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

good afternoon, cool and overcast in NH today. This morning my cat was outside, as he usually is for most of the day. When my caregiver and I came out of my bedroom after my shower, there he was, sleeping on the armchair. We couldn't figure out how he got in. Just found out that he had run across the newly poured concrete for my neighbor's patio, and she caught him, washed his feet, and stuck him in my front door. Thank goodness for a small town and good neighbors!
 
I think the pattern of cat paws on concrete would be purrrrrfect!
 
I've not been reading posts for a couple of weeks, so am catching up. We saw a tornado here from the road but none near us have done major damage. Way too much rain though. We're considering getting a place in Tucson for the winter months (where my daughter lives) but are unsure if the logistics will be worth the effort. Anyone have experience with changing residences like that? Last winter was very hard on my wife who has inherited snow clearing duties. Last night's support group featured someone who promotes and sells essential oils. As a skeptic, I can't decide if it's new age claptrap or potentially beneficial, if only for mood enhancement.

Ed
 
Just checking in, not really much to report other than I now weigh what I weighed in high school. 5 years ago that would have been exciting, now not so much.

Eating has become very difficult. Chewing and swallowing are fine, getting the food into my mouth is exhausting, but I'm sure it's pretty entertaining to watch.
 
My weight is starting to drop. I have the opposite problem from you, Clamdigger. I have no problem getting the food into my mouth, but getting it to go down properly from there is a piece of work. So... feeding tube scheduled for July 1.

I’m still trying to swim, but I suspect I won’t have the strength to continue it after the G tube surgery and subsequent 6 week waiting period before I could resume swimming.

Also, I’m pretty much done driving. But a friend picked me up in my van yesterday and took me to a beautiful park where we watched ducks swimming.

ALS — the gift that keeps on giving.

Happy Wednesday everyone.
 
I am sorry clamdigger and Karen. Karen good luck with the tube

We finally have nice weather but the price of th very late/ non existent spring is June allergies! Happy I have flonase.

Organizing photos for an upcoming family reunion which is both fun and sad. I have a fair number where everyone died from c9. If I ever make it to advocacy day I am going to make a collage of some of them

However the sun is out and the birds are singing!
 
Raining in OH, again! Progressing loss of clinical strength in both hands. Still on my 3rd round of Radicava. I am still able to work, until the company's doctor runs me off!

Still tying to be positive! Have a good humpday all!
 
Greetings Clamdigger, Nikki, Karen, Chucdobro and everyone else!!!

Today in my area of Ohio the rain has just stopped. We only get about 2 dry days a week lately. And it is Spring temps still-60s-70s. Waiting for summer!

Retired on Friday. My husband had a party here at the house for me. A great event! 😀

Still waiting on the bank to finalize the new condo loan with a bridge loan for our house that hasn't yet sold. My retirement vs working income has held things up.

Hands can't do much including eating easily and getting dressed. Need more help each week with independent care. Can barely shave my legs ...😩

Karen, I think I'm done driving too. I struggle with lifting my leg. Need my arm to do it. Not a good idea to drive like that. I was only driving to school which was just 5 minutes away. Need someone for every appointment, event, or just leaving the house.

Cathy
 
Cathy,
Welcome to the world of forced retirement! Glad you had a fun party.

Florida has experienced a drought. I don't think there was a cloud in the sky all through May (at least here on the East coast) but we've had a couple of seasonal afternoon showers this month.

My brother (who has both Lupus and dementia) and his wife are going to make Florida their permanent home. Their older daughter bought them a condo 10 years ago right next to my old place. They've spent the Winters down here ever since. I'm surprised that they want to stay in Florida since all their family are in the Buffalo area or upstate NY. My SIL is in NY now trying to sell the house to a relative and ship some things down here. My brother always wanted to stay in Florida because their condo is larger than their home and it is all on one floor with 3 bedrooms. I keep asking my SIL and nieces to get him to a doctor who treats dementia but they don't seem to listen. The daughter is a PT and knows there are some drugs that can help. He never has slept over 4-5 hours a night and he has been depressed most of his life but denies it. What the nieces don't know is that I've done many things, both physically and financially, for them for the past ten years. I can no longer do either.

Karen, I'm sending you good vibes for a speedy recovery.
 
Karen, I’ve had my PEG for over a year now. It really makes life easier mentally so I don’t need to worry about choking, etc. My weight is maintained as well. It’s reslly too bad that this didn’t happen early spring so you could enjoy the pool!
Cathy, shaving my legs especially since summer is here and shorts are necessary, is a real tough thing to do. I thought just last week that I wish we lived in some European countries where shaving is not so important!

Our youngest granddaughter graduated high school and we had a lovely party for she and her cousin on Sunday. She was named to an All Star Softball team that plays next Saturday. Looking forward to that!
 
I don’t bother shaving my legs. Fortunately they’re not particularly hairy. If they were, I might feel differently. Most of the time I wear long pants anyway (lightweight and sun protective). But really, who cares? You have ALS. People need to cut you some slack and not judge.
 
I got myself some snazzy legwarmers on Amazon that do double duty as leg hair covers. Happy Wednesday all. Storm is about to roll in here in NH.
 
I still shave my lower legs. I think the hair on my upper legs has stopped growing as has the hair under my arms. I wear shorts and I don't worry about the look but I can feel it rubbing against the other leg and that irritates me.

Speaking of hair, I took the shears to it again last night. Since having short hair, I would need to get it cut every two weeks it grows so fast. First, it's too inconvenient and second, it costs too much. It only takes her 10 minutes with a razor and she charges $30.
 
Not shaved my legs in ages. Here they do waxing in every beauty parlor. They even come home for every beauty care. Lately i also have a new, very good massage woman. All those services are extremely cheap. We have a day- and a night nurse and someone who comes since 20 years for cleaning and laundry, a car wash boy, a regular gardener, and they are all very caring, warm people. I have no insurance, so could not live in the 'West' anymore and do not miss it. Life is different here but I fear that the new fast growing 'development' will also destroy precious qualities like natural caring, friendliness, open hearts, helpfulness and generally positive attitude regardless of possessions.

Getting a bit weaker, need Bi-Pap more often and doze off a lot in the day. But today I was again at the pool.

Wishing you all a positive week and all the love you can get and give.
 
I'm finishing off screening t shirts for the Simcoe County Walk to End ALS on Saturday. We finally have weather that resembles June. It has been a cold damp spring with over night temperatures hovering around freezing as recently as Monday morning, Nice to see the sun for a change.
Vincent
 
Back
Top