New diagnosis
- Thread starter Lori7
- Start date
- Status
ShiftKicker
Moderator
- Joined
- Mar 16, 2015
- Messages
- 8,397
- Reason
- DX UMND/PLS
- Diagnosis
- 06/2015
- Country
- CA
- State
- BC
- City
- Vancouver
krnNdug
Distinguished member
- Joined
- May 18, 2014
- Messages
- 270
- Reason
- PALS
- Diagnosis
- 02/2014
- Country
- US
- State
- AZ
- City
- Gilbert
I'm glad you shared that you have ALS and that you haven't accepted it. I'm sorry for your diagnosis, but I've found most of the pALS who share and get out are some of the finest people I've ever met. I wouldn't trade my years with ALS for almost anything. They have been very full.
The folks on the forum are great. I hope that you have a good support group. It's was awesome. Never sad, always helpful and encouraging.
Again, sorry that you are here because of ALS, but you are in a gift place on this forum.
The folks on the forum are great. I hope that you have a good support group. It's was awesome. Never sad, always helpful and encouraging.
Again, sorry that you are here because of ALS, but you are in a gift place on this forum.
- Joined
- Nov 5, 2009
- Messages
- 14,274
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- WA
- City
- Seattle
Lori, you've been on this ride for less than a month. It's not a diagnosis you can accept right off. And there may be no magic moment when you will have done so completely.
You just put one foot in front of the other until you need wheels, etc....you get what you need when you need it (well, hopefully a little before, with some planning). But you are still you, doing what you can when you can.
Do you have family support? Close friends that are aware? Taking stock of your resources can help you keep anchored to the person you are and the history you are moving forward with.
You just put one foot in front of the other until you need wheels, etc....you get what you need when you need it (well, hopefully a little before, with some planning). But you are still you, doing what you can when you can.
Do you have family support? Close friends that are aware? Taking stock of your resources can help you keep anchored to the person you are and the history you are moving forward with.
Nikki J
Moderator
- Joined
- Mar 22, 2012
- Messages
- 16,486
- Reason
- PALS
- Diagnosis
- 04/2014
- Country
- US
- State
- MA
- City
- Boston
It is very hard to accept and even after you mostly do you will probably have times of doubt. I asked my neurologist several times if it could be something else ( way past the time it was reasonable) here is a thread where pals talk about it well this is silly but...
Loulou22
Member
- Joined
- Oct 12, 2023
- Messages
- 13
- Reason
- PALS
- Diagnosis
- 10/2022
- Country
- AU
- State
- VC
- City
- Melbourne
Hi Lori,
It took me at least 3 months to wrap my head around my diagnosis- it happened very quickly (within a week, really) and while I was in the depths of that despair, I thought my life was over then and there. I could not see any point where I could function in any capacity in normal life again.
Fast forward 14 months, and sure things are difficult- I can’t do many things, and my body is failing me - but I have come to accept it in some way and I make what I can do count.
There was not one moment I can pinpoint that I realised life can go on, but it did get easier to deal with and now I can say I do have moments of genuine happiness.
As hard as it is, I focus on the present and not on the unknown of the future.
I found a book called The Reality Slap somewhat helpful, if you are so inclined.
It took me at least 3 months to wrap my head around my diagnosis- it happened very quickly (within a week, really) and while I was in the depths of that despair, I thought my life was over then and there. I could not see any point where I could function in any capacity in normal life again.
Fast forward 14 months, and sure things are difficult- I can’t do many things, and my body is failing me - but I have come to accept it in some way and I make what I can do count.
There was not one moment I can pinpoint that I realised life can go on, but it did get easier to deal with and now I can say I do have moments of genuine happiness.
As hard as it is, I focus on the present and not on the unknown of the future.
I found a book called The Reality Slap somewhat helpful, if you are so inclined.
julianuccikelly
New member
- Joined
- Oct 10, 2023
- Messages
- 8
- Reason
- PALS
- Diagnosis
- 08/2023
- Country
- US
- State
- IL
- City
- Champaign
Hi Lori. I was diagnosed this summer, with a 2nd opinion confirming in Oct. I'm sorry to share this in common with you, but so glad you share how strange it feels.
For me, reality hits in waves, and because I've started telling the people in my life, I can see their reaction as sad or fearful. Oddly I find myself trying to cheer them up. It's a strange dynamic.
My spouse and I have shared some very real, painful moments just sitting with the diagnosis. I'm not ready to leave and don't want to 'fast forward' to the end. We are determined to live with it, not die with it right now.
I entered counseling in November, and it's been enormously helpful to give me space to grapple with this thing without feeling like I'm breaking someone's heart. If you have access to a counselor, I so recommend it.
I've also had to modify my day-to-day living, ask for help when I need it, and undergo uncomfortable tests to satisfy insurance so I can get needed equipment. I'm beginning to understand this is just the road we're on.
With the holidays here, I'm hoping you feel surrounded by care. I thought I'd feel loss this year, but I have felt gratitude (surprisingly) instead. Just, if this has to happen, glad for my current level of function, glad for more time to really focus on my family.
Check in when you can to let us know how you're doing. This is a supportive community, and I hope we can both be part of it for a while yet.
For me, reality hits in waves, and because I've started telling the people in my life, I can see their reaction as sad or fearful. Oddly I find myself trying to cheer them up. It's a strange dynamic.
My spouse and I have shared some very real, painful moments just sitting with the diagnosis. I'm not ready to leave and don't want to 'fast forward' to the end. We are determined to live with it, not die with it right now.
I entered counseling in November, and it's been enormously helpful to give me space to grapple with this thing without feeling like I'm breaking someone's heart. If you have access to a counselor, I so recommend it.
I've also had to modify my day-to-day living, ask for help when I need it, and undergo uncomfortable tests to satisfy insurance so I can get needed equipment. I'm beginning to understand this is just the road we're on.
With the holidays here, I'm hoping you feel surrounded by care. I thought I'd feel loss this year, but I have felt gratitude (surprisingly) instead. Just, if this has to happen, glad for my current level of function, glad for more time to really focus on my family.
Check in when you can to let us know how you're doing. This is a supportive community, and I hope we can both be part of it for a while yet.
Denise E
New member
- Joined
- Oct 15, 2023
- Messages
- 4
- Reason
- PALS
- Diagnosis
- 8/2023
- Country
- US
- State
- FL
- City
- Fort Myers
Welcome to a wealth of information and a resource of people who understand some of your many feelings and struggles. I was diagnosed by 3 different doctors in 8/23. I’m still in partial denial. However, this Forum reminds me of the good, happy lives people are still living no matter how long they’ve had ALS. This Forum also is a haven I’m comfortable in because we are all living with the same diagnosis. What keeps me going?
A daily sense of humor. We make kind fun of all the things my family and I do everyday. Great laughs and lots of love.
Welcome and here’s to a New Year we can all laugh through
A daily sense of humor. We make kind fun of all the things my family and I do everyday. Great laughs and lots of love.
Welcome and here’s to a New Year we can all laugh through
- Joined
- Nov 18, 2014
- Messages
- 4,889
- Reason
- PALS
- Diagnosis
- 08/2015
- Country
- US
- State
- South
- City
- The Beach
Hi Lori,
I'm sorry about the diagnosis. There is still life to be lived, even with ALS. I'd do anything not to have it but I try to look at each day as both a gift and an opportunity.
It does take time to accept. I was very busy my first year because I was still working and trying to wrap things up. I wasn't married and had no kids so I had to be my own advocate.
Every day I try to do something that makes me feel useful, even if it's just emailing someone.
Please be good to yourself. Pamper yourself.
I'm sorry about the diagnosis. There is still life to be lived, even with ALS. I'd do anything not to have it but I try to look at each day as both a gift and an opportunity.
It does take time to accept. I was very busy my first year because I was still working and trying to wrap things up. I wasn't married and had no kids so I had to be my own advocate.
Every day I try to do something that makes me feel useful, even if it's just emailing someone.
Please be good to yourself. Pamper yourself.
- Joined
- Feb 14, 2018
- Messages
- 236
- Reason
- PALS
- Diagnosis
- 10/2017
- Country
- US
- State
- PA
- City
- Zelienople
Hi, Julia. Sorry for the DX but glad you found this forum. It is a great group. It sounds like you have a good outlook. I love what Kim said above: "I try to look at each day as both a gift and an opportunity."
As others commented, each new stage has its challenges and there are new adjustments to be made. I'm in my 7th year and still say to my wife, "It feels weird to be like this."
As others commented, each new stage has its challenges and there are new adjustments to be made. I'm in my 7th year and still say to my wife, "It feels weird to be like this."
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