To work or not to work, that’s the question!?

[ion_ion]

I was dxd in February 2017 but I felt symptoms few years earlier like intermittent tremor and weakness in the RH hand , the REM disorder , anxiety and lack of energy. In January it was first time when I realized the RH tremor (still intermittent but showing more often) could be something serious. I saw a neuro who said I had ET but I told him straight to send me to a Motion Disorder doctor who said without hesitation I had PD and prescribed C/L which I refused to take. I saw other three doctors during a short period of time; one said ET the other two PD. When I realized I had PD I went down and I was at the point to quit the job as I started having a lot issues: balance, depression, anxiety, insomnia, urinary urgency, foggy mind, lack of concentration, lack of energy etc.

I never believed the supplements or praying to some imaginary gods will make miracles. But starting March 2018 I gave HDT a try without believing in it because I had nothing to loose. I read enough to make sure it was not harmful. After a week I felt more energy and after a month all the symptoms listed above except the tremor went away. I continued to work and I’m still working today even if my job sometimes is very stressful; but per overall, keeping the job helped me more than quitting it. During the lock-down, when I stayed home for three month , I got crazy. If I do a project, especially if it is something new and interesting and keeps my mind busy, the tremor slows down and I feel good. I do not think HDT had a placebo effect in my case because I was pessimistic regarding it; later on I stopped it for three months and the symptoms started to come back.

I’m 65 and I read here about people much younger than me quitting the job to manage the PD. In my case keeping the job helped me but I had to learn to manage the stress. I had one stressful situation when I started to shake like crazy because I made a mistake in a program and I had only 10 minutes before they started production; it was something easy to fix but I was worried someone will see me shaking and that made the things worse; otherwise, most of time I feel okay and the tremor has low amplitude. I noticed that in order to get immune to the stress I had to fight it and not to run away. A year ago I started 3x100/25 C/L a day to help me with the tremor; for long time it did not do anything but lately I feel a little relief if I’m relaxed (If I’m not the C/L does nothing).

That’s why I decided to go for FUS in Switzerland , to get rid of the tremor, the single symptom I have after four years of PD. Yesterday it was supposed to talk with dr. Jeanmonod by phone but we postponed for 11.9.20.

I can fully retire in few months and I think to continue to work on contract basis especially during the winter. I’m electrical/software engineer for auto industry and I’m sure after the elections and after the C19 vaccine is resolved for sure we will have an economic boom in USA. Even at this time I get a lot of offers for full time or contract basis.

[jimcaster]

This is a decision only you can make. That said, it seems like retiring, but continuing with contract work allows you the most flexibility to work when you want or to travel and relax when you want. Good luck with your decision AND with Dr. Jeanmonod.

[MBAnderson in reply to jimcaster]

Totally agree with Jim.

[park_bear]

Engineering is an enjoyable and useful occupation that keeps your mind exercised. By all means continue as long as you find it beneficial.

[Isthistheone]

If you really love your job, you'll never work another day in your life. Decision is all yours. Thirty years ago stress wasn't a problem. I'll be 70 years young in a couple of months. I prefer taking my grandsons fishing. When you make the decision just make sure you have plenty of things you like to do.

[pvw2]

The main consideration: Can you do the job safely. Then, can you be productive. Finally, do you want to and can afford to retire. If one of the first two is no, you should qualify for disability. Long term disability usually ends at age 65, but Social Security in the US will allow to qualify for the equivalent of full retirement age. However, you wouldn't have the full benefit of no limitation on how much you could earn working as with full retirement age. Thus, if you retirement is good, you probably would want to wait on full retirement age for Social Security.

[pdpatient]

IonIon, you have your answer in your own words: if you do something that you do is interesting and fun, you feel better. Why do I think that is? Dopamine!

Same thing happens to me every day when my day at work goes well. I love my job and I am good at it. I also have a new, disabled workforce friendly employer. I am able to live better with less medication. This is 8 years past diagnosis and I am 55.

Under the right conditions, (you can create the one that you like) given that your skills are in good demand, this should be easy for you. The job market is terrible right now and you are in the right industry.

Good luck to you and God bless you.

[SELFMeder]

HTD?

[ion_ion in reply to SELFMeder]

HDT - High Dose Thiamine

[laglag]

I was diagnosed at age of 46 in 2003, 17 years ago. I retired in 2014 at the age of 52. It was the best thing I ever did, but I had a very stressful job working in Financial at Allison Transmission. I went on SSDI and long term disability thru Allison until I'm 65, so I actually seem to have more money now because I don't need to spend as much money on clothes, gas, lunch, etc. Rock Steady Boxing (RSB) really helped slow the progression (was able to go more often which also helped and it takes time to go consistently), and being away from the stress helped also. I would like my husband to retire soon but he says he loves his job and doesn't know what he would do all day. I find that my time fills up quickly on retirement, but if you love your job then it might be good for you to be at work if you like your job so well.

Good luck in making your decision! It's a big one. But I believe it will reduce your stress level and help you work on the PD and as a result help your symptoms. If you get bored, which I do not, you can always volunteer somewhere. There are several people I know with PD that volunteer for RSB.

Keep fighting!

[pdpatient in reply to laglag]

Well said, Laglag. I 100% agree with the decision that you took to take Long Term Disability (LTD). I regretfully have to say that I didn't make the right choice. The HR department also didn't advise me properly.

I worked for my company ( a very large one) for over 16 years and when I was diagnosed, I struggled through my gruelling work related travel schedule for 2 years after. My pride, false sense of self righteousness and dignity stopped me from giving up and going on LTD. I erroneously thought that there was something morally upright about fighting back the disease. I was in denial. I was laid off unceremoniously shortly after and there was no sympathy or empathy from my employer. I had to threaten to sue them in order to get my severance pay.

It's a dog eat dog world out there and I don't think that we as Parkinson's sufferers will ever get the time of day. It's sad but true.

I congratulate you on your wise decision. I on the other hand will need to pull through the next 15 years to retirement.

[Gioc]

In my opinion I know only one way to reduce a problem: double it.

Yes, just like that because in withdrawing even the small problems seem enormous.

There is no limit that cannot be overcome unless you yourself admit that you can't do it.

After this decision it will be a decline.

As I was taught by a veteran of the Nazi extermination camps who said that we have no idea how strong and resilient the body is until you put it to the test. and I quote:

Liliana Segre tells us:

"You are strong. You have no idea of

how strong you are. In those moments

you become resistant to hunger, hunger

fatigue, lack of sleep. I

I couldn't believe it at first,

to be so strong: I wanted to live,

I just wanted to live. I only knew

this".

Congratulations Ion, you are certainly an example to us all.

caritas-ticino.ch/media/riv...