visit family and be at my Granddaughter's baby shower. Yes, I will be a great-grandfather in October. We spent a couple of days in Denver on the way home.

Otherwise, we are ops normal in the Heartland.
 

beauty4everyone

Distinguished member
Joined
Jul 5, 2018
Messages
227
Reason
PALS
Diagnosis
04/2018
Country
US
State
GA
City
Someplace
347.jpg

Salutations, greetings and Hi 🌺 . Although I can’t see outside, I’m told it will be a warm, sunshiny day🌅.
I hope those having difficult challenges will be much improved and experience a calm, 🌈peaceful week. Wishing travelers safe and enjoyable adventures⛱ . May it be so 🍀 !

I’m still working on the printed cross stitch of “Rose Cottage”🌹. About ½ completed. Saw new kits I liked when looking online. Since my ability is much less than my desire:(, I know I’d not be able to finish it, so I resisted. Looking forward to having framed: three finished cross stitch, two crewel, possibly a needlepoint and other pieces I’ve stored away over the years . Might as well hang and enjoy the ones already completed and try painting 🖌instead of needlework . Abstract/Impressionistic art has its advantages ;) .

Bedroom and 2nd bath renovation ongoing since Feb. Heard nothing from them this week. Getting tired of waiting. Oh well, so it goes🏤 . Hopefully, maybe tomorrow❓. May blessings abound❤ . B 😎.
 

Signe

Active member
Joined
Aug 17, 2017
Messages
88
Reason
PALS
Diagnosis
04/2019
Country
US
State
IA
City
Lansing
Hello everyone , I'm just getting over a terrific choking episode. Yuck, now I won't give into my cravings for normal stuff again, I learned my lesson. Choked on a French fry, a soggy one at that. Still coughing it up a bit. And now I'm exhausted besides. Uff da. I've choked before but this time was seriously bad. I know I didn't aspirate cause well I just know, but uff da. Anyone else a choker here? I'm bulbar onset so I thought I know about choking but I guess I'm just learning apparently. I think I let myself get too tired and over did the day. Got hungry for something I could chew and well...
Now I'm going to stick to my soft blenderized, yogurt, pudding consistency diet....
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
121
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
Signe, that's awful hope all is well now. I was constantly choking on food but for some unknown reason after I started taking Riluzole that has improved. Even with that I stay away from chips they seemed to be the worst for getting stuck. I now have a terrible cough that has been persistent for about 2 weeks now. My husband is insisting that I call the doctor and get a chest X ray. Its alway something 😔
 

KevinM

Distinguished member
Joined
Mar 30, 2019
Messages
106
Reason
PALS
Diagnosis
06/2019
Country
US
State
FL
City
Tallahassee
Hi everyone. Checking in on this Wednesday the 4th of September. Still able to do everything, but stopped Riluzole this week because of fatigue. I’m feeling a bit better now that it’s out of my system.

I have been attached at the hip to this amazing forum since March, three months prior to my formal diagnosis, but I have a sense during that time that the participation among members has declined. I’m afraid it might be the normal, tragic cycle of forums such as this, as once enthusiastic posters have passed on or are now just trying to get through the day and don’t have the time or inclination. I’m sure there are many members who might still check in, but don’t have anything they feel is worth posting.

Please post anything if you’re still able! We newbies need you. I’m worried about a couple of members that I’ve grown fond of, but haven’t seen a post from in a while: Vincent, and notbrad. Love to hear from you, guys. Best, Kevin
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,553
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
I’m getting my new eyegaze device set up today. More to report later.

I should also add that we returned yesterday from a four day trip to the coast. Fun, yes, but exhausting. I’ve come to realize that “standard” ADA accommodations are no longer enough for me. I’m thinking about starting a thread “too disabled for ADA”. Most PALS probably reach a point where standard ADA just isn’t sufficient. The fun never stops!
 
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