Status
Not open for further replies.

Firat

New member
Joined
Jun 15, 2017
Messages
4
Reason
Loved one DX
Diagnosis
01/2015
Country
TR
State
Turkey
City
İstanbul
Hello. I am new here. Ah by the way ı do not know whether this kind of post has been posted or not. Forgive me.
My mother was diagnosed with Als 1.5 years ago.
We have a big problem. A problem that my mother cries constantly with a different tone in her voice. By the way this disease affects her brain symptons as well. She is not a normal person i mean.
She can speak only few words. But the problem is that let alone sleeping she constantly cries. Is there any suggestion that you have? Thank you a great deal in advance. Regards...
 
Search the site for nuedexta. It helps with emotional lability. Als sufferers tend to laugh or cry inappropriately. Also FTD affects about 40% of pals.
 
I record my thanks to you notBrad. One more thing she cannot control her brain symptoms. I mean that she is not a normal person any longer as well. She cries. Yet all the same; in a way that one can think that she just gets hurted by something. She does not sleep 5 hours as well in a day. Some say that this disease does not affect brain symptoms. But it does , doesn't it?
 
Very often it does, Firat. I am sorry.

As Brad says, Nuedexta may help. If it is not available in Turkey, you can see the two ingredients of it and have it compounded there or use the equivalent ingredients separately, which are available.

How is your mother's eating and breathing? If her breathing is not good, does she have a BiPAP machine? When it is hard to breathe, it can be hard to think and sleep. And of course the same is true if someone is not getting enough to eat or drink, for which we can use a feeding tube.

Best,
Laurie
 
Ah igelp i really appericiate it. Thank you for having replied. �� Oh Nuedexta , i opine, is not avaible in Turkey. I have done some research as to it and i have a hunch that it cannot help us. Perhaps it will we may purchase it in USA. Thank you very much indeed for advise. ��When it comes to eating and breathing i may assert that it is not good enough inasmuch as she does not use feeding tube. The reason that she cannot use it is that we have a fear that she shall not want it. I mean she cannot think like a grown person. She is acting like a newborn baby. Cannot speak as well. I do not know how to explain the situation. She no longer uses her brain to assert. That is why we think that she will not accep that machine. On the other hand she has so much difficulty in swallowing as well. We can provide her with BIPAP machine. However , all the same; the same goes for this sitiuation too. She will remove that machine as well. We just are to tie her hands. Thanks a lot again. Regards ��
 
I thank you so much GregK. It really gave me a different insight.
 
Firat, Think back to before your mom was diagnosed. What would she have wanted? Would she want to be comfortable and no intervention....would she have wanted everything possible done to keep her alive? I would use those answers to help guide you in your decisions for your mom.

As Laurie said, breathing struggles can make sleep difficult. So can anxiety. You might wish to speak with her doctor about medicine to help with anxiety. My husband took this and it helped him sleep because he could relax.

If your mom is struggling to swallow, is she choking when she eats? Have you tried smoothies/milkshakes? They do not need to be dairy based. Pureeing food might help. If she cant swallow, a feeding tube may be your only option for fluids and nutrition. Again, consider what your mom may have wanted pre als
 
Status
Not open for further replies.
Back
Top