Is crying a characteristic of PBP?

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Idaho2790

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I was recently diagnosed with PBP while at UCSF. I have always considered myself a strong woman and I’m trying to continue to be mentally strong in spite of what is coming in my life. I find myself crying at silly things. If someone sends a card or text offering support, if they send flowers, even if a child sings the national anthem! It’s difficult to stop this emotional roller coaster! Is this normal? Or is there a drug that can control my emotions so my family can continue to count on my strength?
 

lgelb

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Nuedexta is a drug that helps to control emotional lability, including "inappropriate" laughing/crying. I am not sure if you really have that, or are "just" depressed in re your diagnosis, which is completely normal. It can have significant side effects, so you might want to wait to see if your symptoms improve/change before broaching it with your doc.

Best,
Laurie
 

Atsugi

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I've read that "Labile affect" is one possibility with Progressive Bulbar Palsy. I'm not an expert, but that's what I read. Ask your doc if an anti-depressant or a mood stabilizer might be appropriate--I don't know.

Now, I am the manliest man of all men. But I cry at every movie. All of them, even comedies. All my life. Whenever someone does something noble or good or courageous, it gets to me whether I want it to or not.

Are you sure it's a bad thing? My kids understand it and ignore it. They continue to believe I'm a strong dude. (I encourage that delusion.)
 

Idaho2790

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A thank you to you both! It is possible that my diagnosis will change to IBP after six months or so based on an Emg that was clean except for the tongue muscle. I’m really feeling surprisingly optimistic at least as far as I can tell, lol. This is just such a complicated illness and from what I read and learn, things can change at the drop of a hat! Since there isn’t anything I can really do to change what is happening, I’m determined to live my life the best I can. This is hard to do when I cry over such little things. I see the clinic at UCSF again th first week n April. I guess I will give it a little bit before I approach th doc again!
 

Livealot

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It is for my husband , the doctor gave us a prescription that has really helped, it's Nuedexta.He takes it twice a day.No more crying and being unable to stop.We use the VA hospital and they always tell the patients thanks for your service, he does tear up.It's strange how kindness can bring you to your knees. Idaho , he has spent the last 3 days doing yard work , he just can't speak , are take much food in.A very strange form of PBP .All the best to you
 

Idaho2790

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Dear Livealot, thanks for your reply. I find that your husbands problems are similar to mine . Think I will ask the clinic about that drug if I don’t learn to control my emotions on my own. I just hate to be dependent on anything more, but this is frustrating since it just isn’t my personality, or at least never used to be, lol!
 

Livealot

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His either , and he had no control over it. I think not being able to express himself make's it worst.When you get the diagnose it's overwhelming ,I know it must be for you too. I hope you get the meds soon.Good luck. Dee
 

Romeosc

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Doctor prescribed Nuedexta for me after diagnosed with ALS and I cried every time my wife cried, but I quit taking as reality set in and I was in better control. I still feel like I am going to cry, but can control it better now!
 

Idaho2790

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I cry and then make my husband cry! I’m hoping that as things settle in and we know more and learn how to cope with some of these things, like you, I wouldn’t need the meds. For the most part, we are looking at the positive things we can do and are trying to plan for the future. Still feel like we are on a carpet that can get pulled out from under us at any time. Our biggest issue, truly, is that we married at 18 which was 54 years ago. We are still joined at the hip and still in love. We both worry about what will happen when this twosome ends. Hard to talk about for sure!
 

Livealot

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You nailed the emotions perfectly. We have been marred 51 years , I relive the good memories daily.Wish I could give you a big hug, and your husband.
 

Idaho2790

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Thanks, Dee. I’m sure based on the statistics of when this starts, etc, there are many of us in this position. Almost four years ago my husband was diagnosed with esophageal cancer and had his esophagus removed at UCSF. We thought our lives were over then, but no chemo, radiation, and he is still plugging along. At that time, I prayed for five more years...we had just celebrated our 50th. Who would have thought that the shoe ended up on the other foot and here we are again. We are determined to not waste whatever we have left. Going to travel a little and enjoy the kids, grandkids, and great grandkids! Will pray for a similar life for you!
 

Livehard

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Thank you all for posting. Very helpful to read about some folks with this diagnosis who seem to be sinking their teeth into the time they have. My mom just got diagnosed with PBP - my heart is breaking but I don’t want my grief to get in they way of showing up and helping her do what ever is left on her bucket list. I think I need some Neudexta! Know that I will be looking for your post and wishing you full days ahead!
 

KimT

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Livehard,

Your mom is blessed to have you on her team. It's okay to cry and even therapeutic. I always feel better after a good cry or a good laugh.
 
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