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BetsyB

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PALS
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04/2016
Country
IL
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AA
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hadarom, israel
hello all,
i have limb onset that has now progressed to where even a little walking is very tough. my voice is weakening and i am laughing and crying too much. i take herbal medicine for the crying. i also see a therapist once a week and am making a great effort at self-caring and fun projects. my family is also accessing mental health care. i have an excellent filipina caregiver 24/6. i am receiving a full measure of govt benefits.

despite all of this, i am frequently distraught from frustrations with my decaying motor abilities or when i fail to effectively communicate my needs. my caregiver says 'don't cry.' one of my kids, age 13, says 'shut up,' and another kid, age 21, becomes exasperated and walks off in a huff, demanding i be compltely calm before he will help me. i try with all my might to stay calm, but often can't.

the pressure on me is intense. it seems unfair. what do u think, PALS and CALS? is it fair? what solutions can u suggest. maybe mellow with some cannabis...legal here...but then must stop working....
aside from anti-depressants, as i am very clearly not depressed, what can u suggest.
 

Duker52

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Joined
May 22, 2016
Messages
119
Reason
PALS
Diagnosis
04/2016
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US
State
Virginia
City
Alexandria
Betsy, I'm so sorry your children aren't a little more understanding. It is frustrating when I speak and my spouse can't understand me. To help, I downloaded a text-to-speech app on both my iPad and iPhone and it works beautifully. As for your crying and laughing, I take a drug called Nuedexta which is developed to help with those pseudo bulbar affects. I take it not for that reason, but because it really helps with swallowing issues. Suggest you mention this to your physician and see if you can get a script for it. Bill
 

GregK

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11/2012
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Colorado Springs
Ditto on the Neudexta.

Your laughing/crying is called psuedobulbar affect, PBA.
 

ShiftKicker

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Mar 16, 2015
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DX UMND/PLS
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06/2015
Country
CA
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BC
City
Vancouver
It's a knee jerk response from others when they feel unable to control a situation, or are uncomfortable. The onus is placed on you, the person afflicted, to control something you are unable to change. I am sorry you are struggling with this. It's THEIR problem, not yours.
Greg and Bill are right- It sounds like PBA. I hope you will find some relief. Cannabis is a good start! But your treating physician will have some options for you as well. If Neudexta is not available where you are, a compounding pharmacy can make it up for you.

Best wishes-

Fiona
 

Nuts

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Feb 23, 2014
Messages
2,534
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Lost a loved one
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01/2014
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Please try the Neudexta to control the crying, if PBA is the problem.

I am so sorry that your children are so intolerant. It is painful to see their parent go through this and their attitude may be defensive, but it's thoughtless and selfish. It might help them to realize that your laughing and crying is a product of the disease and not something you can control. Let them know that you are seeking meds to control it.

Is there another adult family member who can talk to them about how their behavior affects you? And/or be sure the mental health professionals your family is seeing know this is going on.

Becky
 

KimT

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Messages
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08/2015
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The Beach
Betsy,
I'm so sorry your children are handling their fear and grief in an unhealthy way. I think trying weed is probably a good thing. I'm glad it's legal there. Do you have access to Nudexta over there? I cry a lot, too, but I think mine is more situational and feeling sorry for myself.
 

Atsugi

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12/2010
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Wow. I'm stunned. PALS must be calm? No. PALS can be any way they are. I hope you and your family and doctors can work this out to benefit you properly.
 

BetsyB

Active member
Joined
Apr 6, 2016
Messages
96
Reason
PALS
Diagnosis
04/2016
Country
IL
State
AA
City
hadarom, israel
thanx all for your comments. i know all about PBA, i have explained it to kids and mental health pros. if i could get a clinic appt i would ask about neuudexta. clinic is unresponsive, will have to try harder to get their attention.
 

gooseberry

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Jul 2, 2014
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3,457
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5/2014
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Betsy, who is helping you? Who is advocating for you? They could make the calls, and do those paperwork type things. Clinics sometimes have a pt. setup so you can email the doctor. I would ask if you ever hear from them.
 

BetsyB

Active member
Joined
Apr 6, 2016
Messages
96
Reason
PALS
Diagnosis
04/2016
Country
IL
State
AA
City
hadarom, israel
gooseberry, i have been doing most of my own work and self-advocacy while i still can. both ALS clinics here, and my family doctor, operate by email. but it does not mean i can actually land a clinic appt without a great deal of pestering. i will soon need to pay a helper unless i get into better communication tech.
betsy
 

Dave K

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We have experienced this in our family, and I have heard plenty of other ALS families report the same thing. The bottom line is it's unrealistic to expect PALS and CALS to always remain calm and to never get frustrated with each other. Frustration and anger arise naturally from (1) being exhausted and (2) being unable to control the situation. I think it helps just to recognize the anger and frustration when it occurs and accept that it is normal. Dealing with it is easier for adults than it is for teens and tweens, so it would be great if the kids could find a support group of young people. Young caregivers also need more breaks than adult caregivers. Nothing they have learned in school has prepared them for this level of work.
 

faithandlove

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Joined
May 22, 2016
Messages
174
Reason
PALS
Diagnosis
06/2016
Country
US
State
NV
City
Reno
Betsy, I'm so sorry your children aren't a little more understanding. It is frustrating when I speak and my spouse can't understand me. To help, I downloaded a text-to-speech app on both my iPad and iPhone and it works beautifully. As for your crying and laughing, I take a drug called Nuedexta which is developed to help with those pseudo bulbar affects. I take it not for that reason, but because it really helps with swallowing issues. Suggest you mention this to your physician and see if you can get a script for it. Bill
Bill,
What is the name of the app you used on your iPad and IPhone?

Deb
 

Duker52

Distinguished member
Joined
May 22, 2016
Messages
119
Reason
PALS
Diagnosis
04/2016
Country
US
State
Virginia
City
Alexandria
Deb,

It's called Text to Speech - Voice Synth. It's free and of the free ones I've tried, I like it the best.

Bill
 
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