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- 1,013
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- Lost a loved one
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- 04/2014
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- VA
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nzarkos,
I'm sorry to have to welcome you, here. I am glad, however, that you've found us. There is a lot of good information and even better people within these walls.
Progression is a difficult thing to measure. My wife, Darcey, was told that she was within 6 months of life's end in March of 2016. That prediction was based upon the progression that her neurologist had been following. Darcey is still with us and will, I believe, finish out 2018. So progression, which varies from person to person, can also vary for each individual person... in that it can speed up and slow back down.
Our lessons were to take advantage of all that you can do today. As progression begins to make certain tasks or functions difficult, find new ways to do them or find other things to do. There is still a lot of life left after diagnosis, once one gets past the shock. Elect to live each day well (in spite of ALS) if you can.
My best...
Jim
I'm sorry to have to welcome you, here. I am glad, however, that you've found us. There is a lot of good information and even better people within these walls.
Progression is a difficult thing to measure. My wife, Darcey, was told that she was within 6 months of life's end in March of 2016. That prediction was based upon the progression that her neurologist had been following. Darcey is still with us and will, I believe, finish out 2018. So progression, which varies from person to person, can also vary for each individual person... in that it can speed up and slow back down.
Our lessons were to take advantage of all that you can do today. As progression begins to make certain tasks or functions difficult, find new ways to do them or find other things to do. There is still a lot of life left after diagnosis, once one gets past the shock. Elect to live each day well (in spite of ALS) if you can.
My best...
Jim
- Joined
- Jul 29, 2017
- Messages
- 3,933
- Reason
- PALS
- Diagnosis
- 07/2017
- Country
- US
- State
- OR
- City
- Southern Oregon
Welcome nzarkos. One of the many hard things about this disease is that it’s hard to make plans because progression is so hard to predict. It’s definitely not linear.
I would say to go ahead and make plans as long as they can be canceled or modified. Do what you can still do while you can.
Everyone will advise “don’t fall” because falls speed up progression.
I would say to go ahead and make plans as long as they can be canceled or modified. Do what you can still do while you can.
Everyone will advise “don’t fall” because falls speed up progression.
- Joined
- Nov 5, 2009
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- 14,258
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- Lost a loved one
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- 00/0000
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- WA
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- Seattle
Sorry to welcome you here, Chicago. ALS progresses over time more silently for everyone, but at different points big changes may be noticed, like suddenly being unable to walk more than a block or having problems breathing. So it is good to keep ahead of equipment needs with your clinic and as Karen says, do what you can, while you can.
Best,
Laurie
Best,
Laurie
whereswaldo
Active member
- Joined
- Mar 3, 2018
- Messages
- 83
- Reason
- PALS
- Diagnosis
- 06/2013
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- US
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- Ca
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- Northern
After diagnosis, we started attending support meetings in a large town a little distance from us. Within that group there were 10 of us that were diagnosed within 6 months of each other, a few were in chairs and the rest were walking. Only 2 of the group progressed in the same way, but not at the same rate. Since then we have lost a couple, one to ALS and one to something else. One is still walking, and falling,(he is a thick headed German, sorry Wish, but we love him anyway.), and the rest are in chairs.
Five years in and we all are in different stages even though we started in the some what healthy range. We are all different and will remain that way. Along with educated doctors and nurses estimates and your own experience, you will figure your rate. Lets hope for slow progression.
Five years in and we all are in different stages even though we started in the some what healthy range. We are all different and will remain that way. Along with educated doctors and nurses estimates and your own experience, you will figure your rate. Lets hope for slow progression.
- Joined
- Aug 28, 2013
- Messages
- 2,871
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- PALS
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- 12/2018
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- US
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- NC
- City
- Get Real
NZARKOS, As so many before you... maybe you might share your journey to the
confirmed diagnosis of ALS.
Like when it started, who did you see, what test confirmed the diagnosis, what part
of you body was onset, what clinic are you going to.
It helps other members better understand your situation.
It's optional but... most do share how, when and where.
confirmed diagnosis of ALS.
Like when it started, who did you see, what test confirmed the diagnosis, what part
of you body was onset, what clinic are you going to.
It helps other members better understand your situation.
It's optional but... most do share how, when and where.
nzarkos
New member
- Joined
- Jun 25, 2018
- Messages
- 2
- Reason
- PALS
- Diagnosis
- 05/2018
- Country
- US
- State
- IL
- City
- Chicago
Had a bad car accident last year in May. I had a cervical fracture. I had to wear a hard collar for three months. After I took the collar off my right arm was weal. I thought it was a result of the injury, went to the doctor after Christmas she did a series of X-rays and MRIs everything was normal they sent me for physical therapy but the arm got weaker and smaller. Thr doctor at Kaiser set up an EMG as I was living in the Bay Area after my husbands transfer. She told me the EMG was consistent with findings of MND and then I came home to Chicago and got a second opinion at U of C they confirmed the diagnosis clinical exam and EMG again. Still walking talking and eating but I have asthma my FCV was 75 in May going next week to the Pulmonologist
Nikki J
Moderator
- Joined
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- 04/2014
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Very sorry to welcome you
As everyone says progression is neither linear nor completely predictable. Your neurologist may hazard a guess after 6 months or so whether you are fast or slow but as stated above do things now , don’t fall and hope for the best.
I look forward to getting to know you
As everyone says progression is neither linear nor completely predictable. Your neurologist may hazard a guess after 6 months or so whether you are fast or slow but as stated above do things now , don’t fall and hope for the best.
I look forward to getting to know you
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