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

[Statius@]

Checking in, also interested in your upcoming experience, Al. You and I were diagnosed about the same time. My NY daughter and family are coming for a short visit at the end of the week. Looking forward to it.

Ed

 

[KimT]

Al, I'm glad your Country accommodates ALS patients and look forward to hearing about the experience.

Have fun with your family, Ed.

 

[wmilo]

The first cycle of Radicava 0RS went well, with no side effects. It is less time-consuming and also more convenient to not have my port accessed for 10 days at a time.

I had cataract surgery a couple of years ago and have recently been experiencing blurry vision in one eye. My eye doctor told me that this is fairly common following cataract surgery and it is due you to some cloudiness on the back of the capsule which holds the lens, and that it can be corrected using an optical laser. Unfortunately, they can't see me for the procedure for three months. I guess I should be glad that it is available at all.

Al, like several others above I am interested to hear how you make out in the care home. You have my best wishes that it goes well.

We continue to have cooler than normal weather for this time of year. I am very happy to report that we have no flooding, wildfires, or sweltering temperatures.

Best regards to all,

 

[Firefighter58]

Hi folks, well the first four days of my new home sucked, isolated for four days for covid, but that is over now and I am free to roam around and I am totally enjoying meeting new people even though I can't speak, I use my iPad with a tts app that makes communication possible ,so far I am enjoying it

 

[Nikki J]

Sorry about the rocky start. I guess it is good they are cautious?? Happy it seems good now you are out and about. Thanks for checking in.

 

[KevinM]

It’s been a while since anyone posted here, so I thought I’d give it a go. Miss hearing from folks. Steve Walker, I hope you’re doing okay and are still planning a fall RV trip.

 

[wmilo]

It has been somewhat of a quiet spell. Maybe people busy with end-of-summer activity.

I am doing ok, although weaker and more short of breath. I find it a challenge (as probably most do) to find that balance between coming to terms with the knowledge of the 100% mortality rate while not feeling ready leave. I continue to see family and friends, which is a great blessing.

We're having a lovely end of summer, with highs in the mid-70s. There are still tomatoes on the vine.

Best to all.

 

[KevinM]

So good to hear from you Bill, though I know things are really starting to get tougher by the month.

The mental (and physical) challenge you describe is one of the most difficult aspects of MND and other terminal illnesses with no hope of recovery. Not only the basic survival instinct inherent in most all living creatures, but our desire to spend as much time as possible with loved ones.

Everyone is different, but I’m in the camp of “I’ll know when it’s time.” I think you will too. Until then, though, there is life to be lived and love to be shared.

 

[wmilo]

I understand that the mods are sensitive to allowing religious content in the"regular" fora, but maybe it will be ok to state that for me, I am trusting that God will know when it's time.

 

[bhg]

Al, good to hear things are working out.

We had a short heat wave here that left me weaker. We don’t have air conditioning. Several large trees shade our house which works great most days but not when it is over 100.

 

[Firefighter58]

Hi folks, well I have been in this nursing home for about 5 weeks now and I guess Its the spot I call home now. My wife comes in every other day and we spend the day together discussing our life in general or hanging pictures to make it more like home. The home is about 20 years old but well cared for and the staff is very good with on duty nurses 24 hours a day 7 days a week who are directed by an on site doctor , I think we made the right choice .

 

[Nikki J]

Good to hear from you Al. I am glad you find the care good and your wife is able to visit. Still I am sure a difficult adjustment. Wishing you the best

 

[wmilo]

Hi, Al. Very glad to hear that you are becoming comfortable with the new circumstances.

Wishing you the best.

 

[lisa g]

Glad to hear its been a positive experience Al. Anything that makes our life easier is a plus.

 

[Firefighter58]

The only problem so far seems to be the food, everything tastes the same. It's like staying in a nice hotel but having to go to a restaurant for a decent meal
Al