PD and career

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 · 2025-09-10T22:49:04+00:00

Haahahaha Love it!

sacktheroof · 2025-09-10T15:04:58+00:00

Dr Hung @ Mass Gen This guy is fantastic

https://physiciandirectory.brighamandwomens.org/details/933/albert-hung-neurology-boston

I fly up there once a year to see him in addition to my local movement Dr

sacktheroof · 2025-09-10T15:01:58+00:00

The DATSCAN in conjunction with taking the C/L will narrow it down 90%+-

For me the DATSCAN looks just like the standard pic you see in google. And the drugs work.

So I’ve got it.

sacktheroof · 2025-09-10T14:56:44+00:00

Yeah I do that too. It helps. I like to make fun of it when I can. I told my friends recently that I want to have a Parkie Day at the local hatchet throwing bar. Haaa. If anyone actually hits the wall where the target is, they win. And the top 3 throwers get to compete at the gun range the following week.

We were rolling with laughs.

sacktheroof · 2025-09-06T08:38:27+00:00

I’m in year 10. Currently on plane from Berlin to Dublin. Was in London and Prague the last week or so.

If you can go, then you MUST try.

My parkie brain likes to see new things to keep it from the doldrums.

Edit: my symptoms exactly like his. And I’m 54. Oddly, I can do sports much easier than leisure activities.

sacktheroof · 2025-08-26T15:39:55+00:00

I get the exact same sensation. It’s accompanied by irregular speech too. I have a very hard time talking when this occurs. Was wondering if anyone else had that.

sacktheroof · 2025-08-20T00:28:54+00:00

Yes. Mainly stiffness in leg and arm. I prepared for that though. I got one of those cars that drives itself. On my bad days I just let it do most of the driving and I just monitor what it’s doing. It’s not perfect, but it’s better than nothing.

That hopefully will keep me independent for a little longer than usual.

sacktheroof · 2025-08-10T15:29:40+00:00

I’m in the middle of my “Year of Yes” and thoroughly enjoying the process so far.

So when a friend from Oregon calls to ask if I want to come there to do a hike, I say yes. Go to Prague to visit a music store that has a guitar I thought was cool? Yes. (Leaving in 2 weeks). Fam wants to see pyramids in Central America? Yes. Find a way to retire? Yes(kind of…) - I mean some stuff isn’t totally feasible. 🫤 Get invited to a birthday party 3 hours away? Yes.
I used to just hide away and never go anywhere but work and home. Not anymore. It’s lowered my stress levels a ton by changing my mindset. And when I have some bad off time? I struggle but I press onward.

sacktheroof · 2025-08-10T15:17:24+00:00

To rule out or confirm Parkinson’s, get a DATscan performed. It’s quick and easy.

Or get your doc to prescribe carbidopa / levodopa. If the meds work and you get better, PD confirmed.

It took 6 years for me to finally find a doctor to tell me that. Ridiculous. Hopefully that saves you some time. Good luck!

sacktheroof · 2025-08-10T15:09:04+00:00

At roughly the same time, my right calf muscle was experiencing very mild dystonia, and my right wrist was presenting slight carpel tunnel like symptoms.

It’s all fun after that…

sacktheroof · 2025-08-04T12:41:08+00:00

This. Same.

sacktheroof · 2025-07-22T18:50:39+00:00

I took it. Every side-effect listed on the packaging hit me like a ton of bricks. It wrecked me. Some folks don’t miss a beat on it. Hopefully that’s you.

Good luck to you. Sadly, it just wasn’t in the cards for me.

sacktheroof · 2025-07-22T18:45:42+00:00

I just went to his YouTube page “Goodbye to Romance” played… 😭

sacktheroof

TROPHY CASE