Old 08-25-2015, 01:29 PM #1 (permalink)
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Default Maybe this can help someone

Since diagnosis last year, my parents have had a lot of difficulty accepting the situation, which is understandable, and have often been quick to say no to things without understanding or explanation.

A month after his diagnosis, I told my father about DPS and how it might help him. I brought it up at the first clinic visit and while the doctor didn't promote it, he said he didn't discourage it if a patient wanted to investigate. The immediate response was No.

Today, nine months later, my heart broke when my brother told me that Hospice explained the options he has today. He asked about DPS and was told that the time had passed and it was too late. He also asked about breathing exercises which he never did when PT had recommended them. I can only imagine how desperate he must feel at this point and in searching for a different alternative.

I've tried explaining that many things associated with this disease are time bound and there is a point of no return for some, i.e., speech banking. Unfortunately, we have been behind on everything we have ever needed from a cough assist, to VA benefits, a power wheelchair and an accessible bath.

I'm hoping this can help others realize how important it is to take all the information available, do your home work, and be proactive and persistent. Ask for what you want and make sure you get what you need.

These were my parents decisions and I was unable to influence them differently but I can be ok with it knowing I tried and did what I could.
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Old 08-25-2015, 01:58 PM #2 (permalink)
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Default Re: Maybe this can help someone

Star, you've come a long way in accepting that you can only offer help, and that your parents are responsible for the consequences of their own decisions. You are doing a WONDERFUL job. You are right--if our experiences can serve as examples to others, then our efforts were not in vain.
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Old 08-25-2015, 02:27 PM #3 (permalink)
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Default Re: Maybe this can help someone

Thank you.

I wasn't there for the visit but it sounds like he's accepted getting help with bathing and taking anti-anxiety medication. I hope he'll be more comfortable in the upcoming weeks now that some of this is falling into place. By next week the bath remodel should be done. Looks like it's coming along good. I planned out the whole thing with help from you guys and Google.
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breathing, brother, clinic, cough assist, diagnosis, dps, father, heart, hospice, information, power, power wheelchair, speech, speech banking, va benefits, wanted, wheelchair, work


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