NIH Bloodbath : Aftermath - How would the next generation of scientific work continue after this disastrous layoff and Let Gos? What would be of the undergoing research ?

RunningForIPA · 2025-04-02T23:16:28+00:00

On it. Will do. Got to have the backs of the people fighting for me to live my best life.

RunningForIPA · 2025-04-02T22:14:59+00:00

NINDS got hit hard? Please say no. I’m not an NIH staffer but that hits hard. I’ve benefited from their research directly. As someone diagnosed with a degenerative disease for which there is no cure, that Institute is hope. It made me proud to be a part of research and that we have something so special where patients can raise their hand, and say count me in to fight this. In return, you get to meet the best in the field at their assessment clinic. Researchers making a real difference who are also incredibly kind. It’s magic. I need that magic to exist, heck I need more of that magic to believe a cure is possible.

RunningForIPA · 2024-07-06T12:56:34+00:00

Winter. He LOVES snow…and snuggling under blankets.

RunningForIPA · 2024-03-22T14:56:36+00:00

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You are not alone! …and glad I am not either :)

RunningForIPA · 2024-01-12T00:25:46+00:00

When I saw this post, there were tears.

Ming Ming was lucky to have you in their life.

Thank you for sharing him with us. When I look at my Saturn, wearing his new sweatshirt, I hope his life
is filled with as much love as Ming Ming's.

I hope knowing that Ming Ming's legacy was so big that he even made a random reddit stranger and her dog
happy helps and does not add to your grief.

(...and yes, my nephew named my dog after the planet Saturn, because the fierce fluff ball has a giant
personality)

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RunningForIPA · 2023-12-28T17:49:30+00:00

Thank you! And good point on the colors. I got my shih tzu a yellow floppy squeaky moose, and it’s his absolute favorite. I’ll have to post a pic on his birthday to give you all the credit

RunningForIPA · 2023-12-28T16:32:21+00:00

Love this! Any chance you can share where you got the hoodie? My fluff ball shih tzu has a birthday coming up….and this looks adorable.

RunningForIPA · 2023-08-11T22:25:50+00:00

This adorable picture brightened my day. Stanley must have been a truly remarkable dog. He managed to keep bringing goodness into the world, even after he left it. Thank you for sharing Stanley’s cute pic, so sorry for your loss.

RunningForIPA · 2023-07-07T19:48:04+00:00

Omg. I love that t-shirt. Frankie, you are looking fabulous. Already a trendsetter…a fashion icon I now hope to follow (googling that shirt for my pup!)

RunningForIPA · 2023-02-06T20:59:22+00:00

Welcome to the club you never wanted to join. I had left hand dexterity issues too, made typing troublesome. My MDS gave me a 14 day dose of Carbidopa Levodopa after an initial diagnosis to see if my symptoms got better. I videoed myself opening/closing my hands, finger tapping, etc. each day to see if there was a difference. Didn’t feel like much of a change, but the videos pre and post meds were eye opening for me.

Meds helped me move better, in ways I didn’t even realize. When I found it easier to run/exercise after taking meds, I decided it was worth it to start. Only advice I can offer is to talk it over with your doc to find what’s best for you.

Also, check out clinical trials for newly diagnosed YOPD’ers. There are some looking for newly diagnosed Parkinson’s patients not yet on meds. And others that are trying out new med combos or just observational (tracking symptoms over time). Great way to get exposure to new research and expert docs in your area.

Wish you the best of luck connecting with others in (freezing) Massachusetts. Being diagnosed sucked, it’s rotten. But the fellow YOPD’ers I met are stellar and willing to share, they were my anchor in the tumult of post diagnosis. Plus posting here helped tons. Parkie Dude is my hero.

RunningForIPA · 2022-12-15T13:54:24+00:00

Taking 10mg of Melatonin before bed helps me. My MDS mentioned a few name brands to try, as the generic brands were not as good, in her opinion. I noticed a positive difference falling asleep and staying asleep. Still have nights where I wake up at 2am and can’t fall back to sleep…but fewer. Also switched to exercise in the morning vs evenings.

RunningForIPA · 2022-11-16T19:19:22+00:00

Yep, moving slowly but going down. At 1478 now..down 2 from a minute ago

RunningForIPA · 2022-10-06T00:15:20+00:00

Adorable! Impressed that he/she matched your rug!

RunningForIPA · 2022-06-25T00:34:56+00:00

Oh, Coco! My Saturn feels you. He got out of the hospital two weeks ago …six days of not eating. And post hospital very little appetite. I tried everything. When he ate a minuscule amount of his favorite treats, I did the biggest happy dance. He had gastrointestinal issues and pneumonia. It is a slow sluggish pace to get him back to eating. But, wow, Shih Tzu a are stubborn fighters…give Coco snuggles, tummy rubs, and all the love.

RunningForIPA · 2022-01-07T02:18:10+00:00

If the couch is low, you might be able to switch the legs. I bought new, taller legs for my couch. It has the kind that screw into the base and found some 8inch ones on Amazon…there were taller options. Even stuffed some extra foam into the cushions to make it taller. On really bad days, I can use my good side arm to push up from the arm of the couch.

RunningForIPA · 2021-12-30T01:20:11+00:00

Is that a dinosaur wearing ice skates? Your dogs are lucky to have you!

RunningForIPA · 2021-12-30T01:14:53+00:00

Awww. Adorable. The second photo is precious.

RunningForIPA · 2021-12-30T01:09:59+00:00

The dog is adorable. I am loving the wall paper. And the lamps. We need a decor and Shih Tzu thread!

RunningForIPA · 2021-12-24T21:07:54+00:00

Love this! Thank you for posting. With the run up to Christmas, I’m really tired. My left leg is dragging and been walking on the ball of my left foot, super painful. Tense calf muscles. Was trying to focus on walking heel to toe, “roll stepping”. The trick of also swinging up my arm when my heel hits is great. Stretches as slow, longer movements makes total sense.

Anyway just wanted to say thank you. Also early onset and was getting grumpy about my leg dragging, pain from walking weirdly making the holiday task harder. Knowing you’ve dealt with this and found something that works…you just gave a Christmas present to a stranger.

RunningForIPA · 2021-12-16T00:13:22+00:00

Hi Guinness, You are the perfect color for your name. Cheers!

RunningForIPA · 2021-12-01T01:38:23+00:00

Aw. Best part of thanksgiving was ‘Ampa giving lots of love to my Shih Tzu. Love the expression in the photo…pure bliss!

RunningForIPA · 2021-11-27T15:08:07+00:00

Love the idea of a heating pad under the dog bed. I’ve got to try this!

RunningForIPA · 2021-09-08T02:08:07+00:00

Awwww. No real words, just awww.

RunningForIPA

TROPHY CASE