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Notme: I couldn't agree more with your statement:
"The medical community is very uneducated at large about ALS, as are the people that work in govt. offices."

I'm finding it very difficult to find nursing assistants that have any experience with ALS. Now we have to pay triple the amount to get skilled medical professionals such as, LPNs and RNs. Sure the VA compensates him for his disability but its not nearly enough to pay for all the expenses. My father worked hard his whole life to create a comfortable nest egg and now he has to go through his life savings to get the proper care he deserves. I feel fortunate that he has the monetary means but what about those pALS that don't?

I feel bitter sweet about the VA. On one hand, they provide us with most the equipment we need but, on the other hand, if my father didn't serve in the military, would he have ALS? As many of you may know, those that served in the military are twice as likely to get ALS.

Another issue I have with the VA is while they're great at supplying much of the needed equipment, unfortunately, the reps that drop off the equipment don't know how to use them nor customize the settings. When the cough assist rep came by, she had the setting so high that my dad's eardrums almost burst. So now we have an apartment full of expensive pulmonary equipment that is collecting dust.

I'm fortunate enough to have the time and resources to advocate for my father which is a full-time job with no pay but, it isn't easy to do when I have two young children and a husband depending on me as well. Also, sometimes I feel as though I'm not qualified to know all that my father needs, so it seems like I'm always in reactive mode.

Then I always wonder, what about those pALS that don't have friends/family that can advocate for them? How do they do it? These thoughts keep me up all night.

I could go on and on but the question is - How can we educate these medical professionals to provide the proper care that pALS desperately need and deserve?!

Team Dom
 
I have to agree with the assistance with caregivers. I am a ft caregiver to my mil and have two children ages eleven and thirteen. I have been to every appointment with my mil. There seems to be alot of help and support for her needs but none for the caregivers and family. I have decided to start a non profit organization that will help caregivers by providing them a chance for date night or family fun activites while providing a nurse to care for the affected. This will begin once my caregiving is no longer needed.
 
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