How long were you in the prodromal stage ... - Cure Parkinson's

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How long were you in the prodromal stage before your tremors were visible to the public?

PDWarrior1900 profile image
13 Replies

I do "outside sales."

I dread the day that my thousands of internal tremors become "visible" and then I will no longer be able to work.

In the last two months ... my creeping progression of PD ... has reached the "visible status" in my fingers (both hands).

It is still very infrequent and only noticeable to me.

I'm trying to "plan" for the future.

Any info would be greatly helpful

Thanks!

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PDWarrior1900 profile image
PDWarrior1900
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13 Replies
johntPM profile image
johntPM

I'm not a medic, so make of this what you will. Levodopa has only a partial impact on my tremor. Nevertheless, it does make a difference. Assuming that you're not already on levodopa, the importance of keeping your job may make it worth trying sooner rather than later.

Gallowglass profile image
Gallowglass

I went on C/L one year ago. I do fast waking, exercise, gum chewing and physical therapy for balance. I can still walk 2 miles daily, and only have breakthrough tremors, dystopia, and stutter steps, when meds are wearing off. No serious freezing yet, except my fave sometimes. I am a very busy retired person. Tending a farm and doing church activities. Spirituality helps me cope. We believe that we can accept and offer suffering for reparation and the good of others.

gaga1958 profile image
gaga1958 in reply toGallowglass

can you elaborate on gum chewing?

Gallowglass profile image
Gallowglass in reply togaga1958

I have a problem with dry cough, diminishing vocal volume, and choking on thin liquids which is all supposedly caused by vagus nerve neuropathy ( makes sense as I also have peripheral neuropathy). But if I chew gum the coughing stops and I do not have as much choking. Studies have shown that this works. It was recommended by a voice therapist. I chew gum (aspartame-free) whenever the coughing begins. Usually 3-4 times per day.

gaga1958 profile image
gaga1958 in reply toGallowglass

wow, who knew gum could help all that, thxs

PDGal4 profile image
PDGal4

I worked full-time in sales-related capacity, out with clients and other reps for hours a day, full-time for 6+ years after diagnosis and then another 2-3 years more but not as full time/actively. I was lucky to have that option and took it more because I was physically exhausted to run around all day like that than because of noticeable symptoms. I've found I notice things more than other people do.

PDWarrior1900 profile image
PDWarrior1900 in reply toPDGal4

thank you but i'm not sure if i understand your reply...

are you saying that after dx'd ....

you were still able to do outside sales for 6 years ...

and you have 'no' noticeable tremors?

PDGal4 profile image
PDGal4

Yes on the first Q, if you mean by outside sales onsite with clients and at times other sales reps; I don't have tremor

PDWarrior1900 profile image
PDWarrior1900 in reply toPDGal4

what about now?

are your tremors visible?

(sorry to be so 'personal' ... as of right now, i'm 100% ok on the 'outside' ...

but I'm not sure how long that will last)

PDGal4 profile image
PDGal4

I understand your concerns. Tremor is one symptom of PD I do not have. Most my symptoms (slowness, stiffness) fortunately are relatively mild and although they have progressed over 11 years, do not seem to be that noticeable. Since you are recently diagnosed (or in one post I read of yours, not officially diagnosed), you are probably not taking medication and don't need to deal with wearing on/wearing off symptoms or dyskinesia (again mine are thankfully mild).

I was very driven and successful in my career, enjoyed my clients and thrived on the interaction and contact with them. In slowing me down physically, PD has taught me to slow down internally, to take more time for myself, and to focus on what I do each day as opposed to the things I ran out of energy for. It's helped me to remember that PD is a progressive disease; at least in my case, I didn't wake up one morning suddenly worse. There are also bad, okay, good, and very good days.

I am not sure if you mean financially or otherwise when you write about 'planning' for the future. I truthfully retired a few years before I would have if I didn't have PD. I needed more time for exercise, yoga, and other self-care practices. Hope this helps you in your own PD journey.

Just arrived in my inbox: Today is International Self-Care Day. I'm a huge believer in synchronicity. Thank you for PDWarrior1900 for the reminder.

PDWarrior1900 profile image
PDWarrior1900 in reply toPDGal4

thank you very much for your detailed and thoughtful reply

very glad to hear that you are in a 'good state' overall

wishing you the best

Juliegrace profile image
Juliegrace

I had some internal tremors in my very early stages, but I never had visible tremors until recently, 14 years later, and they are not regular Parkinson’s tremors, but more of stress related shaking in my legs when I am extremely low on my meds. There are different types of PD. I have non-tremor dominant PD.

PDWarrior1900 profile image
PDWarrior1900

thank you for the feedback .. STAY STRONG!

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