How do you get to Acceptance?

[starente15]

We just heard my father's diagnosis two weeks ago and I'm still struggling. Logically my mind can process what's going on and will happen yet I find myself cycling through all different emotions constantly and cannot fully accept this. I have constant anxiety and fear of the unknown now and can't find a way to wrap my mind around everything.

 

[starente15]

Also, I'm a reader and like to know as much about things as possible. If anyone has book recommendations it would be greatly appreciated! Thanks

 

[MaxEidswick]

acceptance is death, to crease living.

the choices are many: drag it out, ventilated vegatable, peg/pap/etc to 'enjoy' what remains. religion and or insurance preserve us from any peace jusr like the ffda insures us of anf respite.

 

[patrick123]

Hi Starente,
What you are going through is normal. Try to to be supportive, and all you can. Sometimes a CALS can have a rougher time because you see the changes happening. And feel a little lost on what to do now. Learn all you can. There is a great video on u tube called the ABC's of ALS. It very informative. Remember there is life after being diagnosed.

Patrick.

 

[dalvin]

Starente, the process is a grieving process. Denial, anger, acceptance and a couple others. There is no correct order or correct time frame. Everybody is different. Main thing is to allow the process to happen. Get counciling if needed, use meds if needed.

 

[LoveMyKids]

I think there will always some disbelief and feeling like you are in the Twilight Zone. Dom"t sweat it. I think I found a measure of peace when I realized the illness was beyond my control. I focus on making sure my loved one is happy and comfortable. We take one day at a time and try to enjoy it.

One lesson I have learned...be there for your loved one in the way they want. Ask what they want or need. It's not about what I want for my PALS but what she wants.

Ok, I am on an iPad & cant see your post while I'm typing. So this reply probably has been no help to you whatsoever. It probably didn't touch on anything you asked. All I can do is just laugh at my lack of gray matter. That is what gets me through this ALS life, an appreciation for the absurd, laughter, and not feeling like I have to have all the answers.

 

[starente15]

Thanks all! I used the word "Twilight Zone" just the other day. I feel like my brain is short circuiting with all the information and thoughts swirling around.

 

[pastor]

Starente,

Because of the stages of the disease I am not sure acceptance every really takes place. Each time yo "accept" where you are it changes. Instead I had to learned to live with and adapt to my families new "normal". I made a decision (daily) not to mourn while my mother is alive. But to capitalize on every moment that i have her. I am not sure aceptance comes. But a new way of living and loving evolves.
Let yourself feel whatever you feel. There is no right or wrong way to process this journey. Just dont let the "good" moments be overshadowed by "what might happen".

 

[starente15]

That's helpful pastor

 

[Sunvista]

I am newly diagnosed. Acceptance? What other choice do you have?

 

[Doglvr]

I know what you mean, every morning when I first wake up for just a second I wonder if I just had a bad dream but I then I wake up and it isn't

 

[cheerleader]

Something I have learned is you live this disease 24/7 and can never get away from thinking about it, planning for it, and as a CALS, the days are filled doing all the things your PALS used to do. But you cherish the sweet and loving times- and are grateful that you KNOW your spouse, parent, friend, is terminal so you are more loving and patient and willing to go the extra mile. I have personally found our marriage is even better, because nothing is taken for granted and the little things that used to make you crazy are no longer important. Acceptance WILL come but it is never an easy journey! Donna

 

[MaxEidswick]

>I am newly diagnosed. Acceptance? What other choice do you have?

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.

I do know it is healthier to be thankful for what still works than to resent what doesn't (easier said than done )

remember the 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

ALS is about living, not dying!

fwiw,



Max - Thursday, October 30, 2014 1:31:22 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


.

 

[affected]

I don't believe acceptance is death at all.


I think it is the only way to find some peace whilst the monster does what it will to either yourself or your loved one.

How do get there is a constant process, and even when you do, you never quite stay there in a stable way.

But you have only just been diagnosed, this time is so hard on the emotions and you can't take control of anything. It's like you are a rag doll just being thrown around the room hitting the walls. It will level out a bit, you will move through the initial shock and grieving and you will come to some place. That all sounds so vague, but it is true, and we all know exactly what the early times after diagnosis was like. Twilight zone indeed.

Please just be kind to yourself and know that it is going to get better, but it is going to overwhelm you at times, but you will come through.

Do talk to your doctor about medications, support groups, counselling or any other kinds of support that you or your doctor think could be worth trying. We all use different mixes of supports here, not a single one of us just goes through this without a lot of support. Of course, this place is one of them!

 

[Sunvista]

For me it is a matter of perspective. I am 63 but was fortunate enough to travel the world extensively as a young man through my job. I created a reverse bucket list. That is a list of stuff I never expected or particularly wanted to do but found myself an opportunity to. I've cruised the fjords of Norway, climbed Mt. Vesuvius, jumped from a plane, strolled the Champs E'lysee in Paris, skied the Swiss Alps, four wheeled it on the tundra in Iceland, sipped wine on the Isle of Capri and slept in the bed of the Dame of Sark (look it up)...not with her in it of course. I even attended the London premier of Pink Floyd's Dark Side of the Moon. My reverse bucket list is two full pages long. I've met thousands of interesting people along the way.

If I were diagnosed with ALS at age 32 and never been anywhere or done anything I think I would be totally devastated. As is it I'll just take the bad with the good and ride this train to its last stop. I'm content with little things now like getting out of bed each day and not falling over. But ALS is the last thing I think about at night and the first thing in the morning. Is that acceptance....I don't know?