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Chief

Member
Joined
Feb 14, 2010
Messages
23
Reason
DX UMND/PLS
Diagnosis
07/2009
Country
US
State
California
City
Fontana
Hello everyone, so happy to find this site. In Oct.05 I was Dx with Acoustic Neuroma (a noncancerous tumor thank GOD!) had it removed and after surgery left me with:

Partial facial paralyzation to left side, tear duct in left eye works sporadicly so I struggle with dry eye..... (I am no longer able to whistle either which I loved to do, so no more cat calls, sorry girls..lol).

Loss of balance........had to install a grab bar in the shower cause when I closed my eyes to wash my face/hair would loose balance and fall..."Help! I've fallen and can't get up"......lol

Total hearing loss in left ear..........except for the dang ringing in my head that is near deafening and goes on 24/7.

Tasted buds near wiped out, so food was an entirely new experience...though not a good one i might add.

Sense of smell totally different......funny though I still smell if I skip a shower?

However I was still able to function somewhat normally and began to adapt. then about two years ago I started to notice a little trouble walking a strait line, walking up and down stairs became difficult and I had to hang on to handrails for fear of falling.

In Sept.09 went to see Doc. and was Dx with PLS. I was floored!.....did all the "why me!" and #@%&# I could......after settling down I started doing research to get a better understanding of what exactly it was I had and ultimately has brought me to this site.

So now I am struggling with the usual symptoms of weakness and spasticity but so far it is mostly in my legs and more so in the left one. I am beginning to feel some strange sensations in my arms, hands and speech is sometimes slurred but mostly when I'm very tired.

I have "Good days" which are almost great and seems like I might be getting better and then there are the "Bad days" where its all I can do to get out of bed and the COLD is rough that just stops me dead in my tracks but I live in sunny California and the cold is not to severe.

So the PLS combined after effects of the Acoustic Neuroma (weak legs with tendency to fall plus loss of balance) make for one heck of a challenge.

Oh and did I forget to mention that I was also Dx with Spinal Stenosis.....WTF!(please excuse).

Anyway thanks for reading and letting me share...all in all I'm doing great and continue to exercise by stretching, walking, semi push up, dancing, (sure wish I could still run), and yard work at home daily, doing as much as I can while I still am able too.

May the good LORD bless us all.
 
Thanks for sharing your story, Chief and welcome aboard! Never heard of someone with that combination of illnesses before.

Zaphoon
 
hi and welcome, chief. i have sunny california envy!
 
Thanks for sharing your story, Chief and welcome aboard! Never heard of someone with that combination of illnesses before.

Zaphoon

Thanks Zaphoon for the welcome and for taking the time to read my post. I must say it is very calming to be able to share with people who truly understand exactly what is going on with this illness and how I feel in side. Family and friends don't fully comprehend what if feels like both mentally and physically and the strain we are under but have been very helpful, supportive and sympathetic. How are you doing Zaphoon? I pray that all is well for you and yours.
 
Good day to you paleshia and thank you so much for the welcome. Yes sunny SoCal is very nice especially right now. Sun is out and ski is blue. 78°F/45°F Today Sunny. High 78F. Winds light and variable. got that off the net. Lots to be grateful for! And how is your day paleshia? Hope it's a good one for you. Have you ever been to California? Great place to live or just visit.

Have a great day!
 
I hate mornings! That is when the cramping is at its worst. It's like my legs are saying,

"Hey! We're kind of knotted up down here. Can't you do something about this?"

I calmly reply: "No. The brain has broken the ON/OFF switch."

Legs comeback: "Can't you buy a new one?"

Me: "No, now shut up and stop your griping!"

Legs: "Ah, shucks... a little morphine might be nice!"
 
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Oh Yeah Zaphoon mornings can be challenging. Fortunately cramping has stopped, don't know why but I sure am glad. Most of the cramping I experienced was when I was sleeping! Terrible way to wake up try and jump out of bed in the dark, weak, and groggy....first few time's my wife would be shouting "What's wrong, what's wrong" while I jumped around "Ouch, Ouch, Ouch"....only to trip on some thing or lose my balance and fall.......Whew....don't want to do that again.

Started having trouble breathing yesterday......a little tougher today, chest felt heavy.
Gonna make app to see Neurologist in morning.

I like the "The brain has broken the ON/OFF switch"......well put.
 
Good day to you paleshia and thank you so much for the welcome. Yes sunny SoCal is very nice especially right now. Sun is out and ski is blue. 78°F/45°F Today Sunny. High 78F. Winds light and variable. got that off the net. Lots to be grateful for! And how is your day paleshia? Hope it's a good one for you. Have you ever been to California? Great place to live or just visit.

Have a great day!

thanks chief, today is freezing and snow covered here in the hoosier state...i have never been to california...i want some of that sun!

take care:smile:
 
Hi Chief, welcome to this forum.... Sorry to hear of your diagnosed . not just one but three things going on. How hard that has to be? You will find the folks on this forum very helpful and caring.. Take care, L
 
Hi Chief, welcome to this forum.... Sorry to hear of your diagnosed . not just one but three things going on. How hard that has to be? You will find the folks on this forum very helpful and caring.. Take care, L

Thank you so much for the warm welcome. as for my Dx situation, yes it is fustrating and at times painful.what are we to do......however I do believe it is a new adventure that faces me now, one that is full of challenge and peril I find myself fearful, apprehensive of what lies before me yet I am still confident and hopeful. "Though I walk through the valley of the shadow of death"......The good LORD guides my way..:-D

Good things come from adversity and I am getting excited to find out what is yet to unfold. I mean just look I have found a whole new group of friends... I am Blessed.
 
Hey, Chief! It sounds like you have the right attitude(and fortitude) to handle this stuff(with Divine help)! Yes, you never know what you're made of until adversity strikes!
With all the other issues you have...well...I could only HOPE I would have the attitude that YOU have...already you are an inspiration to us...!:smile
DBowman
 
hi chief,welcome to the forum.
many of us were very active before pls,getting used to a new slower body is hard to adjust to.

i had to laugh at your quote. before pls i loved to dance,always since my teens went out on a saturday night for a boogie.
now when theres music and the urge takes me i dance with my upper body lol.
we have a tv program on in the uk at the moment,were wheelchair bound contestants are taking part in a dancing competition(doubles with a able bodied dancer)

just shows disabled people can do anything they put there mind to.
 
hi chief,welcome to the forum.
many of us were very active before pls,getting used to a new slower body is hard to adjust to.

i had to laugh at your quote. before pls i loved to dance,always since my teens went out on a saturday night for a boogie.
now when theres music and the urge takes me i dance with my upper body lol.
we have a tv program on in the uk at the moment,were wheelchair bound contestants are taking part in a dancing competition(doubles with a able bodied dancer)

just shows disabled people can do anything they put there mind to.

Hi Olly I have seen a program like the one you mentioned, it was very inspiring to watch. I am very fortunate to still be able to dance some and get around pretty good with a cane thank GOD, so I still dance for fun and as a form of exercise.

May I have the next dance.....

GOD BLESS
 
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