How do YOU keep your mind fresh once immobile?

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MarineChief

New member
Joined
Mar 8, 2022
Messages
5
Reason
PALS
Diagnosis
12/2021
Country
US
State
MD
City
Parkville
1st a little about me... As a former Marine Engineer I operated, maintained, and repaired deep sea ship equipment for a 31 year career. Then retired and was (thankfully) able to tour some of the US in an RV for the next 8 years. We them were caregivers for my wife's Mom for the next 9 years during which I took a mechanical and supervisors job for nearing 6 years of that time. What stopped me working was the weakness noted in April 2021, the twitched in July, and then official diagnosis at end of 2021 (1st available nuerologist appt). Second opinion obtained end of Feb this year (still awaiting test results for final confirmation, then hopefully start with a clinic and home assessments, etc.)
My point is that since I entered high school I have always been one to work with my hands, performing mechanical and home repairs / rebuilds for myself or friends. I'm not a CEO, a corporate board member, a professional athlete, I do not have the brain power of Hawkins or anything similar to the likes of any of these people. So, my question is, once you are confined to a wheelchair and have little to no arm mobility, what are the former "everyday" workers doing to keep your minds active and feel like you are still contributing to your family, community, or society in general ?? After 31 yrs at sea I must admit that I (unfortunately) have minimal social skills and my social presence is nearly non existent. But every piece of advice helps and provides insight and guidance.
Thanks to ALL in advance.
-D-
 
Hi Chief, so sorry we have to meet like this, but so be it. I like you spent my working life with hands on work. 40 years with a big city fire department and at the same time 45 years in the heavy towing and recovery business. I am now confined to a wheelchair and have limited use of my right hand ( Iam right handEd ) I now spent much of my time online, writing stories of my exploits, watching hockey or baseball or spending time up ar our cottage with my grown grandkids when the are not working. My wife and I along with my son on weekends built our 2600 sq. ft. cottage after I retired but before ALS. Then along came ALS and that is a great pain in the ass, but nothing more, I won't let it be more and neither will my wife. We still try for a pretty normal life. This weekend we will have the whole family over for a thanksgiving day and dinner.
By the way my father in law was Chief Engineer for Toronto Harbour Police for 42 years, the last 15 as Chief Engineer
 
Fighter... Thanks for your reply !! From what you say you are living up to your online name. I like the info you gave, guess I can do some internal searching to see if any stories are hidden away in my head. I wasn't Colon Glencannon but might be able to spin a tale with practice 🤔. For sure the building days are over and presently adjusting to "place that part there, use this bolt" etc. Future will (too soon) bring much less mobility and more dependence on my better half. Just don't like knowing how much she will be giving up of her time to give me service needs. I know she'll do it without complaint. Except for the last year she was primary caregiver for her Mom since 2012, until it got to be physically too much (she had upper back surgery 2018 and still has pain and issues). We'll survive however, there is a lot of support and this forum is also helping.
Again Thanks
-D-
 
I feel for you and your loss of abilities. I was a machinist for 28 years. Built machines, medical devices, fixed cars, motorcycles and did cnc programming. I had a dream job earning a decent living when ALS brought things to an abrupt end.
The only thing I can move is my head. I've had to turn my skills to new challenges. Home automation. Modified my recliner for computer control. For an additional challenge everything I want to do must be thought of with my wife's abilities in mind. No complex fabrication. I've also spent much time learning how to set my ventilator and cough assist, I am more comfortable doing it myself than waiting for the RT. I don't enjoy reading respiratory equipment manuals, but it is my new job. It is much better to learn than to depend on others. It takes a lot of patience because things I used to do easily are not easy for someone else without the experience. But with the drive to overcome my ever changing conditions, I have had plenty to think about.
 
Hello guys, I don't know if it is available in the US but here in Canada the government supplies me with a very competent PSW every morning to get me up and dressed for the day and my teeth brushed and hair combed. Once a week a care giver is also supplied for the day to let my wife get out and do what ever she likes. I have become close to this care giver to the point she has become my best friend, we generally laugh all day. My wife has also become close with the PSW's that come every morning, it all helps for a happy life.
Al
 
Not sure about the rest of the US, but in California I don't qualify for any assistance. After working and paying taxes I achieved a nice lower middle class living. The result being my HUGE social security disability payment puts me above the income limits. Any caregiver must be payed out of pocket. The local ALS association graciously gave me a $500 grant for caregiver services. At $25/hr it was used up quickly but definitely appreciated.
 
No, US payors typically do not pay for "custodial care," where a PSW is doing non-medical things. The exception is Medicaid, for those who are eligible given their State's criteria.

Most plans do, however, cover "home health," which allows for PT and OT services at home, to a limited extent, and skilled nursing when it is needed for something like IV antibiotics for an infection, or wound care.
 
Hello Fighter and Chief and others in the same boat.

With my retirement, I decided to pick up a couple new woodworking and wood carving hobbies. Bought lots of great equipment to facilitate that set of hobbies. I was beginning to see some strength loss and then some "sloppiness" in the control of my carving tools.
With my diagnosis of ALS in Dec 2021, it confirmed for me that I had to put aside that set of interests; sell the equipment is my current activity.
Yes, my challenge and prayer is that I can find some new means of involvement and "activity". Once I get a PWC, I will be navigating some of the trails in my neighbor.
Yes, I would like to hear how others are facing the changes as well. Thanks for asking the question.
 
I don’t have a lot to add I missthe physical activity very much. I do think the more interests you can cultivate that are non ALS related the better. If you can partner with a friend on a project of mutual interest maybe that could work. You design plan and research they do hands on? I wouldn’t put that on your CALS though. However planning something nice for your CALS would be a great project- also taking responsibility for household bills and ordering if you can and aren’t already might help you both
 
There's definitely no excuse for pals not handle as much of the bills, ordering and keep track of the schedule as possible. Unless mentally impaired I guess. Head tracking, eye gaze, whatever. It's a job we can certainly do.
 
Sorry, wasn't able to respond until my countdown expired today.
Great replies from all of you. Thanks Firefighter, Jimi, Nikki, & Al - y'all have great ideas to perdue and things that will be considered. I'm in the US so I doubt a public service is offered hear. I am also (still) waiting on doctor referral for clinic, PT, rt, ot, and other alphabets. I haven't a clue how long that takes though. My original diagnosis was Dec '21 with 2nd neurologist Feb 28th. Many tests done but little followup, still waiting on explanations etc. Gotta keep hope though.
 
Ok guys I'm right handed but my right hand is useless as far as typing goes, but I will replicate one of the stories I have written on Facebook If you folks are interested. What I mean is I will start the ball rolling but I expect you guys to follow, it will keep the mind and body working, are you guys interested?
 
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Fwiw: diagnosed Nov 21, was FRS 38 now 34 and continue to decline about a pt/month. The computer is my next best friend. Luckily, it’s a hobby and my career. With built in voice recognition windows 11 can definitely help. you can write, explore, automate the house, play games…. Keep the mind fresh
 
Thanks for the suggestions. I can see taking time to actually like the computer coming later. Presently I still have too much dislike due to multiple "not responding" and waiting long times for startups and programs opening (yesterday to over 20 min to open one excel file and two off in acrobat). Never got to the banking I orig opened for. As this desease progresses I am sure an updated and easily used computer will in order. Right now my biggest frustration is probably waiting to get doctor authorization for clinical work and advisement from them so that my home needs can be evaluated and addressed.
 
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