just diagnosied

[snowmandb]

hi all i just was diagnosed with als just got into this site and
trying to figure out how it works

 

[ottawa girl]

Sorry for your diagnosis - but happy you found us.

It'll take awhile for you to grapple with your new life... But there certainly is lots of living to be had after diagnosis. I hope you get all the help and support you need; we're here to offer reliable information, encouragement and a few laughs along the way.

Looking forward to getting to know you.

 

[fallinggirl]

Welcome to the site! Sorry for your diagnosis. You certainly are among people who know how you feel.

 

[bowser]

Welcome !

Minnesota ALS chapter say the number of people in the region with ALS remains constant.

For every new member diagnosed, the grim reaper takes one

 

[affected]

hi snowman and welcome to the group no one wants to join, but those that do need it and find so much support!

You have made a good start, you have started a new thread and said hello, now you can reply here to keep this conversation going, and you can read other threads and reply to them as well.

Sorry for your diagnosis, but we are all here with you

 

[ottawa girl]

Bowser,

I know you're new here, but referencing the grim reaper is not exactly very welcoming and or comforting to a new PALS. Please, think back to when your own life was shattered by the diagnosis. Were people kind to you or just tell ya ' the jig is up fella?'

I'm sure you're a great caregiver to your PALS, ( aka 'the wife') but please try to be a bit more sensitive to the PALS here.

Let me assure you Bowser, that I'm not under illusions I'll out run ALS, but hope is a wonderful gift from God. I cling to hope. And positive encouragement is a wonderful gift from other forum members. I cling to the positive attitudes shared by most people here. There is a reaper waiting for each of us - but it needn't be grim.

Welcome !

Minnesota ALS chapter say the number of people in the region with ALS remains constant.

For every new member diagnosed, the grim reaper takes one

 

[jellis86]

Sorry for your diagnosis snowmandb, but glad you found this site.

 

[Cricket]

Hi snowman, welcome. Never hesitate to reach out. Lots of good and wonderful support here.

 

[snowmandb]

I see from the posts there are people from all over, is there anyone out their from central pennsylvania? I will be going in mid november to my first clinic appointment in danville,pa
and wondering what happens I was told to expect to be there about 3 hours

 

[consilience]

I was diagnosed about 8 weeks ago. For the first two weeks I was in shock and depressed. As the weeks have gone by I find I have good days and bad. The good ones are when I recognize that spasms and aches are part of my new reality and there is no value in panic. On bad days I panic and image the worst. I'm not afraid of death, it's part and parcel of being mortal. Granted I would have preferred to be healthy for much longer, but that was not in the cards. Generally I remain pretty healthy. I feel my body weakening, but that is my new reality. Like everyone I fear the loss of independence, but I now also appreciate the beauty in every day in a way I did not always do before. I have great friends and support too. I plan to leave my job in the next five weeks and will do some traveling I've always dreamed of (the new proverbial bucket list) and I'm planning in weeks and months, not years. I am of course looking ahead and preparing for the lose of my autonomy, but I'm hoping that even with paralysis that I will still be able to look at paintings or actual landscapes and appreciate those moments or close my eyes and listen to the beauty of music. I'm not an idealist, I know my end is not likely to be so beautiful. But I am not without hope for advances is treatment. In all I'm learning to live with MND/ALS.

 

[consilience]

Snowman: I'm not from Pennsylvania, but I can tell you that my first clinic visit lasted about 4 hours. I spoke to a nurse, doctor, social worker and respiratory therapist. I'm not sure how you or others feel, but the clinic visit made me feel like I was doing something and that alone made the hours worth it.

 

[pearshoot]

you are right been going to clinic every three months since sep 2010 even though its a 190 mile drive. pick up a good tip almost at every visit I can pass along. I believe it has helped maintain a slow progression