Newly diagnosed. Hopelessness to acceptance?

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Jeanieee

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Joined
Mar 28, 2012
Messages
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PALS
Diagnosis
03/2012
Country
US
State
California
City
Long Beach
Hi all,
It has been a little over a week since my diagnosis and this is my first post. my symptoms seem to progress on a daily basis. I have been essentially bed bound in my condo with a livein caretaker for a few months. I have a 90 year old, healthy mom nearby and a son, daughter in law and grandson 60 miles away, with new baby coming in october. I can no longer do my grapic design work, many friends have drifted away and i don't get the chance to do active grandmothering. and my options for when, where and how to live are causing me great distress as I struggle to keep ahead of my rapidly changing needs. I will ask more about that on a separate post. I can walk a little, use my hands and talk at present. But I seem to have lost my sense of purpose and seem not to be able to let the love I do have in. Unfortunately I do not have organized religion to fall back on.

Sorry to be so negative, but I could use a dose of experienced wisdom. For those of you who have gone before me, how did your cycle of emotions evolve after diagnosis. I feel locked into hopelessness but hear it eventually gives way to acceptance and peace. are there specific steps you took, tools, books you read, etc.

Thanks,
Jeanie
 

Ms. Pie

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You do accept it after awhile. You learn to do things differently. You learn about living with ALS by interacting with PALS and CALS here on the forum. Contact your local ALS Association. They can loan you equipment for as long as you need it, make recommendations for doctors and physical therapy, equipment to aid you in day to day tasks, and all sorts of help. They most likely have a support group of PALS and CALS that are very knowledgable and helpful if you can somehow attend the meetings. I'm sorry you got your diagnosis. Now you need to learn how to live with it and make preperations for the future. Welcome to the Forum Jeanie! Let us know if you have any questions.
 

jb63

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We are all different, most of us come to accept our fate and move on with adaptations. May I ask why you are bedbound? Try not to stay isolated. I did that for a while, wasted precious time depressed in bed. Now I partake in everyday life with my family with devices to make it easier. I am unable to stand and walk, use a wheel chair, slide boards to move from bed to chir, or a hoyer lift if my husband is alone. Depending on your finacial situation get everything before you need it. Medicare is expedited to people with als.
let us knoow more about yourself and circumstances.
 

CGAR

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ON
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ST. CATHARINES
Try staying busy doing things to keep your mind off you know what.

Keep doing the things you can, and when the time comes that you can't do thouse things, then adjust to find a way to do it still.
Through technology, adaptation, and sheer human will, you will find a way to do more than just survive.

There is life after diagnosis, and there is happiness too.

We still live, we just cram it into a shorter timeframe.

Cheers to you, stay positive, and enjoy everything, no matter how little it may seem.

Today the sun was shining on my face, I new it was the greatest day ever and it was only 8:00 am.
I dont remember any of the bad things that happened yesterday, or the day before. Only the good things.

Hang in there, you are loved even though you're not known.

My forum family has been quick to encourage, never judges, and is always there for me, so I inturn encourage you to ask your questions, give your thoughts and live your life to the fullest.

Casey
 

HelenL

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Jeanie, can you work on your computer at home to stay a little more active? I am also a graphic designer, and am self-employed for a long time before my diagnosis... It is important to keep busy, stay with life, and not hibernate. Find out where the local ALSA chapter is, where their meetings are, etc. It's amazing how much it helps, even for those of us who weren't "joiners" to begin with.

Get proactive about what's going on... many of us take supplements, sign up for clinical trials, etc. I learned reikki, which I think helps me. Spirituality isn't about an organized religion, it's about belief. You have to go from the mindset of "I'm dying, I have ALS" when you feel perfectly fine a good part of the time... to "I'm LIVING with ALS" and take it from there. It is what it is...

Good luck, a good friend of mine lives in Long Beach!

Helen
 

Jeanieee

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Joined
Mar 28, 2012
Messages
5
Reason
PALS
Diagnosis
03/2012
Country
US
State
California
City
Long Beach
Thanks for your answers. I am bed bound because I feel really sick. When I stand I feel buzzing and lightheadedness. Almost a grinding type feeling in my very weak neck. Also It can often start a series of vibrations and buzzing throughout my body. Sometimes it feels like a roto rooter inside me that starts at the diaphragm/abdomen and migrates downward to my legs. The cycle can take six hours or longer. It can also start in bed at night when I chage position. Des anyone else feel this churning feeling? Then when it leaves I am even weaker. I ask my neuro (top doc at an ALS clinic in irvine calif) and he says anxiety. I don't think it is. I should also mention that I have been on a brutal benzo withdrawal for over a year as well as having had a toxic reaction to cipro antibiotic. I think my central nervous system may be fried. Up until diagnosis I thought that was all that was going on.

Maybe I should go back on the Ativan as an experiment

Weakness increases daily at an accelerated pace since diagnosis.

I know what you say about enjoying the moment and i so want to, but my physical symptoms keep me from it.

My social area is lacking as well. I am too sick to let many in. My busy son calls twice daily and does lots to oversee my affairs and take me to doc appointments. Paid caretaker is efficient but not warm. Mom is available. But generally there is nobody around except the caretaker.

So I'm suffering physically and struggling to find a sense of purpose.

Jeanie
 

Ms. Pie

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I don't experience anything like that. Are you sure you don't have something else going on other than your diagnosed ALS?
 

joni51

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Sorry you are here Jeannie, but welcome.. Hope you find some answers here that help. Just try to stay positive as you can..
 

Miss

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Jeanie, I never heard my husband describe anything like you are experiencing. The fasiculations were like ripples through his body. Baclofen helped that as well as the spasticity.

Welcome to the forum. We are all here to help.
 

beckysuenc

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Jeanie,
Sorry you have to be here. There is a Lot of wonderful and knowledgeable people here.
I haven't experienced what you are going through, but maybe others can help. Try to stay strong.
Beckysuenc
 

notme

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Give yourself permission to go through the stages of grief. Maker the most of every single day while you can. be proactive--are there any drug trials you qualify for?

Consider things like learning the technology you may need--think of it as 'improving' your quality of life rather than as 'ending' it. After a week--I'd be surprised if you weren't still in the overwhelmed stage.
 

caldona

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I would insist on a Lymes test. My symptoms were not like yours except loss of muscle. 99% of the time I feel great my nurse and the lady who comes in to give me a bath can't believe it they now have three women they take care of and we all have some differences. Medicare pays for bath and nurse
 

tmasters

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Feb 19, 2008
Messages
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PALS
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08/2008
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Anaheim
Hi Jean,

Sorry for your diagnosis. I hope you can find peace. Even without organized religion you can pray and ask God to help you and be part of your life. I am weak but He gives me strength.

Did you receive your diagnosis from an ALS specialist? Did you get a second opinion? I strongly recommend you find an expert in the area (we are practically neighbors) at UCLA, USC, UCI, or Cedars Sinai. A basic neurologist does not have the expertise to give this death sentence unchallenged. Perhaps you have something treatable. Your symptoms seem a little unusual for ALS.

-Tom
 

tammyg

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So sorry you are here. Just like you and your family it is so hard to accept what you have. With my dad it blew this only child away, makes you look at everything differently. With my dad it was a little easier since he was older, I see so many so, so young to get this. Some have not even had the joy of having kids, getting married, some are in college, there is no good time to get ALS,...You have alot on your plate to deal with just peck away, little by little, good luck to you and enjoy the new baby when it gets here. Alot of love on this site.
 
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