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FrJn

Active member
Joined
Mar 12, 2015
Messages
69
Reason
PALS
Diagnosis
04/2016
Country
US
State
Somewhere
City
Small Town
Hey, all y'all... there are ever so many new faces in here, and I truly am saddened to be welcoming you, considering the price of admission to this exclusive club. It has been awhile since I've posted, but wanted to bring you all up-to-date on the goings on. Life has been good, but the life of a parish priest with ALS brings yet more daily challenges. However, I'm still fully mobile (however, more clutzy than ever and ambulating far more slowly than in the past). I still manage to do several liturgies each week and preach at least twice on Sundays, as well as carrying out the myriad of pastoral and administrative duties with which I'm charged.

In less than two weeks, I'll be headed to our state capitol for ALS Advocacy Days. Can ya believe that they figure I'll not be too self-conscious to make a presentation to one of our state Senators for his years of support of the cause? Geeeeeeeeesh, and with TV cameras promised to boot! I've done opening prayers for both our state House of Representatives and state Senate, but this trip will be entirely different than the ones I've made in the past. I do hope that my presence might encourage those legislators to help ever more so than they've done in the past.

I've also begun voice banking through Model Talker. Now, despite the fact that no one has commented on having difficulty understanding me at all, I have had to repeat several sentences of the voice banking due to pronunciation. Folks, if you still have the ability to speak clearly, please, please, please start voice banking NOW! It is impossible to start too early, and ever so easy to put it off for too long. Once others notice changes in your speech, it is possible that voice banking will not be an option. Wouldn't it truly be a blessing to be able to express your love for spouse and family in your own voice, rather than having them listen to a robotic voice expressing those same sentiments?

Planning for transition to a new clergy person is going well, although it's not without its challenges. When that crystal ball, marshmallow peep, block of cheese, or whatever, hits the bottom of the tower and 2018 is welcomed in, I'll be officially retired. There are certainly many parishes that need supply clergy for Sundays and Holy Days, but I'll no longer be tied to the 60 to 70 hour weeks to which I've been accustomed.

We've also just finished partially remodeling our two upstairs bathrooms (haven't done anything recently in the basement bathroom). I can tell you that it truly is a joy not needing to award a contract to the "lowest responsible" bidder. We paid a bit more than needed, but the work was actually completed sooner than anticipated and we'll be getting a rebate from the contractor because the actual cost was lower than the bid. I wonder how many of my previous clients may well have benefited from selecting a somewhat higher bid but avoiding the nightmares frequently experienced when forced to choose the lowest bidder. It's not that I strenuously object to being "politically" correct but, sometimes, it does rankle me just a bit. Do you realize that toilets are now advertised as "Comfort Height" rather than ADA-compliant since the able-bodied object to purchasing "handicapped" toilets? And that bidet seat??? Well, as a hairy-legged old guy, I never thought I'd enjoy such a thing, but it truly is wonderful even though I retain fairly good use of my legs and arms. My core muscles are about shot, but I'll get through that too.

Of course with retirement staring me in the face, I've also pondered long and hard what to do to fill my days. My dear wife is not fond of travelling, so I know that many of the trips I yearn for will never come to fruition. Well, the ALSA Social Worker who moderates our support sessions has declared that my writing and verbal skills are at least passable, so it appears that I may be doing some writing and Advocacy for the Chapter. Now I don't come to those tasks with the followings enjoyed by many of the professional athletes who bring mega-bucks in support to our community, but I truly can do my best to do what little I might be able to accomplish. Sooooooooooo, who knows? Maybe one day I'll be able to enjoy some face-to-face time with at least a few members of this community.

Have a great one, all y'all, and know that prayers regularly surround each of you!

John
 

edschia

Active member
Joined
Mar 1, 2016
Messages
59
Reason
PALS
Diagnosis
01/2016
Country
US
State
PA
City
Wilkes Barre
Thank you so much for the good words and positive attitude. Hopefully what you have to speak won't fall on "deaf ears". God Bless!
 
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