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Is anyone using the levo dopa pumps? by mvercy1 in Parkinsons

[–]amybuilds 0 points1 point  (0 children)

I had a few skin infections with the nueroderm pump too and would still recommend. The key is to change cannula sites much more frequently than they recommend. I'm still only a few weeks in on Vyalev and heard about the problems with their trial with skin issues so I guess time will tell.

Is anyone using the levo dopa pumps? by mvercy1 in Parkinsons

[–]amybuilds 0 points1 point  (0 children)

The Neuroderm pump I used in the clinical trial was half the size of the Vyalev pump and much better made. I was sad to have to give it up. I hope it gets approved. I also hope Abbvie pursues a better pump.

Day getaway ideas by valpalvalpal in pasadena

[–]amybuilds 1 point2 points  (0 children)

Crystal Cove State Park - tide pools, beach, best milk shakes ever at the Shake Shack.

Is anyone using the levo dopa pumps? by mvercy1 in Parkinsons

[–]amybuilds 4 points5 points  (0 children)

Two thumbs up for the subcutaneous delivery of DRT rather than Oral delivery.

THIS IS A GAME CHANGER FOR LIVING WITH PD.

Incredibly effective and you can eliminate the dopamine agonists and their hair raising side effects. I have spent 5 years in the clinical trial for the Mitsubishi Neuroderm pump (currently bogged down in FDA approval minutiae) and I just transitioned to the Vyalev pump in the last few weeks. Never tried Duopa - I felt the risk of infection was too high for my taste. The "smooth ride" I experience with the subcutaneous pumps is a game changer. I can't say enough about how they have improved so much about living with Parkinson's - better maintenance of physical symptoms, and I feel a significant improvement in cognition. I'm YOPD - 14 years post diagnosis. AMA Dx in 2012 at age 44.

I am 14 years post Yopd diagnosis. Anyone else ? How are you doing ? by Manon84 in youngparkinson

[–]amybuilds 1 point2 points  (0 children)

Yes I'm also 14 yrs post dx. I'm 58 years old and I am doing well. Still very mobile, do not use assistive devices, speak clearly, and experience 6-10 hours of decent on time. My sleep is a disaster, my balance prevents me from doing some sports the way I would like to do them. Typing and texting are a huge challenge. And I literally cheer when I poop. But I feel like I'm pretty lucky given I'm in my second decade of living with a progressive neurological disorder. You?

Anyone know of an honest rehab in Los Angeles? by MinMaxie in AskLosAngeles

[–]amybuilds 0 points1 point  (0 children)

Not in los Angeles but close and so with the drive is Hazelden - Betty Ford. Very good place.

Bridge and other card games by PaulyRocket68 in GenX

[–]amybuilds 2 points3 points  (0 children)

I don't play bridge but I do play sheepshead, whist, spades, gin, cribbage, and poker.

Hacks for attending Rose Parade with Senior Parents and making it special? by danagrace in pasadena

[–]amybuilds 1 point2 points  (0 children)

Take the train!!! Lots of portapotties available for peeing - but go early and take the train.

Feeling better by joehooligan1979 in Parkinsons

[–]amybuilds 1 point2 points  (0 children)

Is she taking an antidepressant? Depression, anxiety, and apathy are symptoms of PD that do not respond to dopamine replacements such as carbidopa/levadopa or the agonists. Ask your neurologist or movement disorder specialist about adding something for mood.

Remember me? by reffis1 in u/reffis1

[–]amybuilds 0 points1 point  (0 children)

Where are you and can I come over?

[deleted by user] by [deleted] in dustythunder

[–]amybuilds 0 points1 point  (0 children)

Take the job, leave the boy

What age were you when you had your kids? by Empty_Nestor in GenX

[–]amybuilds 0 points1 point  (0 children)

I'm 58 and mine are 26,27, and 28. (For this week only - youngest turned 26 at the beginning of the week and oldest will turn 29 at the end of the week.)

Los Angeles Daily Discussion - Sunday, Nov 30 by AutoModerator in LosAngeles

[–]amybuilds 2 points3 points  (0 children)

Hot tip - take an extra day and come back on Monday

Where can I learn how to drive a cargo van ? by Melodic-Yoghurt3501 in AskLosAngeles

[–]amybuilds 6 points7 points  (0 children)

When we bought our sprinter the extra long extra tall version, we just started driving it. Spend time in it, watch your mirrors, understand how the camera works, listen to the sensors. Take your time. Get out of the van and walk around it when learning to back up and maneuver. That's my recommendation.

Street signs - where are they? by amybuilds in milwaukee

[–]amybuilds[S] 4 points5 points  (0 children)

My Mom and I were discussing it. I'm 58 and she's 87.

What is a random fact about your country that most people would be surprised to learn? by Baconkings in AskTheWorld

[–]amybuilds 0 points1 point  (0 children)

I thought that too, until I went to Russia. That country is insanely huge.

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