I'm scared and feel like giving up

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smblaha

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DX UMND/PLS
Diagnosis
12/2009
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US
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IL
I'm newly diagnosed with PLS. I have been on so many different medications over the years only to find out that none of them would help me in the end. I'm slowly losing the use of my legs, my left side is getting weak and now I talk like I'm drunk and choke on my own saliva.

I had Guillian Barre Syndrome when I was a kid and this is so much like that. I would never wish this on my worst enemy and I only remember the pain. I feel lost because everything I read is depressing me more and the doctors solution is to take an anti depressant. Just what I need...more medication.

I guess it's like the stages of grief and I hope that someday I can accept this before I just give up. I used to be so active and full of life now I never go anywhere and if it's cold outside I can barely walk. It took me a year to get a job and I finally found one in September only to get this diagnosis in December. I'm afraid to say anything to my job or they will think I am weak.

Is anyone else going through the same thing?
 

joelc

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Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
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This may sound harsh but consider yourself lucky you have PLS and not ALS. You can live an extremely long time with PLS so it is a way to soon to be reacting so negatively.

I have a good friend that has had PLS for over 10 years and has been at the same level the whole time. His present condition sounds like yours.

Please take encouragement from that. Tomorrow will be a brighter day.
 

peter57

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DX UMND/PLS
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10/2008
Country
AUS
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S.A.
Hi, I also have being diagnosed with PLS after several years of symptoms etc.
I have almost the same symptoms as you, walking and talking difficulties, balance and i cannot do fine motor skills with my hands.
It has taken a long time to get the diagnosed, like you.

There are many on the forum, who like us have PLS, some have been diagnosed for a long time and i am sure they will answer this thread in due course.

Hang in there as Joel said, PLS is one of the better diagnosed you can get if you get a diagnosed of MND
(no diagnosed would be best but we didnt get it)

Who knows what is around the corner, so hang in there, i am confident a break through is comming soon.

cheers
Peter
 

Zaphoon

Extremely helpful member
Joined
Aug 2, 2008
Messages
2,855
Reason
DX UMND/PLS
Diagnosis
08/2011
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US
State
Missouri
Smblaha,

Good to have you on the forum! I've been told I have PLS and agree with Joel, it is a much better thing to have than ALS.

As far as your new job is concerned, you were hired on your current abilities to perform it (it's a logical conclusion I just came to). Unless or until you can no longer perform your assigned duties, I wouldn't sweat losing it.

PLS sucks and that's all there is to it but at the end of the day, it's not going away so, we all have to deal with it. Focusing on problems that may come tomorrow is more than I choose to handle so my focus is on the blessings of today. Not to be cliche', but a positive attitude (PLS positively isn't going away but I'm positively not going to let it ruin my day!) can work wonders.

Zaphoon
 

smblaha

Member
Joined
Jan 10, 2010
Messages
10
Reason
DX UMND/PLS
Diagnosis
12/2009
Country
US
State
IL
Thank you for your support and advice. I'm glad I reached out to people who understand.

Thanks
 

kelly

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Joined
Oct 6, 2006
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My husband who is totally dependent on my care wears a bracelet that says "NEVER GIVE UP" ...remind yourself of that every day!
 

DBowman

Active member
Joined
Feb 14, 2007
Messages
74
Reason
DX UMND/PLS
Country
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I was first diagnosed in 2004. My speech pathologist told me that first you'll be upset(saddened), then you'll be mad(how and WHY did this happen to YOU) and then you will accept it. By accept it doesn't mean give in, but that the reality hits and THEN you get down to business!
You look this thing in the "eye" every day and say "With Gods help I WILL get through this day and LEARN something(you'll be surprised what others will learn from your courage-they will TELL you!)
Fear is a natural emotion with this but you can't LIVE fearful about the next moment all the time. When fear invades your thoughts you CAN push it out and think "GOD is WITH me and He WILL help me and I will be *@#%ed if this thing will get the BEST of me!"

God Bless! Diane
 

Al

Legendary member
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
Well spoken Diane. That just about sums it up for a lot of us.

AL
 

macdonas

Active member
Joined
Dec 1, 2009
Messages
51
Reason
DX UMND/PLS
Diagnosis
09/2008
Country
CA
State
BC
I am sorry you are going through this.
S&P
 

Just J

Distinguished member
Joined
Oct 30, 2007
Messages
300
Reason
DX UMND/PLS
Diagnosis
01/2010
Country
US
State
MD
I completely believe in what Diane posted "With Gods help I WILL get through this day and LEARN something". That's just it. One day at a time. I pray for my husbands progression to be slow and I pray for my personal strength so that I can help him in any way possible.
 

drvcolombo

Member
Joined
Jun 5, 2009
Messages
16
Reason
Loved one DX
Country
US
State
NY
Of course your reaction is completely normal and expected. My Mom, only 68, once very active and bubbly is a completely changed person. She is very sad and still cries almost everyday. Sometimes she and I cry together. BUT--she is still alive, its only a different way of life.

It stinks being disabled, and having to rely on others to help you in so many ways. I tell my Mom, be happy that you are still here, and can still get around. OK--you can't run or do many things you used to do, but I am greatful for everyday she is breathing and is functioning. She tells me that her hands burn and feel tingling and painful everyday. She feels like she walks like she is drunk. I am SO proud of her strength and perserverance. I am sure she wants to give up many times. but she is a trooper, and works thr. her problems. And, yes, she cries. Allow yourself to cry. But, find something in each day to make you smile. Really, try to be happy about something.

We were shocked and stunned when we got her diagnosis, (which by the way, the Drs. are still unsure of)--but we all try to take one day at a time. Now is not your time to go. Enjoy your friends, family, pets, whatever brings you joy. Make each day count and don't be in a rush. We have all had a change of life, esp. my Mom. I tell her each and everyday how much she means to me, and how much we love and appreciate her. She is NEVER a burden and we love her more each day. Please cheer up and know you are not alone. I will pray for you too.
 

jl73

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Joined
Apr 3, 2008
Messages
31
Country
US
State
IL
Don't think about what is ahead. Don't think about what you have lost, it only makes things worse. Think about what you still can do. Use what you have that is unaffected. Maybe that means reading a little more, or spending time outside just looking around. Not living life in the fast lane is ok.
 

ValRunk

Active member
Joined
Mar 27, 2010
Messages
47
Reason
DX UMND/PLS
Diagnosis
09/2009
Country
US
State
NE
I was diagnosed with PLS in 9/2009 (one day after my 40th b-day!). I felt a sense of relief that FINALLY that was a diagnosis after a loooooong period of going from one doctor to another, many tests, and a mis-diagnosis!

They are right, don't think about what the future holds and take one day at a time! As my husband and I said when we left the doctor's office after the diagnosis "it sounds like, if you had to get a "sclerosis", this is the one to have"!
 
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