Grief or PD?: I was diagnosed with PD in... - Cure Parkinson's

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Grief or PD?

al315 profile image
26 Replies

I was diagnosed with PD in 2018 at the age of 49. My neurologist prescribed Sinemet (2 pills 3x a day). My symptoms were well-managed and most people wouldn't have a clue that I have PD. The dexterity in my right hand and slow movement were my symptoms.

Fast forward to May 2021. My wife was diagnosed with Stage IV colon cancer. She passed away in March 2022. I have increased my Sinemet to 2 pills x 4 or 5 times per day. I am still very mobile. I run 3 miles and bike 15 miles. The biggest complaint is fatigue. It usually happens in the afternoon and I have to crawl into bed. My primary physician prescribed Prozac in January thinking it was depression. I took a small dose and didn't notice any changes. I noticed tremors and no mood changes when he increased the dose and I stopped taking it. I work fulltime and this is starting to affect my productivity. How do I know if my fatigue is attributed to grief or PD?

Has anyone experienced something similar?

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al315 profile image
al315
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26 Replies

Just reading your post and I wondered if your sleeping pattern has changed. It has a hug impact on my energy levels. Sorry to hear about your bereavement.

al315 profile image
al315 in reply toStillstandingstill

I have noticed change in sleep in the past year. I wake up between 5am and 6am most days. Activity has an impact on sleep. I get better sleep at night when I'm active during the day.

park_bear profile image
park_bear

Fatigue is commonplace with Parkinson's. This may be helpful:

healthunlocked.com/cure-par...

My condolences on loss of your wife.

johntPM profile image
johntPM

You write that fatigue usually sets in in the afternoon. This could be caused by you running low of levodopa in the afternoon. While keeping your total daily dose of levodopa constant, you might wish to consider adjusting: the dose size, frequency and timing; exercise; and the timing and content of any meals that you take, especially protein.

al315 profile image
al315 in reply tojohntPM

I have always noticed a dip in energy during the afternoon (even before PD). Sometimes I take a 1/2 pill if my symptoms don't improve.

pdpatient profile image
pdpatient

First, my condolences to you. You have suffered a major loss and it triggers high level of stress.

Can you see if your doctor is willing to prescribe anxiety and depression meds?

al315 profile image
al315 in reply topdpatient

I was prescribed Prozac but it had side effects. I am willing to try another med.

pdpatient profile image
pdpatient in reply toal315

Good. Please do ask. These days there's a lot of options available and they do take time to work, like 3 to 6 weeks. So, the sooner, the better.

I wish you all the best.

MBAnderson profile image
MBAnderson

I am sorry for your loss.

al315 profile image
al315 in reply toMBAnderson

thank you

genesurf profile image
genesurf

I have had b12 deficiency and it was like that. I was overtaken by exhaustion in the afternoons, and after exercise.

al315 profile image
al315 in reply togenesurf

My primary physician did a blood test and B12 is normal.

genesurf profile image
genesurf in reply toal315

Good that it was tested! But please get the serum B12 number and make sure it's high enough. The "normal" range in the US is too wide, and many people will experience deficiency symptoms at the low end of the normal range. Plenty of zombies stumbling around because their levels are in the low 300s.

If your serum B12 is below 450 pg/ml, you'll probably have more energy if you raise it to at least 500. Good luck and I hope you feel better soon. Really sorry to hear about your wife, please take care.❤️

Gymsack profile image
Gymsack

I often take a nap in the afternoon . It is no big deal , change your lifestyle a very small amount and allow for a nap. It is probably the PD.

The loss of your wife will create very much stress and stress inflames the PD. Watch for things and people and places that are stress-full and avoid them . May be time to change the image you have of yourself . You are not superman . and PD is not Parkinson.s inconvenience.

People often try to tell me that I am depressed and that I should be treating it. I tell them that I am not depressed. I am angry, disappointed , pissed off, confused, tired , over and under medicated, off balance , constipated, slow sometimes frozen , mis-understood and ignored but not depressed.

PS : its raining again, ,every day that we get even a small break in the clouds and see some sunshine it is followed by rain that night. thats depressing.

Bunny622023 profile image
Bunny622023 in reply toGymsack

GREAT Post Gymsack. Gosh - I can totally relate on everything you have said. Think it's spot on. I think fatigue is unfortunately part of PD and progression for sure. My husband always tires of it, always in the afternoon when the 'spoons' get low.

al315 profile image
al315 in reply toGymsack

Thanks. I feel the same way. I've considered scheduling nap time.

MBAnderson profile image
MBAnderson in reply toGymsack

Jim, Where do you live that you're getting all that rain?

HekateMoon profile image
HekateMoon

Oh Gymsack...i so relate...

JohnPepper profile image
JohnPepper

PD isn't the end of the world it is the beginning af a new world that is slightly different. You will have to learn to consciously control some of your movements, which do not now work properly.

You have two different areas of your brain, the subconscious and the conscious.

You do not control subconscious movements but you can do so, consciously.

If you are unable to walk properly then concentrate on each step and you will find you are able to walk properly.

iznogood profile image
iznogood

At what times during the day do you take the Sinemet pills, and do you take them with or without food?

al315 profile image
al315 in reply toiznogood

I take Sinemet without food. Usually at 8am, 11am, 2pm, 5pm and sometimes at 8pm.

MtTam profile image
MtTam

First of all, very sorry for your loss, losing a partner that could have given you support must be very difficult.

My symptoms started like yours at approximately the same age. Did you ever discuss a dopamine agonist, such as Myrapex or Ropinerol with your neurologist? This might allow you to cut back on the Sinomet.

Also, the exercise has helped me a ton. I have a trainer, Concept2 Bikerg that I do High Intensity Intervals on about 3 times a week, and this greatly increases my quality of life. I ride varying lengths on an ebike other days.

Finally, have you talked with your neurologist about deep brain stimulation (DBS)? If you’re a candidate, this works well to significantly reduce medication and can stabilize your symptoms.

Hope this helps.

Bunny622023 profile image
Bunny622023

Condolences on the passing of your beloved wife. 😔 Grief certainly takes a toll in it's own right.

But as gymsack below says, we feel fatigue is part and parcel of PD.... certainly has been the past 25 years for my husband. Depresssion also is part of PD for many but doesn't mean you are depressed all the time either as Gymsack also says. Naps really are no big deal. If you haven't read it already - "The Spoon Theory" also shines a light I feel, very well, on energy in our days, for people with a chronic disease.... I find it 'exact' as to what happens in our lives.... all the best.

al315 profile image
al315 in reply toBunny622023

thank you. I'll check out the Spoon Theory.

Ctime profile image
Ctime

I find that standing is the only way to stay awake in the afternoon at work. I try to do stand up tasks during my sleepy hours and I also use an adjustable desk, stand or sit. When I am not working and can exercise in the afternoon I do not feel nearly as sleepy.

gomelgo profile image
gomelgo

Could be PD FROM grief too.

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