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carendam

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Joined
Dec 18, 2012
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11
Reason
DX UMND/PLS
Country
US
State
Nh
City
Berlin
I'm new here. I'm just getting this devastating news that I possibly have PLS.
I would like know how everyone copes.
Any advice Thank you
 
Sorry to say welcome.
Take one day at a time, enjoy what you have, percerverance, tenacity, love , hope good friends and family!
All of which you will find here. I wish you peace.
 
I am in the same position as you. I was really scared at first and thought my life was over but you just adapt and get on with life. I started a blog to get things down as I found if you write things down they don't always seem so bad. Or just talking to people. The main thing is to try and stay involved in things and life in general. When I first found out I may have it I found myself slipping away from everyone and not going out. I try and go out every day even if its just the supermarket with my wife. Just to make sure that I stay out and around people.
Next year once it warms up a bit I am hoping to find a part time job. Just a few hours a week at first to see how I cope. Even if its volunteer work just to try and remind myself that I am still part of society.
 
Carendam & Fedup

Welcome. Since you each indicate you are in the process of diagnosis, I sincerely hope your presence here is premature. Please keep in mind that there are many ailments which are quite manageable and less dire than ALS and similar. If it turns out that your suspicions are correct, I echo Vivki's remarks. One day at the time. Love deeper & hug longer, forgive and seek forgiveness. Once the reality has settled in, get reliable information on all aspects including your future medical requirements, finances, housing etc. (this site is a great place!)

When I joined this forum, I was immediately assured by members that "there is life after diagnosis". At the time, I could not even fathom what that life would look like. Well, I'm here to say- it looks the same as before- only more vibrant, more urgent and more honest. I suppose, it's what it should have looked like all along.

Best wishes to each of you.
 
Amen to that Ottawa girl!
 
Thank you Everyone. I had every test done. I had the als gene test the HSP gene test. I have been through the ringer with tests and bloodwork. Since 2007. I am in and out of the wheelchair. I am starting to lose my speech. My muscle spasms are so scary it's like having a seizure. I still do things around the house when i can. But I am getting tired of dealing with this. I can't walk for crap. Thank god my dr got me a hoveround, thats how I go for my walks in the summer. This is devastating because I used to do everything. Now I am limited.
I guess I have to continue to be strong and apreciate each day I have. Thank you so much.
 
a possible is just that, possible...only devastating when its for real.....pls is exstremely difficult to diagnosed...theres loads of hope yet...good luck..johnny.....
 
carendam, sorry that you found us here, but welcome to our club...

I also am in a pwc fulltime, last summer I was still hobbling along, 3 years ago I started tripping... it sucks, but remember that you have a choice to keep living as well as you can... our new normal...

good luck, and check out the fun threads like Come to Tea and the Pub.
 
IF you get a confirmed d x, there is always life to live to the fullest. You may have hurdles that others don't have to deal with, but life does not stop and neither should you. I began my symptoms about 20+ years ago. I was a soccer coach and was tripping when I was running with my team and also lost my kick. Yet I coached from the sidelines for 16 years. When I couldn't do that anymore, I taught art to high school students and started a photography, which I still do for the theatre, but this is my last season after an 8 season run. I can no longer stand to shoot and I require assistance from my hubby who is my equipment manager. I do hate to have to step down after all these years, but I have already found my next adventure! I started another new business last year and I travel a lot in my pwc as a Travel A gent.

The point is...no matter life throws lemons at you, its up to you to make the lemonade and sweeten it up to be refreshing to all who partake in your life.
 
Thank you AKmom,
My problem is I never know when I am going to have my seizure like episodes. So I try to do things and try to get out of the house with my hubby but then I worry when I start my episode it's very scary and people just stare at me like I have ten heads. I'm afraid to get out of the house more because of these stupid episodes. I do take baclofen which seems to help a bit. Anyone else dealing with these crazy episodes?
Thanks again
caren
 
Have you had an eeg study to rule out actual seizures? I do know I can get stiff as a board and locked up for short periods of time for two reasons. 1 is when I stretch 2 is when I get too cold. Most times when they happen, only my hubby or one of my kids knows I am going through it. It moves on and so do I. For the most part, you learn to not be self concious about those events. Like any disease, you learn to be humble and accept help when you need it and then like magic, once you sit in a pwc, you become invisible to most people anyway, with the exception of children, then you become a wonderment and your chair awesome chariot!
 
Thank you for your input. No I never had an eeg. I had the emg done with all the wires and the painful zapping. I get stiff also. I twitch like crazy my neuro saw this and he says it's cause of the muscle spasms. I also do the amazing foot stomp. I had to stop going to church because I would disrupt mass with my loud stomping. So this is crazy and I am trying to deal with this as best I can. The drs thought I was dying from ALS but thankfully they ruled that out. Thanks again.
 
have you had a muscle biopspy? There are some forms of muscular dystrophy that the symptoms involve siezures/stroke like episodes.
And if the church has a problem with your stomp you need to find a different church. I am sure no one minds the way you walk in church or out.
I was very self conscious at first with my cane but now I use it with pride and when the time comes that I have to use a wheel chair then I'll have my son paint flames on it. The gockers and nay sayers can go to the devil. You do what feels right for you , and that goes for all of us here.
 
"when the time comes that I have to use a wheel chair then I'll have my son paint flames on it. The gockers and nay sayers can go to the devil. You do what feels right for you , and that goes for all of us here."

Vicki, I love your attitude!
 
I gave up long time ago giving any care to what others may or may not think about me. Life has so much adventures to be had! Don't worry about others, let them deal with their own predujice (sp) and live life to your fullest! I go to church in a pwc. No one holds it against me. I have discovered that most people do not give you a second thought when you come in with your quirks and devices. If anything, I have found it quite the opposite, they hardly ever approach me. At times I feel invisible! But I learned to not take it personal, rather if I would like attention, I make sure that I wheel right up to them in their circles and make sure at appropriate times that I can speak and laugh with the best of them. PLS is what I make of it. Yes the symptoms are what they are for pretty much all of us, but the limitations can be overcome or worked around so you can live life to your fullest. Don't let your mind talk you into saying you cannot do something because you are afraid of what others think.
 
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