It is
- Thread starter thatscooper2u2
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Oh Kim, I'm so sorry to welcome you into the club.
We are here for you, I can attest to how much the support can mean, this family got me through some very tough times.
Take your time knowing you are indeed in shock. We knew that my Chris was seriously ill, we knew that everything no one else would want were being eliminated and wished it would be those things (brain tumor, spinal issue, MS, Kennedy's).
But I remember the profound shock when the words were told to us. Somehow even though I knew in my heart, I still believed something else would turn out to be what was happening.
Be very kind to yourself, it takes time to adjust, and it's an up and down process.
hugs
We are here for you, I can attest to how much the support can mean, this family got me through some very tough times.
Take your time knowing you are indeed in shock. We knew that my Chris was seriously ill, we knew that everything no one else would want were being eliminated and wished it would be those things (brain tumor, spinal issue, MS, Kennedy's).
But I remember the profound shock when the words were told to us. Somehow even though I knew in my heart, I still believed something else would turn out to be what was happening.
Be very kind to yourself, it takes time to adjust, and it's an up and down process.
hugs
thatscooper2u2
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Thank you Tillie. I am just numb to be honest. Really don't know what to do next. There is a ALS clinic this Friday at my Nuero and I probably should go. He says the first is the hardest to do because you see so many in different states of progression so I am a little scared to go but think I should....
I also don't know what I want. Some people opt out of venting and decide to go before that. I have such a desire to be here I don't know whats best there either? I don't want to burden my family.
So many thoughts, just don't know. How long does it take until I can see things clearer? I just keep wishing I would wake up and this not be true, but it is.
Nikki J
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There is no timetable for what you feel and when you can deal better unfortunately. The advanced directive thing is hard I think. You can change your mind though at any point. The vent question is a very difficult one and you can't decide that yet. While we are talking about breathing though one thing to research and to bring up early with your team if you might be interested is the DPS ( diaphragmatic pacemaker). There is a narrow window to get it when your breathing starts to be compromised. Once your diaphragm is weakened past a certain point it won't work.
The clinic question. 4 days after diagnosis it will be hard but if you have it together enough by then that you can ask your questions it would be good to go as you say.
The clinic question. 4 days after diagnosis it will be hard but if you have it together enough by then that you can ask your questions it would be good to go as you say.
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patrick123
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So sorry Kim,
We are all family.
We are all family.
andycap
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So very sorry your suspicions were confirmed,but welcome to the forum where you will find knowledge,understanding,compassion,and even some jokes that will make you smile on your worse day.
Andrea
Andrea
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Oh Kim, so many things to take in, I know that.
Numb - yes that is part of the shock, it's perfectly normal, but you probably notice that emotions also jump about wildly, sometimes every minute or two, then the numbness sets in again for a while.
You don't have to make any big decisions this week!
Decide on the clinic when Friday comes, things are too up and down to know today how you will feel and cope in another few days time. Maybe find out when the next clinic is held so you know how long it will be if you don't go this week.
Nikki raises a good point on asking about the DPS now, so you catch that window of opportunity if you decide you would like to go ahead.
I don't know how long til you see things clearer but I can guarantee the first month is a doozy and sometime in the second month most people start to feel they are stabilising their emotions again and finding their way into the new reality.
Numb - yes that is part of the shock, it's perfectly normal, but you probably notice that emotions also jump about wildly, sometimes every minute or two, then the numbness sets in again for a while.
You don't have to make any big decisions this week!
Decide on the clinic when Friday comes, things are too up and down to know today how you will feel and cope in another few days time. Maybe find out when the next clinic is held so you know how long it will be if you don't go this week.
Nikki raises a good point on asking about the DPS now, so you catch that window of opportunity if you decide you would like to go ahead.
I don't know how long til you see things clearer but I can guarantee the first month is a doozy and sometime in the second month most people start to feel they are stabilising their emotions again and finding their way into the new reality.
poppies
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Hi Kim. So very sorry that you have received a final diagnosis. The first weeks and months after diagnosis are usually a rollercoaster of ups and downs with many questions along the way. Everyone is so helpful here. It got me through it when my husband was diagnosed and no one around me could possibly understand. Wise advice I got was take it one step at a time. Thinking of you and sending you strength.
Marty, I am so glad the antidepressants are working. What a relief for you as you start to feel like you are coping better.
Marty, I am so glad the antidepressants are working. What a relief for you as you start to feel like you are coping better.
Dusty7
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Kim, sorry to welcome you to the club, but if you have to be here "slow progression" is absolutely the way to go. You had an unusual presentation and your progression seems pretty slow, so I hope you'll be one of the lucky 10%.
I am slow progression and I would guess my symptoms first arrived about 2 years ago, with diagnosis about 16 months ago. I am still mobile (with a cane) and I plan on staying that way for quite some time. There is definitely life after diagnosis, so keep on living.
I am slow progression and I would guess my symptoms first arrived about 2 years ago, with diagnosis about 16 months ago. I am still mobile (with a cane) and I plan on staying that way for quite some time. There is definitely life after diagnosis, so keep on living.
MaxEidswick
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like all the others, sorry to meet you here but welcome!
The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect
fear, anger, bitterness, and a new awareness of life. I have found that being active here on
these forums has helped me in way I cannot explain, but you will see.
before trying miracle cures, etc., ask here, go to alsuntangled dot com.
Lastly, anxiety can be debilitating so beware.
Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick
people, especially w/ respiratory problems.
also remember the basic PALS rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have
------
If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to
friends and family, too.
Kind regards and warm welcome,
Max - Wednesday, December 31, 2014 1:35:59 PM
ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
.
The next weeks, months will be an emotional roller coaster. Try to go with the flow, expect
fear, anger, bitterness, and a new awareness of life. I have found that being active here on
these forums has helped me in way I cannot explain, but you will see.
before trying miracle cures, etc., ask here, go to alsuntangled dot com.
Lastly, anxiety can be debilitating so beware.
Lastly, lastly DON'T FALL, take vitamins, keep your calorie intake up, and stay away from sick
people, especially w/ respiratory problems.
also remember the basic PALS rules:
------
#1 don't fall
#2 don't hang around sick people, at 1st sign of respiratory issue go to doc
#3 conserve energy, rest, never push it, try to relax
#4 stay warm
#5 take vitamins
ALS is about living, not dying!
-----
ok well, we take what we get and be glad for what we have
------
If you have not yet, go to youtube and search "ALS ABC" and watch all 3. I sent those to
friends and family, too.
Kind regards and warm welcome,
Max - Wednesday, December 31, 2014 1:35:59 PM
ALS sucks, but It Is What It Is ... and someone else has it worse so I'll try not to complain today!
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
.
texastracy
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Kim,
I go to that clinic. They are wonderful. This forum is great.
Tracy
I go to that clinic. They are wonderful. This forum is great.
Tracy
nebrhahe53
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Im so sorry Kim. It sure is a change, not just about health, but worrying about finances and insurance (if you arent a vet anyway).
I went to the first clinic and had a shock when I saw people diagnosed around the time I was unable to speak and walk. I got really depressed that night and have anxiety attacks often.
On some good antidepressants and benzos now.
I hope your progression is slow.
Neil
I went to the first clinic and had a shock when I saw people diagnosed around the time I was unable to speak and walk. I got really depressed that night and have anxiety attacks often.
On some good antidepressants and benzos now.
I hope your progression is slow.
Neil
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Hi Kim, and, sadly, welcome. If you decide to go to clinic tomorrow, I hope you come away with the sense that there are people there who will help you through this (in addition to us).
As you've already read, if you must deal with this disease, you couldn't find a warmer support group than this one.
As you've already read, if you must deal with this disease, you couldn't find a warmer support group than this one.
hjlindley
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Each patient is remarkably different. Mine started in my right hand seven years ago, and I still have no bulbar symptoms. I can eat, talk, and swallow. But don't ask me to do anything with my hands or go upstairs. And this is very hard to remember, but only your motor muscles are changing. Your heart your soul and your personality are just the same. Good luck and we will all help you anyway we can.
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