Curiouser and Curiouser...

[StayAtHomeDaughter]

It occurs to me that we don't actually know what helps, sometimes, because we don't know what we are keeping at bay with all these crazy ideas.

I know I want some miracle to fix this for my mom.

Nothing fixes it...but sometimes I think we have it fairly easy compared to many. My mom's first symptoms were over 8 years ago. The last year she has been completely non-verbal and on a liquid diet; her right hand is giving up. I massage with oils and waxes and vibration...will soon try a CBD patch on her wrist, but the momentum is definitely moving in the direction that is not healing.

We have done cryotherapy, acupuncture, yoga, vitamins, herbs, massage, oils, music and laughter. She can still drive, no cognitive decline and no falls...so maybe we are helping? During the low times, I remind myself that doing nothing certainly won't help...but it is intriguing to me that PERHAPS we are keeping bad things back.

Perhaps we are not.

[easterncedar]

I don't understand. She is nonverbal but has suffered no cognitive decline? She doesn't fall? She has PSP?

[StayAtHomeDaughter in reply to easterncedar]

She was originally diagnosed with ALS...with no strength loss whatsoever. Not ALS. At the Mayo Clinic they said Progressive Bulbar Palsy. She would not still be alive 8 years later if she had PBP.

Our neurologist explained to us that in the neurological community they are in the process of reclassifying PSP. My mom will end up with a derivative of it. The eye movement is specific to PSP...he cornered specialists at a neurological conference and showed them video of my mom. They all agreed it was PSP. Two other neurologists agreed as well.

It has been a long, confusing, discouraging journey. A dozen specialists in three different states do agree on one thing: There's nothing we can do.

[enjoysalud]

For what it's worth I think you are slowing down the "bad things" progression by having used acupuncture, vitamins, herbs, massages, music, laughter, etc. How brave of you for using (trying) those options.

Thank you for posting the photo.....a marvel heroine you are.

Los Angeles, CA, USA

[StayAtHomeDaughter in reply to enjoysalud]

That's my youngest daughter who has special needs.

[raincitygirl]

I agree with Margarita - given the slow progress of your mom's disease, you have every reason to have faith in how you're handling it. Good support for your mom - I'm sure your love and dedication also has a good effect

Happy New Year!

Anne G.

[Amth_1948]

You’re doing sterling job, the care, the love is all you can give. I like to know where & how I can get CBD patches for my wife?

[StayAtHomeDaughter in reply to Amth_1948]

My son sent me a link. I'll post it when I get home...and will order them today and keep you posted.

[Dadshelper]

Well it seems what you are doing definitely hasn't hurt so keep it up! Every patient is slightly different in their progression, there is no cookie cutter template for what will happen or even when it will happen. I'd re-think the driving ability if she is losing communication and arm use.

Ron

[Hidden]

I agree with Ron about the driving. I was lucky mom decided on her own when not to drive (hit her own garage)... but she kept her car & let her friends drive her around in it... (a system that worked for awhile)... Better safe than sorry.

Sounds like you have a good handle on aids for you mom. I do one have one question... where can l get myself a lovely patriotic outfit like the one in the photo?

Sending Hugs & Vertual Cut Out Flag Cookies... Granni B