- Status
FrJn
Active member
- Joined
- Mar 12, 2015
- Messages
- 71
- Reason
- PALS
- Diagnosis
- 04/2016
- Country
- US
- State
- Somewhere
- City
- Small Town
Hi folks!! I do apologize for being a day late (and I actually was on the site yesterday) but that's rather typical for me... a day late and a buck and a half short...
Had clinic on Tuesday. All is well, no measurable progression. I am beginning to have some trouble turning onto my right side in bed, and of course, continue with the walking issues. Ah well, so it goes.
I do hear that Hershey's Chocolate (and other chocolatiers) are likely to petition the church to change the way that Ash Wednesday and Easter are calculated! Ash Wednesday falling on Valentine's Day is gonna hurt the chocolate companies bottom line dramatically (since many are known to give up chocolate for Lent) ... and having Easter fall on April Fool's Day??? Geeeeeeeeeeeeeeeeeeeeeesh!!! Oh, if only I were in charge of such things ...
John
Had clinic on Tuesday. All is well, no measurable progression. I am beginning to have some trouble turning onto my right side in bed, and of course, continue with the walking issues. Ah well, so it goes.
I do hear that Hershey's Chocolate (and other chocolatiers) are likely to petition the church to change the way that Ash Wednesday and Easter are calculated! Ash Wednesday falling on Valentine's Day is gonna hurt the chocolate companies bottom line dramatically (since many are known to give up chocolate for Lent) ... and having Easter fall on April Fool's Day??? Geeeeeeeeeeeeeeeeeeeeeesh!!! Oh, if only I were in charge of such things ...
John
Angiegal
Distinguished member
- Joined
- Feb 15, 2017
- Messages
- 309
- Reason
- PALS
- Diagnosis
- 09/2015
- Country
- CA
- State
- Ontario
- City
- Kitchener
Hi everyone
It's a little early, but I added two photos to my album "just stuff". If you'd like to take a look, you can access it from my profile page, I believe.
Angie
It's a little early, but I added two photos to my album "just stuff". If you'd like to take a look, you can access it from my profile page, I believe.
Angie
chally
Very helpful member
- Joined
- Apr 23, 2015
- Messages
- 1,265
- Reason
- PALS
- Diagnosis
- 02/2015
- Country
- US
- State
- wv.
- City
- renick
Haven’t done wensday in awhile.
Very hard dealing with no hands,legs, still eat and have a voice so that s good.
Breathing is not good,using trilogy daily and all night
Looking to see my eagles win the stupid bowl this Sunday.
Hope ya all a good day
Oh yeah calender folks Gleason informs me we have raised over $500 so far
Very hard dealing with no hands,legs, still eat and have a voice so that s good.
Breathing is not good,using trilogy daily and all night
Looking to see my eagles win the stupid bowl this Sunday.
Hope ya all a good day
Oh yeah calender folks Gleason informs me we have raised over $500 so far
- Joined
- Nov 18, 2014
- Messages
- 4,887
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
Here in chilly Central Florida. It looks like this Winter will be colder than usual. I miss swimming in the outdoor pool but they won't heat it if it isn't warmer outside. The inside pool is not so nice. It's too shallow and they only keep it at around 81. Hot tub and sauna I'm doing once or twice a week.
- Joined
- Jul 29, 2017
- Messages
- 3,933
- Reason
- PALS
- Diagnosis
- 07/2017
- Country
- US
- State
- OR
- City
- Southern Oregon
And our winter here out west is warmer and dryer than normal. I want snow!
The reality of ALS is hitting me, particularly the irreversibility and inevitable decline. My diagnosis was suspected last July, confirmed in early December. Friends and family tell me I have a great attitude about the whole thing, but maybe I’ve been in a degree of denial all along.
The reality of ALS is hitting me, particularly the irreversibility and inevitable decline. My diagnosis was suspected last July, confirmed in early December. Friends and family tell me I have a great attitude about the whole thing, but maybe I’ve been in a degree of denial all along.
swalker
Very helpful member
- Joined
- Dec 11, 2014
- Messages
- 1,579
- Reason
- DX MND
- Diagnosis
- 07/2014
- Country
- US
- State
- CO
- City
- Vail
I am doing well and continuing to work on my slide scanner project. It is keeping me busy and entertained.
We have had an abnormally dry and warm winter. Starting tomorrow we are supposed to have 4 to 5 days of snow. Everyone here is looking forward to it!
Steve
We have had an abnormally dry and warm winter. Starting tomorrow we are supposed to have 4 to 5 days of snow. Everyone here is looking forward to it!
Steve
swalker
Very helpful member
- Joined
- Dec 11, 2014
- Messages
- 1,579
- Reason
- DX MND
- Diagnosis
- 07/2014
- Country
- US
- State
- CO
- City
- Vail
This Saturday feels like a Wednesday, so here I go.
Last Wednesday we made the trek to Denver for my pulmonology appointment. The results are that my FVC has dropped again (now 20%). Since they started measuring it about 5 years ago it has always gone down, never stayed the same or improved. The doctor says we can call it a trend.
My CO2 is below normal and the doctor said it is not from metabolic causes. That is great! It means I exhale well, I guess. It seems I am alkalotic rather than acidotic.
My overnight oxygen saturation is down, and they want to consider adding supplemental oxygen to the mix overnight (appropriate because I live at high altitude).
I continue to do well, but tire easily. I have had great fun working on my slide scanning project. We have also finalized plans for a few camping trips later this year.
Steve
.Last Wednesday we made the trek to Denver for my pulmonology appointment. The results are that my FVC has dropped again (now 20%). Since they started measuring it about 5 years ago it has always gone down, never stayed the same or improved. The doctor says we can call it a trend
.My CO2 is below normal and the doctor said it is not from metabolic causes. That is great! It means I exhale well, I guess. It seems I am alkalotic rather than acidotic.
My overnight oxygen saturation is down, and they want to consider adding supplemental oxygen to the mix overnight (appropriate because I live at high altitude).
I continue to do well, but tire easily. I have had great fun working on my slide scanning project. We have also finalized plans for a few camping trips later this year.
Steve
- Joined
- Nov 18, 2014
- Messages
- 4,887
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
Steve,
You are always on the move and planning. I admire that in you and it inspires me to do the same.
Today the outdoor pool heat was turned on. The air was 78 and the water 81. I went in! They also turned up the heat in the indoor pool to 84. I wish they had done this earlier because I've been about 2 months without a pool. Now I'm back in business.
You are always on the move and planning. I admire that in you and it inspires me to do the same.
Today the outdoor pool heat was turned on. The air was 78 and the water 81. I went in! They also turned up the heat in the indoor pool to 84. I wish they had done this earlier because I've been about 2 months without a pool. Now I'm back in business.
- Status
