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LizC99

Member
Joined
Mar 31, 2014
Messages
12
Reason
PALS
Diagnosis
07/2013
Country
US
State
CT
City
Danbury
I would like to share some of things I do to stay positive, Although my symptoms started January 2013, I was diagnosed in July with PBP and my symptoms are slurred, slow speech, difficulty swallowing especially liquids, uncontrollable laughing and crying at times and phlegm. I make a drink for the phlegm and it works so well. Fresh lemon, maple syrup and cayenne pepper (a very small amount) and mix it all with water.

My doctor has prescribed medications for anxiety and depression, and I take several vitamins. I go once a week to a massage and acupuncturist to relieve most of the stress which helps tremendously, and I try to walk everyday. I guess I do everything I can to stay positive. The most frustrating at this point is communication. I am blessed with a wonderful husband and two great kids and surrounded by supportive family and friends.
 
Hey Liz.....sorry you have what I have, a lot of your symptoms mirror mine. Especially your comment about communication being so frustrating for you, and also the emotional lability.
My speech issues have been difficult, but I am finally coming to the reality that....it is what it is....and it is only going to get worse!
Sounds like you have a good support group in your circle. If I had any suggestions for you it would be to talk to your doc about anti-depressants .....I was going through the same roller coaster emotionally. Now I am on amitriptyline and Prozac, and it has improved at least 50% over what it was. Nudexta is suppose to be really great, but is quite expensive and no generic availability.
One last thing...keep walking and exercising, for me it is imperative for my psychological well being. I feel it is helping in my battle, sort of a denial situation I suppose.
See you around!:wink:
 
>it is what it is

ditto that !
 
Thanks for replies. I do take Pristiq and when I need it Xanax. I also take Nuedexta, which has been a big help. You are both right "it is what it is". ��
 
> I make a drink for the phlegm and it works so well. Fresh lemon, maple syrup and cayenne pepper (a very small amount) and mix it all with water.

I think I would like to give this a try. can you detail the formula/quantities please?

Thanks,

Max
 
One freshly squeezed lemon, pure maple syrup (to taste), a dash of cayenne pepper and then add warm or cold water, I use cold about 18 oz.
 
Max,
I make it as I go. Sometimes I squeeze the lemons ahead of time and add about a 1/4 of a cup of lemon juice to each drink.
 
Hi, Liz -- thanks, I just skyped it to Sandy
 
I was watching the race yesterday and my mom asked who the number 14 is? I say Stewart, Tony Stewart. She says that the name is on the tip of her tongue, I say Tony Stewart! a few minutes later she said it's Tony Stewart! I just remembered! When will I give up, lol, my son found a talk and speak on my Iphone, going to give it a try.
 
Janie, don't feel too bad that happens to me all the time with my husband, except it is when I say something, and I don't have ALS. He has the best hearing aides on the market, but they don't work sitting in the drawer. He always is surprised when he sees the expression on my face after he repeats what I just said. It has actually gotten quite funny at times.

Paulette
 
I laugh about it, what else can I do? it really is what it is, that has been my answer whenever someone tells me how brave I am, what choise do we have, I'm not going out crying like a baby and making those around me miserable, might as well enjoy the time I have left, I have the uncontrollable laughing at times, I never cry thank God
 
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