Done with work

[nishant]

I felt like sharing this with you all.

Yesterday (7/27/09) was my last working day. Because of weak arms it was getting very difficult for me to continue working. It's a strange feeling, after so many years of always having something to do, now I don't have anything to do. How do you spend your time during the day?

[GlenBrittle]

Well, that is an excuse to have a party.

I have yet to stop working. I am able to work from home also. IT Geek.

Have any hobbies ? Are you like me where most of your hobbies were physical ?

I think its going to be a tough style of life change for me when it happens.

Let us know whats going on. Hope you find something to fill your time with happiness .

OH , and for that party , make sure you share the pictures with us ;)

Glen

[KeeKer]

Hi, Here's a page my brother used. Only one click to get somewhere. He had a list of people and he would send them interesting things.Made our day brighter and kept us all in touch without him having to do lots of typing.
http://www.allmyfaves.com that helps.
Colleen

[joelc]

The link does not work.

[GlenBrittle]

Joel , can you mod the link - take out the ".Hope" - it works after that

Glen

[BethU]

Nishant ... I don't have anything to do. How do you spend your time during the day?

Retirement is a huge adjustment, even if you have lots of "hobbies." When I retired, I had been doing the same kind of work as a volunteer for a non-profit as I had been doing for pay, so I was able to expand the volunteer work. It was very gratifying, and I had a lot more freedom to run things as I would have liked them to be run at work. (Bosses just kept getting in the way of my creativity on the job!)

Give yourself some time to unwind mentally from the work structure. Pretend this is a vacation for now. (It is, actually) The big things you'll miss, besides the structure, are all the interactions with people and the ego gratification of doing good work and being recognized (and paid) for it.

When you start getting really bored with your vacation, you can probably find some projects to help out on that will be much less physically demanding than a job, but have some of the same benefits, like interacting with people and doing interesting things that challenge your brain and utilize your expertise.

Take care.

[thelma313]

Nishant, you have a great blog and you are very good at expressing yourself. Perhaps you can write a book? Or begin the process by joining a writer's workshop?

But first start by spoiling yourself and catching up on your reading or just sleeping in and spend this week planning that party that Glen suggested you have. It is a great idea.

Take good care of yourself and keep us all posted on how you're doing.

[trfogey]

Hi, Nishant.

I see from your blog that you were a software developer prior to your retirement. How would you like to keep your skills in the game?

There is a small group of us PALS geeks that are discussing and working on AAC projects over in the forums at alsmatters.org (http://www.alsmatters.org/). We could surely use your help and advice -- and whatever code you're still able to produce. We might even be able to point you to resources for computer accessibility that you haven't found yet, or maybe you could do the same for us.

We're a new group, just getting started, so anything you'd like to contribute is welcomed. ZenArcher is the guy that run alsmatters.org and is working on his own AAC software. I'm working on putting together a custom Linux LiveCD with preinstalled speech synthesis software and high quality voices. Come over and throw in your two cents worth on some of our topics in the AAC forums -- we'd love to hear from you.

Allen

P.S. GlenBrittle, haven't seen you over there for a while. We're beginning to get some other folks interested, so there's more than Jeff and me to talk to now.

[dldred]

I think the party idea is a great one, just make sure you invite all of us. I think Beths idea of volunteering is a good one. Maybe you could become involved in Glens production of Robin Hood. It would take a lot of work just to keep the cast in line, they seem to be a rowdy bunch. Anyway back to being serious, the writing idea is also a good one, maybe you could get a hold of your local newspapers and see if they could offer you anything. I will keep thinking about it and let you know if I come up with anything.

Dana

[DgtofTNfan]

Nishant - checked out your blog. I like that you are anticipating what you might need and researching hardware and software options. I would be very happy to hear about what you are learning if you chose to expand on that.

Give it some time - you'll think of something. I would probably go with Thelma's "spoil yourself" idea and start some bad habits!!!

[GlenBrittle]

Hi, Nishant.

I see from your blog that you were a software developer prior to your retirement. How would you like to keep your skills in the game?

There is a small group of us PALS geeks that are discussing and working on AAC projects. We could surely use your help and advice -- and whatever code you're still able to produce. We might even be able to point you to resources for computer accessibility that you haven't found yet, or maybe you could do the same for us.

We're a new group, just getting started, so anything you'd like to contribute is welcomed. ZenArcher is the guy that run alsmatters.org and is working on his own AAC software. I'm working on putting together a custom Linux LiveCD with preinstalled speech synthesis software and high quality voices. Come over and throw in your two cents worth on some of our topics in the AAC forums -- we'd love to hear from you.

Allen

P.S. GlenBrittle, haven't seen you over there for a while. We're beginning to get some other folks interested, so there's more than Jeff and me to talk to now.

Hey Allen, I will be there eventually. Between home renovations , work , training someone else to do what I do , support calls , and relaxing by playing class clown , what little time I have left is devoted to Wanda.

Thanks for the call-back .

Glen

[trfogey]

Hey Allen, I will be there eventually. Between home renovations , work , training someone else to do what I do , support calls , and relaxing by playing class clown , what little time I have left is devoted to Wanda.

Thanks for the call-back .

Glen

We'll take what you can give us, Glen. Besides, your work here as class clown is one of the high points of my day, most days. I wouldn't want to interfere with that. :lol:

My invitation is open to any other IT or technical geeks lurking around here. The only way it seems that we'll get better or cheaper AAC equipment and software is going to be by designing and making it ourselves.

[Senegal]

Hello,

I'm also a new member;noted ALS-like symptoms in Dec.2008, official diagnosis March 2009, had a very satisfying, but extremely stressful job along with the wonderful, multiple demands of supporting a recent high school graduate, had to stop work in late April.

It was horrible leading up to the decision to resign/retire (had been working from age 14 to now age 56). I'm just at the point of accepting that I needed to stop... my decline seems still quite rapid, but perhaps it's also my panic...had to stop driving recently... ALS affects primarily my hands, arms and trunk...started Bi-Pap last week, cough assist today...

To the point of your question... I was fairly physically active, walking, jogging, hiking, tent camping, cross country skiing. However, I'm also an avid reader, enjoy movies and in my opinion the best of TV; news, Jeopardy, "House", old re-runs Welby, Quincy...some comedy shows...

I have many friends and colleagues who want to visit, take me out etc., haven't opened myself up to that very much, but I hope to get better especially when my one and only child goes off to college. My husband is my loving caretaker...I am blessed in many ways.

I hope at some point to do some volunteer work with a local literacy program.

I will keep you in my thoughts as you face this challenge.

Senegal

[GlenBrittle]

Hey Senegal,

If you don't open up to your friends , they will assume you don't want to see them. Don't let that happen. Friendship can turn a mediocre day into a positive day.

Sorry for your rapid decline. Stay positive , keep the wolves at bay.

Glen

[Kevinski]

I have not worked in two years was a probation officer with young offenders with the government,i hung in for about a year and one day i walked into my boss and said i was done,it just became to difficult ,i have Bulbar onset als and at that time my speech was bad but still somewhat understandable ,but communication with clients was 90% of the job.I still miss the job ans getting a ull paycheck ,but I have a pretty good disabilty package .I keep busy as i am stil mobile ,arms and hands are starting to go.So I am not bored ,but would have liked to retire on my own terms ,not because i had too due to this darn disease.Anyways good luck and hang in there and stay positive my friend...Kevin from Calgary

[BarryG]

Kevin, I too am bulbar and cannot speak so that anyone can understand me anymore. I stopped working in June because it was too hard to do my job which involved a lot of driving and walking in the bush and mountains and I couldn't safely communicate with coworkers. We are required to talk on an industrial radio network (with hundreds of people) and because no one could understand me I was unable to tell anyone where I was, where I was going or call for help. My arms and legs are starting to go, almost tripped over my own toes this morning feeding the dog, so I decided that it was time to retire.

I am now filling my time on the forum, reading and just generally being lazy. Just like the summer holiday that I was always too busy to take. I am still able to do some housework so I don't feel totally useless. Like others have said volunteering is good, visiting with friends is also good but I find that for me it is REALLY a lot of work socializing when you can't talk or eat.

Nishant, you might want to check out Joel's "what do you for enjoyment?" thread for more ideas on how others here fill their days.

[mare]

Barry- maybe time to look into getting AFO's??? They can really help prevent the "tripping over the toes" thing!!!

As far as "retirement"- my husband is struggling a bit with this also. He is a great reader
and has a pile of books on the nightstand at all times. It is the physical activity he misses- biking, the gym, even our walks. He still swims some, although we are seeing the end of that coming in the not too far off future.

It is not so much about hobbies & filling his time; it is more about feeling productive.Sigh!

[BarryG]

Mare, I am glad that you mentioned AFOs cause I have talked with others here on the forum about them but non of my doctors, the ALS rep or the OT have mentioned them. I find it strange that they are willing to supply me with walkers, wheelchairs, porchlifts, ramps etc but nobody has even brought them up as something that I might want to get. Maybe because I would have to pay for them myself? Anyway, thanks for the suggestion. I was not wearing shoes this morning and I think that was why I tripped. It is a drag having to wear shoes in the summer.

I know what you mean about feeling productive and I think that is where some of the anger that we as PALS sometimes exhibit comes from. Sure some of it is EL but also a lot of it comes (at least in my own experience) from feeling useless and non productive. When you can't work and can't play (at least play as you formerly knew it) it is very hard to stay positive. I think that is common in retirees in general and is even more an issue in someone who is forced to retire because of a disease like ALS. I get very frustrated when I not only can't do things but can't explain how to do things either.


Do you have a pool of your own? I would love to go swimming but I don't know how that would work with my PEG. If anyone has any ideas on the subject i would love to hear them.

[mare]

No pool of our own. We have a great community fitness center; it has fitness gym with weight machines, gym for basketball as well as a large pool (2 actually- 50 yds. each)
Lots of activities for babies up to seniors! It is a wonderful place!

Due to an old football injury of his knee (they didn't repair the cartilage back then just removed it), he can't do weight-bearing activity, like running. So, swimming has been a big part of his aerobic w/o. I'm talking 2miles/40min.. I believe that had alot to do with his first FVC of 149% !!! ( his neuro said, WOW- off the charts!)

He has been decreasing the frequency & distance due to fatigue & soreness. He really hates the loss of that activity- he enjoys it so much. It got to the point he couldn't get out of the pool, but they have a lift he can use himself to raise up & out of the water.
But, the walk to the locker room without his cane & AFO's is just too hazardous!
(less than 10yds., but after swimmimg, he is really tired.)

He told me yesterday, he didn't think he would make it out to the car. He came home & started to search for info about w/c vans. He knows what's coming.

Geez, I thought I was prepared- he has had a slow progression, I've read as much as I can, I know what's coming- so why does it still feel like that "first kick in the gut"?

I don't know about the PEG & swimming- you'd have to check with your dr.
Also, the AFO's are only for foot-drop. If the cause of you tripping is from, say weakness in not being able to lift you leg, as opposed to your actual foot pointing down- thus your toes hit the ground- the AFO's won't make a difference.

[BarryG]

Mare, I have never been a runner as I didn't see the point (except for that time in high school when I had to run from the much bigger ex-boyfriend of a girl I was seeing) but I do love the water. I am impressed about an FVC of 149%, that is something! Swimming is the best workout but I would be happy with just floating around. I am an ex scuba diver and I just love the feel of the water and the weightlessness of floating so I will definitely ask the doctor.

I think that my toe tripping is foot drop because my my sock now has a hole in the top of my big toe where it rubbed on the concrete so I will be asking the doctors about AFOs too.

I hear you about the "first kick in the gut", every thing that I have to get used to feels like that. No matter how slow, it is too fast. I am very sorry that Jim has started to look for vans, even when you know what is coming it is a big step. We had a guy come by last week to measure our house for a porch lift so I know how he feels.

[thelma313]

I also know what that "first kick in the gut" feels like. I felt it last night when I went to visit my parents and my Dad was in his wheelchair. I knew he got the chair this week but seeing him in it really did feel like a kick in the gut. I hated it when he stopped talking and now I hate it even more that he can't walk anymore. His hands are becoming dramatically bony too. It's amazing though that he is still smiling, still fighting, still trying to focus on the positive. I don't know how he does it but I am so grateful for his attitude and his outlook.

Barry, my Dad was in the pool every day this winter while my parents were in Florida. He's a swimmer like you. I love it too! I hope you get to do some swimming soon and that the PEG doesn't interfere. My Dad didn't have his PEG yet at that point so I don't know anything about that.

[mare]

..."I don't know how he does it..." He can do it because he gets to see your sweet face, hear how much you love him & how proud you are of him!

[thelma313]

I am so proud of my Dad. :) Thanks Mare. You are very kind.

[Blackpool]

I also had to retire in May because it was to hard to walk and breath at the same time I would have prefered to quit on my terms.I agree about opening up to friends, it can be overwhelming at times when everbody comes together like I have 8 people coming to stay from Washington,England,UK,and BC in August, but it keeps you busy.My husband and I will escape to Banff tomorrow just the two of us, we probably wouldn't be doing that if I hadn't been forced to retire.I am looking for those silver linings in the dark clouds.

[GlenBrittle]

Hey Barry,

Hope you have a good spot for that porch lift.

I had an architect design a deck so that we could put the porch lift up to into the front door.
He came with the original plans and asked us why we were not going to put it in the garage. Initially , I thought the porch was going to be cheaper , but you know how things go , it turned into a terrace with a screened in section so I could sit outside without donating blood to the skeeters. Well that turned into the "if you are going to spend that much , why not get that new garage I always wanted." Plans have been approved for a new attached garage, with room for a porch lift to go straight into the house, and still enough room to pull in with a full size w/c van (that I don't have yet).

Its only money EH !

Funny , I didn't get the first kick in the gut. It was more like in the stones.

Note for the W/C Van hunters - don't procrastinate - someone else will get it (bastard , that was my van). ;)

Glen

[rick/Wpg]

Hey Kevin & Nishant....yea...quitting is a big step...tough no matter how you do it:(
Mare...wow! That is a great fvc for your hubby! Mine was 125 at diagnosis Feb.08 - did a bit of scuba and think that helped but 145 is awesome...I am down to 85 now
Glen is sooooooo right...grab the equipment early as you can...things can move fast and that stuff is not always available when you need it!
Also agree with Glen...the kick feels a bit lower down than the stomach:0
Rick