Back after a long time

[mymomhaspd]

Hi everyone,

I haven't posted in quite some time, but I'm back because I need input from all the wonderful people on this platform.

More than five years ago, my mom had a fall and was put on hospice care. They gave up on us too quickly, and she ended up with an NG tube down her throat for months. Despite having Parkinson's, she could eat, swallow, and talk before this. Unfortunately, the aftermath of these events has been devastating: while her fracture healed, she lost her ability to talk and swallow- after effect of the NG tube /

Over the years, I've tried everything to help her, from supplements like NAC, Acetyl Carnitine, Alpha Lipoic Acid, and Vitamin B1 therapy. She seemed to be doing better with all these, but then we needed to take care of her teeth. The dentist suggested general anesthesia to remove multiple teeth, and I was shocked to learn they took out six teeth. This procedure significantly affected her baseline for responding and eating ( she had finally started eating a little, though the bulk of the nutrition goes through the G-tube)

I want to restart Mucuna, but given that she can get dyskinesia even with a quarter tablet of Sinemet (25/100), I don't know how to incorporate it safely. How should I do this? What else can I do? I feel really helpless at times.

This has been my journey and my battle through hell. Any advice or support would be greatly appreciated.

Thank you,

jo

[gomelgo]

mucunaparkinson.com/

[PalmSprings]

Hi, thank you for your post. I feel like you have opened my eyes again to watching out for the so called experts or professionals. For me I take your post as a cautionary tale for all of us. I truly feel for you and your mom. She now can’t speak for herself, you can’t read her mind or feel what she feels. But I do know for sure that she appreciates you undoubtedly for your care and loving concern. I would try Mucuna and see if you think it is helping her. Trust yourself, your heart is in the right place for that I am certain. Take care and I hope your mom feels better!

[mymomhaspd in reply to PalmSprings]

Thank u so much for ur kind words

[mymomhaspd in reply to mymomhaspd]

You have to fight for a loved one - otherwise God help you

[pdpatient]

mymomhaspd . I would refrain from introducing another variable into the mix. Mucuna is Levodopa after all, but you have even less control than before. You see, there is so much out there in terms of brands, dosages and strengths that it is impossible to determine the right dosage.

I agree with Hidden Simple food, relaxed environment and some exercise is the best way to go, along with doctor supervision.

As for your mom's communication, have you thought about using an iPhone or an iPad or something similar in Android perhaps, with a text to voice app?

I wish you and your family and your mom the very best outcomes with whatever you choose to do and I will pray for you. I echo the sentiments of PalmSprings and applaud you for taking such good care of your mom with empathy, kindness and concern.

[mymomhaspd]

Thank you - much appreciated. Empathy is so important - how would i like to be treated when I am in those shoes .. but most ppl just dont get it