Acceptation wrong or right?

[Mike in Maine]

There was not too long ago a time when I vowed I was going to go on living my life like I always have. It seemed those three letters (known for a while I was crossing over from PLS to ALS) popped up in everything I did, they were there, seemed those three letters ALS were branded in my mind. Now I look at it, to steal Max’s saying “It is what it is” (hope you don’t mind Max). I haven’t giving in still trying to do everything, but I’m being more real about things. Went down to the Mall with my wife and we took the wheelchair (walking any distance is hard), I didn't feel self-conscience just went a long for the ride and we did more than we could have done before. A few weeks ago this would never would have happened; I would have fought it the whole way, me in a wheelchair, No way. I feel more at ease and I can go a good long time without those letters popping into head, not even having those anxiety attacks anymore. Is it wrong to accept ALS as just another path to travel in life and make peace with it or should I fight at it at every step. Is this acceptation of the disease a normal part of the process? Not great at expressing myself with the written word, hope get my drift.

Mike

 

[Candle2014]

I think you ARE living your life and should pat yourself on the back. If doing so means accepting your limitations, then so be it that doesn't mean ALS owns you. Far better to enjoy the outdoors in any way you can with your family than hiding yourself away.

 

[affected]

Mike, thanks for sharing this, what an important topic.

I'm not sure about normal, but I will say that I applaud you for your attitude of getting in the wheelchair and going to the mall with your wife. Conserving energy is so sensible if you want to accept that three lettered word and make the most of what you do have.

Fighting it becomes a very different concept! If you fight against ALS it just wins even faster!

 

[davbo49]

it is what it is. i never thought i would be in one to. im not going to let this dame als take me down like this. if it's going to take a wc to get around tape to keep my eyes open sticks in my mouth to type. im going to do it. at the first i didn't want no one to see me like this. you know what i don't give a s... any more you got to do what you got to do.

 

[mpnatx]

There was not too long ago a time when I vowed I was going to go on living my life like I always have. It seemed those three letters (known for a while I was crossing over from PLS to ALS) popped up in everything I did, they were there, seemed those three letters ALS were branded in my mind. Now I look at it, to steal Max’s saying “It is what it is” (hope you don’t mind Max). I haven’t giving in still trying to do everything, but I’m being more real about things. Went down to the Mall with my wife and we took the wheelchair (walking any distance is hard), I didn't feel self-conscience just went a long for the ride and we did more than we could have done before. A few weeks ago this would never would have happened; I would have fought it the whole way, me in a wheelchair, No way. I feel more at ease and I can go a good long time without those letters popping into head, not even having those anxiety attacks anymore. Is it wrong to accept ALS as just another path to travel in life and make peace with it or should I fight at it at every step. Is this acceptation of the disease a normal part of the process? Not great at expressing myself with the written word, hope get my drift.

Mike

Thank you Mike for sharing your thoughts.
Those three letters are burned into my mind. ALS is a constant, every minute while I'm awake.
You're a little ahead of me, as I see a wheelchair in my near future.
It seems recently that I've begun to accept my diagnosis too. And have adopted IIWII. (Thanks Max).

Best wishes for a great Holliday,
Marty

 

[gooseberry]

Mike, my husband fought the diagnosis and idea of als for so long. It caused a lot of anxiety and stress because we couldnt really talk about it, it isolated us because he refused to use a wheelchair. In short everyone in our home was miserable. I wont say he has embraced the diagnosis, but now that he is willing to work with it, it is much easier for everyone in our family to have an improved quality of life. Steph

 

[texastracy]

There are days now that I don't hear in my head "I have ALS". I'm in a PWC but I can go places, feed myself, and do useful things. I AM ALIVE. That's the part that keeps me going. I don't know when I will die, just like everyone else. Why waste time worrying about it?

 

[Jeff Long]

Mike,
Great thread, and great attitude! I was fortunate that after my diagnosis in 2011 I had very slow progression; gave me time to come to grips with the changes that are inevitable. I got my van last week, and until then had never used the PWC in public. Hated the idea actually! When I walk, people may get the idea that I am slow and unsteady... when I ride there's no doubt I am unhealthy! About the mall trip... first, I hate malls. I think they are evil and nasty little places Triple that idea around Christmas, when 120% of a town's population is at every mall at the same time! Where the heck do they all come from?!?!
Anyway, this Saturday I went out alone to run a couple of errands (manly ones.... gun store, beer store, home improvement!) and left the PWC in the van. In what can only be described as a result of brain deterioration caused by ALS, I decided to stop at the local mall before heading home. I don't know much, but I did know that walking the mall wouldn't work so I took my first public ride in the PWC. Started out poorly when I got to the doors and they were not automatic and had no handicap 'push to open' button! It wasn't pretty but I managed, and after that the whole deal went pretty smoothly. Wasted an hour and bought nothing, but did get over that initial public ride without feeling like a freak show!

Fighting this disease is probably best done by smartly using the ideas and equipment that save us the most physical strength and give us some measure of stamina, no matter what others may think about us while we do! Ride on, brother, and enjoy the freedom it gives you!

 

[azgirl]

Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.

Michael J. Fox


Yes, good and important thread. It's been hard to give in to going out in public with my walker or scooter but it beats sitting at home all the time. I figure we are all just finding our way through it.

IWII

 

[Graybeard]

What other people think of me is none of my business.

 

[davbo49]

i never thought of the mall. maybe i could get a race going there.

 

[Jeff Long]

i never thought of the mall. maybe i could get a race going there.

A race is a great idea! Give the 'mall walkers' something to watch.
During the ALS Advocacy conference in D.C. this year I challenged Chris Rosati, the now famous Krispy Kreme King, to a race around the lobby of the JW Marriot Hotel. I confess he beat me handily, but it sure was fun!:twisted:
I think I will supercharge the Permobil and try for a rematch in 2015...

 

[4tloml]

Graybeard, awesome POV!

And it seems people, in general, are so self-involved, I wonder how many really SEE more than just a cursory glance, let alone give any thought. I'm just a CALS, not a PALS, so I can't really know how it feels, but anything that gives more energy and stamina to do the things that you really want to do can't be a bad thing in the bigger scheme of things, can it?

Davbo, hope you've got a horn on that thing!

 

[Nikki J]

Alternate ways and conserving energy are the way to go. My neurologist basically told me I was risking faster progression because I have been overdoing it. I actually get new symptoms that resolve with rest which is why it came up. The longer it takes before I give in the longer to resolve so it made sense that if don't back off it might stay

 

[davbo49]

nikki it all right to have fun but you need to watch how you do it. you don't want max on you for braking one of hes rules. you know we need you on here to keep us in line so don't be overdoing it. well it seems like we don't have to do much any more to be overdoing it....... that's why we have pwc's ....... let the race begin.