Hi all. I was recently diagnosed at 38 years of age. All the issues that I have had over the past couple of years with anxiety, depression, loss of coordination, difficulty walking, weakness, fatigue, and nerve pain finally make sense. Fortunately, c/l and exercise works really well for me so now just a couple of month after being diagnosed I usually feel pretty decent. Also, though I took a few weeks off work initially, I am back at work. However, my productivity has taken a nose dive. Part of it is me purposely trying to walk a fine balance between keeping my stress low and being a productive employee. A lot of it is just that I get so physically and mentally TIRED. I simply don't have the energy I used to. I struggle to keep with my peers and need to take frequent breaks to re-charge. Anybody have any advise on coping with this? I have been very open about my diagnoses but am I'm concerned about the impact my sub-optimal performance is having on my career. As I have two young kids and a wife, my financial situation is not conducive to me stopping working.
YOPD and continuing to work. How to figh... - Cure Parkinson's
If at all possible, try to work from home at least a couple days a week. I discussed with my employer and was able to work from home except when I traveled and I was the most productive person on my team. Not having to dress up and commute back and forth to work allowed me to put the extra energy into the job.
Welcome to the HU forum. Have you heard of Dr Costantini’s protocol?
If not please do a search on this forum in how his treatment can change PwPDs life.
Please let me know if you have any questions.
Here is a link to almost all of the information that describes what Kia17 is talking about:
Except for our ages, I had to deal with a similar situation. My dx was in 2011 while I was working in San Francisco for a software company. Big paycheck but big-time stress too. And, as with you, I couldn't stop working just then. I was as active as I could be; riding my bike from BART to work, taking fast walks during lunch and breaks, standing while I worked (which was hard, but I wasn't the only one doing it). None of the meds my neurologist gave me seemed to help at all and one even made me paranoid. I couldn't tolerate ld/cd meds and I just got worse and worse. As for being tired, yeah that was hard. Eventually, I discovered that I got tired after eating heavy, greasy or oily food. I cut all of that out - along with dairy - and that helped.
So I saw the handwriting on the wall and made plans as best I could. I refinanced our house to lower the payments, my wife took an online job, and I worked for as long as I could. When I finally had to "retire" at 55, I applied for and got money from CA's disability insurance program, applied for and eventually got 100% disability so that I could get Social Security disability checks and Medicare. It's far from perfect, but we have just enough to keep going. I finally found Rytary (ld/cd) med I can tolerate, and I'm still staying as active as I can.
Fortunately, our son was grown and very independent. Having two young kids makes it tougher for sure. If you have family nearby, you might reach out to them. Good luck!
How easy or difficult was your path to SS disability?
Juliegrace, what state do you live in? I live in Indiana & was able to get SSDI first time I applied. A social worker at Rock Steady Boxing gave me some pointers that helped a lot. I'm not sure if the rules are different by state or not? You can send me a private message when you get ready to apply & I can give you some pointers.
I live in WA state and, luckily, am not ready to apply. I have a friend who has multiple ailments (not PD) who has been going through the process for two years. It's been an absolute nightmare for her.
I truly appreciate your offer, and when I am ready may take you up on it.
It wasn't too hard. Some ridiculous forms to fill out, which were difficult for me at the time, because... well... I had PD and wasn't on any meds yet. Thanks to my wonderful wife, we muddled through. It took about 8 months from the time I submitted my paperwork to getting the first check. They do pay you for the time you wait, which was a life-saver.
I see others saying that it took years and that it was a nightmare. I think one thing that helped me was my condition when I went to be evaluated by their neurologist. I hadn't been able to tolerate ld/cd meds, so my PD symptoms were super obvious. He had me walk 10 feet then said "That's all I need to see. I'll take care of this for you." I got approved 2 weeks later.
About two years ago (Before diagnosed) I re-financed our house to a 15 year mortgage which increased our monthly payment for the better overall bottom line. Now my wife and I both work to pay it off. If I can make it 13 more years we are good. If not, we're going to have to figure something else out because we can't afford the mortgage on just her salary.
I would consult a disability attorney ASAP. With SSDI and lower expenses (commuting, maybe downsizing to one car, investigating social services, less eating out, etc) you may be able to make it. Even better, if possible, going part time. For sure the lower stress level is worth it!
13 years is a lot. A plan B worth considering would be to sell the house soon. We are likely at or near the top of the market. Take your capital gains, rent for a while, and at some point switch over to a lower stress telecommuting employment from a peaceful lower-cost location in the countryside. I did something like that even though I was not ill at the time, and have been happy with result.
It's possible that, with a lot of exercises, diet, and maybe B1, you could make it 13 years. But you say your job is stressful, so I probably wouldn't gamble everything on that. It depends on how aggressive your PD is, too. I've heard of PwP who develop severe symptoms in a few months, much less 13 years. Those seem to be cases of inherited PD. My point is that it's a big gamble. Selling and down-sizing, maybe moving to a cheaper area, might be smart.
I have a very similar situation. You are not alone. Hang in there. Philippians 4:6-7
Tough situation. My heart goes out to you.
Young onset PD can be a tougher situation then it is/was for many of us who were at or near retirement age, especially with younger children and because you have to keep a job. It’s hard enough shepherding a family through the vagaries of life without the additional burden of PD.
The other side of that coin is that at your age, you may still be able to ramp up and achieve a vigorous exercise discipline.
Since you mentioned depression, I would focus attention, reading, and research on that as a priority to keep it at bay. There are many natural herbal compounds & supplements that are helpful and hopefully you can find a good regiment of exercise, pharmaceuticals, and supplements.
Try hard. Stay strong.
We don't get to choose the hand we're dealt, but we do get to choose how to play it.
Best to you.
Yes, even though life dealt me a bit of a sh** sandwich I try to remember that there are others who have it much worse. Also, writing about my troubles here makes it much easier to deal with somehow. I agree that the exercise is important along with the c/l. It isn't quite enough though.
Try Whey Protein Isolate daily for fatigue issues
Caffeine, but not too much. Keeps me going at work. I am 44, diagnosed two years ago. Espresso in the morning and a couple ounces of cold brew in the afternoon. Too much and my lower jaw gets busy.
You may appear to be in a difficult position. But maybe you are not.
You have not kept it a secret, which is good. Have you told your boss about it and how it affects you? If you haven't then I suggest you do. You will probably be surprised by his reaction.
The fact is that STRESS affects Pd symptoms quite seriously, therefore you should discuss your work situation with your boss and see if he can remove some or all of the matters that stress you most. It might mean taking a lower paid job, but that is better than losing your job altogether. You might find that you become more productive in your job if you don't have the stress factors.
Do you know much about Pd? If not, try to read up a much as you can. Then tell your boss what you know.
My experience has been that I was told there was nothing I could do about my Pd and I would land up unable to move at all. Well that did not happen! To years after I was diagnosed my neurologist changed my medication to an MAOb inhibitor and I stopped going to the gym for 90 minutes a day and started to do FAST WALKING, with an organisation here in SA. Within four months my condition started to get better and after eight years of slowly getting better, I was able to stop taking the MAOb inhibitor and I started to live a normal life again. That was in 2002. I am nownearly 84 and still live a normal life and still walk seven kilometres every second day within one hour. Don't for one minute think you could not ever do that! I thought that to begin with.
Look at my website and read as much as you can. reverseparkinsons.net
Contact me, as hundreds of people have done. I will answer all of your questions and send you all my videos.
Take action, while the Pd is still in the early stages. I was 29 when my first symptom arrived.
I have told my boss and explained how detrimental stress is to PD. Fortunately, he is very supportive about keeping stress as low as possible. Just today, he even agreed to allow me to telework two days/week and has started the paperwork to make that happen. I hear you on the fast walking but because my gait is all screwed up, walking hurts my knees and hips. How about the elliptical machine?
when were you diagnosed? Degradation of gait at the age of 38 should not happen upto at least 2 years of diagnosis
2 months ago. I've had gait problems for years though. Some of my first symptoms were stiffness/weakness in my right calf and ankle 8 to 10 years ago. Since about 2016 I've walked with a limp. Hence my name.
I was too busy and frankly in denial about my deteriorating health for a long time and didn't seriously pursue a diagnosis until I got so bad that I was incredibly stiff and more lurched than walked. After two months of taking c/l I feel much better but still limp.
Hi Limpmaaster. That is the first step. Now, the next step: You must start to do Fast Walking. Only ten minutes every second day, before you even go to work. For more info on this, the THE PROVEN WAY TO OVERCOME PD SYMPTOMS THAT COSTS NOTHING!!!!
That is possibly why it does not get much positive press. But go to my website - reversparkinsons.net. and see what you can do that costs nothing!
Research fast paced cycling if walking is a challenge
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