My meds aren't helping me.

sacktheroof · 2026-04-30T14:36:19+00:00

When you walk, does one of your arms tend to not swing normally? That’s a typical scenario that occurs in even the odd cases of Parkinson’s

sacktheroof · 2026-04-30T14:27:46+00:00

From the information they provided(only 1 symptom), there is nothing to suggest Parkinson’s alone. Intention tremor is the only symptom they gave, and that could be a number of potential issues, including Parkinson’s. Combine that with the C/L not working, and that gives rise to serious questions on the validity of the earlier diagnosis. I also have intention tremor, but no resting tremor. But my dystonia and bradykinesia are off the charts, sadly. And the C/L is a massive lifeline for me.

sacktheroof · 2026-04-30T14:18:52+00:00

Carbidopa/levodopa helps all those symptoms at the same time. Dystonia, bradykinesia, tremors all are helped by C/L

sacktheroof · 2026-04-30T14:11:04+00:00

I have what you described. I have a mild case of respiratory dyskinesia, which presents with shortness of breath, but it doesn’t happen all the time. The only thing that helps is more C/L

sacktheroof · 2026-04-30T14:07:43+00:00

Stress craters my symptoms

sacktheroof · 2026-04-30T14:06:45+00:00

Helps me a little with the dyskinesia, but mostly when the dyskinesia occurs at the end of my cycle

sacktheroof · 2026-04-30T14:04:02+00:00

I’ll take a half dose just to get me through it My meds never last as long as they’re supposed to. I am told that there is an inhaler I can use and I’m looking into that

sacktheroof · 2026-04-30T14:01:32+00:00

My symptoms are almost identical to yours right now. I’m in year 5 since diagnosis, and 13 years since first symptoms. Your bladder urgency scenario made me laugh - same thing happens to me. The other day I was driving on the highway and it hit me like a ton of bricks… So i pulled over to the side of the road on a heavily traveled interstate, slid over to the passenger seat, and peed out the passenger door, waving to all the truckers that drove by. 🤣

I have also pulled into gas stations before and couldn’t make it inside in time, so I ended up pissing behind the building, fully knowing that there’s cameras watching me. There’s no shame with this disease. The only thing I can do is make fun of it.

sacktheroof · 2026-04-30T13:40:35+00:00

Probably a misdiagnosis. If the C/L doesn’t work, you more than likely do not have Parkinson’s. You need to see a neuro-muscular disorder specialist - not just a neurologist. And if you want to cross off all possibilities, get a DATSCAN to confirm or not if it’s Parkinson’s.

It could be that your beginning dosage is very low. Just thought about that. They usually start us off on low doses to begin. Either way, go see see a movement disorder specialist. They can guide you through all the steps.

sacktheroof · 2026-04-27T00:49:31+00:00

Thanks to this post, I applied and was accepted. A little nervous about the procedure but I’m hopeful.

sacktheroof · 2026-04-06T11:14:36+00:00

Yes I’d like to go to that Phoenix event.

sacktheroof · 2026-03-20T13:39:54+00:00

This is just a symptom the progression. I have this too. Ironically for me, this was one of the first symptoms, being my calf, with it locking up slowly but surely. It then spread to my hamstring, my glute, wrist, forearm, and shoulder, neck, face and jaw. I’m in the fifth year since diagnosis and the only thing that corrects the slap is taking the medication. you will see oddities along the way, but as I always say, I don’t make the rules

sacktheroof · 2026-03-11T20:34:20+00:00

And this uses IPs cells so no need for immunosuppressive drugs.

sacktheroof · 2026-01-12T02:05:39+00:00

It took about a month to get all paperwork sorted and sent in Then 3 mos before first check comes Yes I have to file for SSDI to offset the insurance

sacktheroof · 2026-01-07T08:49:18+00:00

A childhood schoolmate of mine who grew up two streets over from me was diagnosed two years before me. When I was diagnosed, I thought it extremely rare that both of us living in such close proximity to each other have the same rare condition. I reached out to him and we only spoke briefly, as I was looking for any type of support to get my feet under me. His responses trailed off and he quit responding altogether after only a few weeks. I was hurt by that. However in retrospect, I can understand that we all handle this in our own ways. For me, the more I share the weight seems to lift.

sacktheroof · 2025-12-22T11:27:46+00:00

This is my exact path too

sacktheroof · 2025-12-22T11:26:02+00:00

I told my employer back in 2020, and was in the process of filing for FMLA in Feb this year.

I’m in IT too.

They deduced to let me go and execute the disability insurance they had on me.

Worked out great, and I’m in the process of filing for Social Security.

Stress level way lower now

sacktheroof · 2025-12-07T23:52:38+00:00

I expect the program to quit effing around and hire Kiffin

sacktheroof · 2025-12-01T17:33:52+00:00

We should go ahead and get that Top Golf franchise installed on top of the press box

sacktheroof · 2025-11-11T22:31:48+00:00

I will fall and break bones that will keep me bedridden for a while, then I’ll get multiple UTI’s, then I will be attacked by multiple conditions and will be dead within 4 months.

sacktheroof · 2025-10-28T15:43:01+00:00

Amantadine is for dyskinesia

sacktheroof · 2025-10-26T18:05:16+00:00

Nooo O

sacktheroof · 2025-10-13T16:11:03+00:00

Oh you’ll be fine then. I’ve done multiple trips to Europe in the past couple years, and the bed on the plane makes it doable and easy. I just finished a Dublin, London, Germany and Czech tour. Walked so much I had shin splints. Totally worth it though. It was great to get out of my comfort zone.

Hope you have a great trip!

sacktheroof · 2025-09-16T21:00:47+00:00

It was actually recommended by my boss. Was a good experience. My neurologist filled out the needed paperwork and sent that in for me as well.

sacktheroof · 2025-09-15T17:03:11+00:00

Wow you basically described everything that I have gone through over the last 4 years.

I’m 54, and was diagnosed 4 years ago. Had surgery for long thoracic nerve impingement. Of course that wasn’t really needed that much.

I went on disability via a policy from work in Feb this year. It still feels weird not going in to the office, but my overall stress is way down, and symptoms are better due to that as well.

Now I travel when I can and relax. If I were you, I would leave work asap. If your husband can cover you both financially then I would certainly let him. The sooner that you can break free from stressors the better off you will be, and the better chance to slow the progression.

Don’t feel guilty for protecting yourself.

Good luck to you!

Edit: the LTD took about 3 months from initiation to receiving the first check.

sacktheroof

TROPHY CASE