Thank you so much for your question and the kind comment about my husband.
Your question was "I have PD and I'm 48, could you please tell me if your husband was/is extremely tired all of the time with PD? I never feel good and I still work but it is all I can do to get through the day."
I am very sorry to hear that you have joined the Parkinson's community at such a young age. Because of your age, you fall under the category of Young-Onset Parkinson's. Unfortunately there are more and more people 50 years of age and younger being diagnosed with Parkinson's. It is definitely not an old folk's disease any more.
To answer your question about being extremely tired all of the time with PD - the answer is "Yes". Being tired is very common among PD patients. It takes a lot of mental and physical energy to think and to move; and the amount of energy used depends on how far along you are with PD. There are other common PD related reasons why you might be tired.
Being tired can be a symptom of taking too much levodopa PD medication. Prescribing PD medications for patients is a very complicated thing for all doctors treating PD - not all patients have the same symptoms or amount of symptoms -and- the disease itself keeps progressing at different rates. That is why your doctors may have to keep changing the dosage, times per day, or the combination of PD medications (sometimes called a "cocktail"). You should discuss being so tired with your primary care PD doctor - they may need to change your medication dosages or types of medication.
Another reason might be the timing of when you take your medications. Unfortunately proteins and PD medications don't work well or play well together. You may need to take your PD medications at least 30 or more minutes "before" your meals -or- 1 or more hours "after" your meals. I would try the 30 min/1 hr combination first and then experiment with the timing. The reason for this is, if you take your medications too close to your meals [meals which have protein foods, such as meat, poultry, and dairy products, and almost all meals have proteins even veggie meals] - then your body has to make a decision as to which to process first - the protein or the levodopa PD medication. Your body will always choose to do the natural thing of processing the protein before the PD medications. Then by the time your body gets around to processing the PD medications, the effectiveness of them is depleted somewhat, and you aren't getting the dosage of medications that your body needs.
At first it was very hard to figure out how my husband could take his medications around his meal times and vice versa, because he was taking his PD medications so many times during the day. We were so used to three main meals a day and eating them at the same time every day. My husband did find a way to juggle eating and taking his medications by eating smaller meals and snacks during the day, instead of just 3 large meals. That seems to work out better for him. We also learned to prepare more meals for him with less protein in them. When we don't want to cook and prepare a separate meal just for him, or he wants to eat something different, we buy some of the frozen microwave meals for him to pop into the microwave - looking for the ones with lower protein - so that he could eat them around his medication times. He can buy different meals that he really likes. The lower the protein amount in what he eats determines the shorter amount of time when he can take his medications next to his meals. We also tried to keep in mind that other members of the family still needed to eat meals that they enjoyed with their familiar proteins; but it was amazing that everyone started to like the same foods. We still eat our family three meals a day together - he just doesn't eat as much as previously. Eating with family members is important, if not just for the socialization. If we want to go out for dinner, eat with friends, or a meal at a restaurant, then he times his medications before the big meal, so that he can enjoy what everyone else is having (including when he wants to eat a big steak or hamburger, etc.). It's a juggling act, but you learn to get and keep more than one ball in the air at a time.
He also carries with him, when we go out of the house, his small fanny pack that has a small bottle of water, his pills, a small container of applesauce (easier to take the bigger pills), plastic spoon, and small snacks of different types. Snacks include cookies, fruit bars, different flavors of applesauce in small containers (they have some really great flavors now - including peach mango, strawberry banana) etc. People don't seem to mind if he takes out his bottle of water to take a pill (sometimes he has to have his medication right away). Whenever he needs to eat a snack, he goes someplace out of the way and munches. We have had only one person to question him in a store about eating; when he mentioned having Parkinson's and the need to have a small snack, they apologized for the question and offered to find him a chair in the store. We have found that the majority of people are very kind and thoughtful when you explain to them about having Parkinson's.
On our support group's website, click on the link "Books & Publications" and go to almost the bottom of this page and you will see a list of excellent books about diet, nutrition, and Parkinson's.
There is a FREE book on nutrition that you can order from the National Parkinson Foundation (NPF) entitled "Parkinson Disease: Nutrition Matters by Kathrynne Holden, M.S., R.D." It is listed on the NPF website's catalog page --- http://tinyurl.com/27u8z8d --- Holden's book is excellent and has lots of information in it specific to Parkinson patients, their meals and snacks. To find this book on the NPF page, go to the top of this catalog page (the previous link will get you there) where it says "Selections are available in the following categories..." and click on "English - Specialized Topics". There are numerous other books listed on these catalog pages that might interest you. Note: You will have to create a free membership login to order any publications from them.
You may also find that taking one or more short naps or breaks during the day will help you. You mentioned that you are currently working. Perhaps if you discussed your illness and the need for a short break or catnap during the middle of the workday with your management, they will not mind if you use part of your lunchtime to do this. Set an alarm clock, watch, or kitchen timer and take a short nap; or even just putting your head down on your desk for a few minutes break will help you. You will be amazed what a catnap or break can do for you - contrary to popular belief cats have something positive going on with their naps. BTW - Discussing Parkinson's with your boss or co-workers is a whole different discussion topic.
When you get home in the evening, be sure to take a short nap or break before gearing up for all the "stuff" that needs to be done on your other jobs - you know, the jobs like housework - cooking - laundry - etc. Also be sure to get enough sleep at night. Give yourself permission to take a little time for you. If you are having problems with sleep (PD patients sometimes do) talk with your PD doctor about this - they can change your medications to help you.
I hope that you are seeing a neurologist who is a movement disorder specialist, in addition to your primary doctor. Parkinson's disease falls under the Movement Disorder specialty of Neurology. Neurologists, who are movement disorder specialists, can really help you to manage your Parkinson's symptoms with expert up-to-date information. In addition to our family doctor, my husband has a local neurologist for his routine PD care, and also for just in-case he has to go to the local ER, hospital, etc. Then on a regular basis he sees neurologists at the Movement Disorder Clinic at the Medical College of Georgia (Augusta, GA), who are specialists in Parkinson's disease. It has made a significant difference in the care of his Parkinson's.
If you are having problems of any type (like being tired) - please don't wait until your next scheduled appointment if it is months away to see your PD doctor - call and make an appointment to see the doctor sooner. Being really tired can cause a lot of other problems with Parkinson's. "Nip it in the bud" before it gets to be a bigger problem. Even though being tired may be a common PD patient symptom, there are ways to help you. Also, there could be other reasons for being tired that are not even PD related problem, it is better to see your doctor and find out what it is.
Freida, I hope this information helps you. If you are ever in the Columbia SC area when we have our support group meetings, please come and join us as a guest. Information about our meeting times and topics can be found on our group website. Please do not hesitate to contact us again with your questions.