How long did you work with PD?: It seems... - Cure Parkinson's

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How long did you work with PD?

ScribblerCLT profile image
15 Replies

It seems that most of the PD folks I met had to stop working within a few years of diagnosis, often because it got too tiring. I am 53 and pondering what to do. Thoughts, anyone?

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ScribblerCLT profile image
ScribblerCLT
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15 Replies
jeffreyn profile image
jeffreyn

Every PwP's case is unique. If it was me, I would be thinking about what my symptoms were, how they were affecting me at work, and what my financial situation was.

lenamm profile image
lenamm

I'm almost five years in (46 years old). I got bad enough last year where I had to stop working for four months. Post brain surgery I can work again and hope to as long as I can. I run my own business and have a schedule where I only work three days a week, seven hour days, which helps me do self care, rest, and exercise. I realize I am lucky to be able to set such hours - could not do a 40 hour week. Financially I am single, still live with and support my 22 year old son who is in college so not really a choose to not work unless I want to live in poverty or reply on my parents which I hope to never do.

ccobroussard profile image
ccobroussard

I was dx all 44 and stopped working at 52. Fatigue and exhaustion.

PDGal4 profile image
PDGal4

Diagnosed in 2012, worked full-time until through 2017. I am fortunate that my business was mostly through appointments, so I had a home office and could schedule meeting times with clients, for the most part, during my most functional parts of the day, and could take breaks and lie down when I needed to. I would not have been able to work the last 2-3 years if I had to be somewhere 9-5. I turned 65 this year.

Rocke profile image
Rocke in reply to PDGal4

Was diagnosed in 2014. Worked full time at a very high pressure job until March 2019. I had full responsibility for a very important 2 year project. I was 68 and decided I did not want to make the commitment to work another 2 years, not because of the PD but I really don't want to be working full time under that much pressure at 70. I now assist with the project and work 2 days a week. The pressure of leading the project is off and I'm not committed to a 2 year time frame yet I can continue to do what I love. I'm very lucky.

Mom95 profile image
Mom95

I was officially diagnosed 4 year ago but had symptoms for 8 years before then. I currently work full time as a teacher. I get home and lie on the couch exhausted, But I need to work financiallyas well as mentally I would go bonkers sitting at home. I have a son who moved to Washington and I promised him that I wouldn't follow him there unless I took a turn for the worse. My doctor wont approve disability because I can work--even if it leaves me exhausted. The symptoms I have (balancing, walking in a straight line, and tremors) usually manifest theirselves at 4 pm or so-I am home by then so no worries:) I do take meds during the day. Last week my doctor suggested that I talk to the surgeon about getting DBS done. He says I am an excellent candidate because I am fairly young (56), c/l works great for me, and I have no other underlying medica problems. I will go talk to them as soon as I get the referral.

Aleagles profile image
Aleagles

Diagnosed at 55 had to retire at 64 I had dbs same year.

GymBag profile image
GymBag

Job was sales manager heavy equipment, lots of travel, presentations, meetings and I noticed that I could could not take notes that I could read when I got back. Diagnosed two years later at 55 , told the company and we worked on changing the job to less physical. Worked until 61 when an opportunity came along I grabbed it and retired but I missed the the last five gravey years and government assistance with medication does not start until 65 so we spent the savings about 60,000 on medication.

Would I do it that way again ? YES

I wake up every morning and think "I dont have to go to work today" I like it so much I wake up and say it at least twice a day. There comes a time when You just cant bloody well do it any more . Bend like a tree or you will break.

BaileyCO profile image
BaileyCO

I was dx at 55 and almost 5 years later I am still able to work. I work from home, only occasionally driving in to office ( 50 miles) for meeting. I work 45 to 50 hours a week managing an AR team of 7. Hardest thing is finding enough time for self care.

etterus profile image
etterus

I had symptoms for 10 years before I was diagnosed which was complicated by not having any tremors. Once diagnosed I managed to continue for 9 years in my own private practice physical therapy outpatient clinic. I reluctantly closed it down due to my inability to maintain a consistent schedule.... I was canceling 30-50% of the time.

At 71 today I would still be working at least part time if I could. I loved my career. Shutting it down was like cutting off my leg!

kaypeeoh profile image
kaypeeoh

I was diagnosed two years ago. I tried sinemet but quit due to side effects. I'm a veterinarian, still practicing six days a week. My only symptom is dominant hand tremor. It doesn't affect my doing surgery. We've put the practice up for sale and may have a buyer already. My wife is using my PD as an excuse to retire and move closer to our daughter in Massachusetts. I really don't want to move there but don't see a way out of it. I'd hoped to ultimately retire to Arizona or New Mexico.

kpo

ScribblerCLT profile image
ScribblerCLT

Thanks everyone for your replies. They really help me ponder a wrenching decision. I was diagnosed two years ago but I know I’ve been showing symptoms for six years and possibly as long as 10. I’m actually quite healthy but my job as a lecturer involves public speaking, writing, and multitasking. The imbalance, micrographia, deteriorating speech and fatigue are making things difficult. It’s hard not to overdo it since it’s a job hazard, and as soon as I’m too tired I fall a lot and fall asleep unexpectedly. I switch between almost normal and really wobbly, which doesn’t advance a consistent work ethic. It’s nice being in the work environment, but it’s also nice not to put myself and others at risk.

bassofspades profile image
bassofspades

I almost gave up multiple times . Im 50 and diagnosed 7 years ago . My last 2 week pay period i put in 100 hours and I feel strong, sharp and steady. Big difference from August September when I was a wreck and contemplating disability. I've been experimenting with supplements such as lithium orotate, horny goat weed and started on a low dosage of requip. Also intermittent fasting, which basically means no snacks no breakfast.

Good luck !!

PD makes every situation unique. I do think we should stay as active as possible and continue to set physical, financial, and professional goals. The most important thing we can do is realize that the time you have left to be a productive member of the work force is going to be acutely limited. PD steals time. So with the time you have left try to tear it up. Do some serious living!

I was diagnosed in 2008 at age 47. It lit a fire under my ass. I ran after my dream and my passion and in 2010 opened my own Burger & Craft Beer restaurant. We grew the concept into a 5 store chain in 8 years. During that time I was busy as shit and I loved what I was doing .My symptoms moved along very slowly. Sold my share of the restaurants 2 years ago and I miss the action and my symptoms are taking their toll. Time to re-charge.

Rosenmu profile image
Rosenmu

I was diagnosed 3.5 years ago at 64 and trying to work full time in a stressful business. I quit and now work only 25 hours a week for a big box store. It gives me time for self care, money to pay for supplements and exercise. I have lots of energy most days and feel pretty good. I hope to continue working for another 3 years. My husband still works as well, so we are ok for now.

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