My husband was diagnosed at the beginning of this year, he is constantly tired, and now struggling with work, is the tiredness down to p/d?

[ALDI]

or is it the drugs? it doesn't help that just before he was diagnosed he had to go from 8 hour nights to 12 hour nights, ive asked him if he can go back to 8 hours but he said there isn't a vacancy for 8 hour nights!

[grayland]

That is the major question I went through when diagnosed five years ago. I was told it is pd and I believe that.

I worked as long as I could then retired. I think it is the hardest of all the symptoms to deal with. I wish you

both well. Exercise seems the best antidote along with naps, which I know is hard with work.

[Cassy52]

Exercise & slow release vitamin B ask if your husband can take them with his medication!

[Prayingforacure]

My husband was very low on TETOSTERONE, his Dr. Checked it because of being so tired, the shots really helped him. My husband went off all pd MEDS a year ago.

[srarndt]

Yep, dang it, it is several conspiring factors as different as our metabolisms, our stamina, Pre and current

PhySICAL and lifestyle conditioning habits, and your sleep hygiene. etc. Oh well, back to square 1!

[JohnPepper]

Hi ALDI. Do you mean that your husband has to work for 12 hours or sleep for twelve hours?

I am not a doctor, only a patient. I have had this problem since long before diagnosis. I worked endless hours and went to sleep easily, but could not stay alsleep for more than 3 hours. I found that if I read a book for an hour or so, I could go back to sleep again but only for a maximum of 2 hours, then I was wide awake and restless. I then found that working on my computer kept my mind occupied and I did not fall asleep. But when away from the computer I could drop off easily, without even trying. If I allowed that to happen, then my sleeping hours at night became less. I just had to keep my mind and bofy active! I walk up to 8 kilometers every second day, but as the years have moved on I am down to 6 kilometers at the age of 79. I don't walk for longer than one hour. I hope this helps you.

John

[Justsayhi]

I find myself getting very tired Throughout the day I think for me it was the medication I have to take to counter the effect of the Tremors caused by the Parkinson's or the Sinement . The Dopamine in the Sinement makes your body tremor and it will make it hard sleep . It's a Vishious Cycle of taking drugs to help with The Parkinson's and taking drugs to counter the side effects that you get from those drugs . I feel like a test tube because I'm constantly switching Dosages of drugs and new drugs. I hate taking all the pills but if I don't, I can't move. I

also Suggest a constant workout program , to keep your body moving. I have a problem maintaing my weight because of all the medications so I burn a lot of calories a day. I go to GMC and buy Protein Supplements, to drink with my diet. Make sure it's a high calorie pluss Muscle tone, it helps with lifting weights. Remember when you lift don't lift heavy weights, light weights 3 to 4 sets 10 reps each. This will keep your body muscle tone. If your not sure what to do ask a instructor at the gym you belong to. Don't forget to tell your doctor everything. Remember it's a constant changing of medications and dosages. If you have a good Dr. He will test and change your Meds to tune you up...I hate to say its a constant pain in the ass but your body will want to fight the Parkinson's and so must you. Everyone is different on how it Affects them. I am 56 will be 57 in April. I was Diagnosed with Parkinson's over ten years ago. He will get used to the Routine . This is a big must have your Doctor help you start Applying for disability. Do it Immediately you have to be Disabled for two years before you can get your Medicare. You will need all this because The cost for the medications and doctors are Crazy . You don't need a lawyer to start This process you can start it yourself but make sure your doctor writes a letter for Social Security Diability, the doctor will know what to do. You husband will be checked out by the government doctors. Don't worry he will get his disability. Have Him Enjoy his life and start working in his body like I stated above. When he get tired there is nothing wrong with taking a nap. He is a lucky man to have a woman like you to take care of him and look out for him. I envy your husband I have been single for many many years now and unable to meet a woman that will except me having Parkinson's .. I know if I had a loving wife like you it will help me with the Disease...take as much stress off his life as you can so he can fight this. It will help with slowing down the disease. I know when I'm feeling happy my body feels better.. Maybe someday God will,bless me with a loving woman by my side...sorry to run on and on. Please if you want to ask me anymore questions please feel free. If I can help answer them I will. You may call me too if you like. 949-294-3048 God bless you both. Marty

[windwsprer in reply to Justsayhi]

Hi - I hope so. Don't give up at your age. It might surprise you who's out there.

[coco71]

It is the PD. It comes with a fatigue that is unexplainable

unless you experience it. My doctor gives me Ritalin to use when I have to go. Otherwise I have learned to listen to my body when I can. I come home from work and lay down every day. It is so not far to my kids but I am still working full time which we need. PD sucks.

[Pete-1]

Fatigue is certainly a PD symptom. I don't recall any drugs causing this. Sleepiness or especially sudden onset of same is often cited as a side effect in the patient information leaflets.

To a certain extent the fatigue can be reduced by minimal resting and continuing with physical effort of some type. On a day when I start with some activity requiring physical effort for a large proportion of the day then I will at some point feel that I am unable to continue but if I do continue then sometimes that feeling of fatigue fades. Sometimes it coincides with the time when my next dose of drugs is due. If so I will rest because continuing is dangerous because of my gait freezing problem that shows at this time too.

[grandmasanta]

I, too, get so tired that I can not sleep. I average 4 to 6 hrs per night, I was diagnosd 2 yrs ago,,,,I had symptoms for several yrs,,I am 58 yrs old....too young to feel tired constantly. I find that walking several times each day helps alot. I walk 1/2 mile per walk approx every hour and a half or at least 2 miles per day, Then I feel better. It takes energy to make energy.

[ALDI in reply to grandmasanta]

Very helpful, Thank you

[windwsprer in reply to grandmasanta]

Thanks.

[soup]

Dear Aldi,

Where abouts in the world are you? Fatigue is certainly a major feature of Parkinson's and here is a link to the Parkinson's UK information sheet on it. parkinsons.org.uk/content/f...

Has your husband told his employer that he has Parkinson's? I think you need to take advice about his work conditions and employment rights because me understanding is that he does have some! If you are in the UK your local Information and Support Worker from Parkinson's UK should be able to help.

Hope you both get a chance to rest during this holiday period

Sue

[ALDI in reply to soup]

In the UK, I told my husband I,m sure the specialist nurse said she can help him with work if it becomes a problem, this holiday period is our busiest time!

Thank you this has been very helpfull

[snorre]

Some of us dont tolerate dopamin agonist (NEUPRO).If he is using neupro it is easy to controll if this is the problem.Just remove it 1 hour before going to sleep and put a new on when awake in the morning..

If this is the problem the effect is dramatic.He vill sleep very good and feel better when avake (of cause) .

I have cheked it out with my nevrolog (norway) and it is ok to remove the neupro while sleeping

All the best

[landman in reply to snorre]

Great theory I am going to try.

[snorre in reply to landman]

i know for sure that it works for somone included myself,but not for all.How i discovered it was that i forgot to replace neupro one evning after it had fallen off and i slept all nigth threw and awake the next morning feeling like a new person.I have recomended it in public here in norway and got very positiv feedback from persons claiming they got their life back..

My nevro was not agree in the beginning but no he is recomending it to others.

I had to stop compleetly with neupro (or any other dopamin agonist) do to pressure in the chest

chestpain.I was afraid it was somthing wrong with the hart but it turned out to be caused by neupro:I tried first to reduse it gradually down to 2mg but i had to stop completly before the pain dissepeare.Also this i had to find ot by myself.

But together with disepearing with the chestpain also my motivation and spirit went away when i stoped with dopamin agonist,a great loss.

all the best

if it works for you you will know it by to morrow morning

God luck

[PatV in reply to snorre]

are you on levodopa now? since agonists did not work for you? they did not work for me either..

[snorre in reply to PatV]

sinemet 25/100 1,5 tab 4 times a day and eldepryl 10mg once in the morning.

After stopped with dopamin agonist my sleep is absolutly normal.

Also to mension what is of importens for me is using a "nose binders" making it easy to breath with the moth shut and sleep naken (little friction so it is easy to turn around in the bed and it is mutch varmer then using a pyamas hehe)

as they say "evrybody wants to go to heaven but nobody wants to dye"

Take care

[landman in reply to snorre]

The info is good, thank you. As you state, everything will not work for all people. What I suggest is you communicate these your findings to your pharmacist, if they can not give you advise then you need a new pharmacist. After all they are the doctor of RX.

I also see a homeopathic MD. They treat my body, not my illness.

[snorre in reply to landman]

You are absolute rigth landman.

The problem is however that they are the eksperts anyway and what are the chanses for doing a good job when seeing them twice a year 1/2 an hour.Foreksample in all this year noone of them has spoken about bloodpressure (witch is to high) and the possible link to PD medi.sine.

I am sad to say that i am not impressed.

But that is my eksperiense and others are proberly happy with the service.

[Jocee]

Fatigue is a symptom of pd. I only sleep 3 hrs at most at nite, so I must take at least 2 one hour naps during the day or i'm falling asleep in my chair.

[chirodoc in reply to Jocee]

I can only sleep 2 hrs at a time. restless legs, joint pains, foot pain seem to worsen witih lying still. I am exhausted by morning

[Sedona]

I struggled with work for 10 years. Extreme physical exhaustion from pushing yourself and not listening to your body is from the pd. However, sleepiness or "all of a sudden, can't keep my eyes open, I have to nap now" episodes I attribute to my meds.

[ALDI]

Everybody has been very helpful!

Thank you

[soup in reply to ALDI]

The pd nurses do not always help with employment difficulties but the ISWs I mentioned are actually employed to give this advice. Parkinson's UK also have a helpline with specialists on such things after Christmas would be able to chat and advise.

[ALDI in reply to soup]

Thank you Soup, I looked at the uk.gov website and found most answers

[Traveller1]

yes fatigue is part of PD. I was diagnosed over a year ago. I work 24s hour a week now, x 3 , 8 hour shifts as a clinical advisor for NHS 111. I have to pace myself, and have found that if I am tired I feel quite lightheaded and nauseous especially with mobilising , ueneven surfaces some types of lighting in shops. I will keep working as long as possible, but easy it ain't!! You have to listen to your body, and take some sort of control of this challenging condition .

[Percy-Parkie]

My hubby has just completed his first year as a confirmed PD sufferer and he too has to take many naps during some days however he is lucky to be semi-retired and works for himself so if he is having a tired day he just cuts his cloth according. I cannot advise as to whether it is the meds or the PD that is his cause!!!!! Good Luck in your research and with the findings.

[cocokay]

Fatigue was my number one enemy until about a month ago. I made a breakfast drink with two tablespoons of coconut oil (CO) and noticed a dramatic increase in energy in my first day. Previously, I slept poorly and had to take a nap everyday. I still sleep poorly but haven’t felt a need to nap since the first day I took CO. My friends and family say the change is startling. I’ve heard many odd comments such, “You’re talking so fast!”; “I can finally hear you on the phone;”; “You are walking so much faster.; “You look amazing.”

I was diagnosed in Jan 2001 and the progression was so slow, I didn’t realize how crappy I felt until I felt good again. The honest truth is, I feel wonderful. I don’t know that it will work for everybody the way it worked for me, but I encourage trying it,

The trick to adding CO to a smoothie is to gently liquefy (melt) the CO first. Blend the smoothie then reduce the speed so you can safely remove the lid without a big mess. While in slow speed, dribble in the oil, then replace the lid and turn on high to blend thoroughly. I’m not sure the other ingredients matter, but for those that are curious, I mix ¾ cup high pulp orange juice, ¼ cup Greek yogurt, (I hate yogurt, but can’t taste it in the drink) 1 spoonful of organic, raw honey (or to taste) , ¾ cup vanilla ice cream, 1Tbs powdered malt, splash of vanilla, ¼ cup heavy whipping cream(to thicken) a few ice-cubes and 2 tablespoons of liquefied coconut oil. Recently I’ve added a couple of teaspoons of Qunal – liquid CoQ10. to the drink. (I also take 800 MG of Q10 capsules every day.) At this point, I’m afraid NOT to have the drink for breakfast. Let me know if it helps.

Kay

[windwsprer in reply to cocokay]

Thanks for reminding me of the coconut oil. I used it getting over CFS/ME (as much as that happens) and the first few years of PK but have been too tired to think well. I'd put it in a cup of hot decaf. It floats on the top but I sip it off the top and get most of it and does it not seem at all unpleasant to me. There are days when coordinating a series of ingredients is a little off-putting but I like your recipe.

[madamebee]

My husband finds that the sinement made all the difference in his energy level...doctor is also very pleased ...he also takes azilect and ropinerole

[margie]

My doctor tested my blood and I was low on Vitamin B-12 under the Neurologist movement specialist point of view, stating we need to have a higher level of Vitamin B 12 , because of PD and making us tired. I now give myself an injection every month.Plus

[quirkyme]

Just being diagnosed and facing the reality of having a progressive neurological disease really hits people hard. That and the PD and the meds can take time to sort through. Is his thinking and movement slowing down? My husband kept working a year or two longer but then had to retire. His current meds, which include provigil to improve awakeness/alertness (and narcolepsy--which he no longer has due to the med) has helped a lot. Lots of patients nap during the day and it's vital to get good rest.

Shift work and night work is really hard on the body. Maybe look online--into how night work affects and stresses the body and how to deal with that. Even if he sleeps during the day, a person usually ends up feeling tired a lot. Time to get a team of his doctor and neurologist etc. together to help him learn his options. Be pro-active. As a caregiver, too, I find I have to 'push things' that my husband doesn't want to face or is overwhelmed with. I don't like that role but I'm getting better at advocating for him with health professionals.

Good luck.

[ALDI in reply to quirkyme]

Good advice, I always go to his app with him because sometimes what they tell him doesn't sink in, he gets home from a 12 hour shift and can sleep till its nearly time to go back to work, he def needs advice from the experts which we should get at his next app in Jan

[Coblrman]

Getting away from a computer for a few days will improve the length of sleep. Trazadone helps too. Sinemet takes care of the fatique from PD. Strenous exercise also boosts the effect of the sinemet but it will take a while to build your body up. Just yesterday I doubled the weight I was pressing with my legs to about 600 lbs. Will be interesting to see if any long term benefits.

[pdmcc]

I ran into same problems, first I thought it was just that I was getting older. But it is the Parkinson's, it causes fatigue. I ended up retiring, joined a gym to keep my muscles from cramping, and I do take occasional naps during the day. It's part of the disease. Best of luck.

[bunnyx]

My wife has had Parkinson's since 1995, the first 10 yrs. Where ok now she sleeps about 50% of the day, her consultant say its a combination of Parkinson's and the drugs she is on mainly Madopar

[lovedogs]

Fatigue is part of PD. My husband was diagnosed in 2007 . My husband works 10 hour days, has had bilateral DBS. He is worn out after work but continues to go on. I am not sure how he does it . He is not letting PD rule his world