How are you dealing with fatique and constipation in PD?

Hello @jatonlouise and welcome to the Parkinson's support group on Mayo Connect. Please share as you are comfortable something about your history with PD? Is this a recent diagnosis for you?

As to whether my PD is recent or long-standing, the answer is "Yes" to both. I have probably had it for 10 years, starting with the time I was walking down a side walk one minute and the next minute I was face down on the sidewalk before I even knew I was falling -- didn't even put out my hands to stop my fall because I didn't inow I was falling. I only recently got my diagnosis a few months ago (November 2023). My symtoms were atypical -- mainly I just continued to grow moer and more fatigued. When I fell, I was in the hospital for a week while they checked heart and brain issues, but found nothing. As I continued to gradually become more and more fatigued, my GP did all the normal things - checked me for diabetes. Nope. Checked me for arteriosclorosis/high cholersterol - found a few minor things and gave me something to address high chloresterol.; checked me for high blood pressure, which was a little elevated, so gave me meds for that. Still got worse. Sent me to allergist/lung doctor: had a little touch of asthma, so medicated that; still kept getting worse; gave me a sleeping test and diagnosed me with sleep apnea and gave me a CPAP; still got worse. My GP checked me for POTS and I had a tilt table test. Nope. Kept getting worse. GP sent me t o a geriatric ward for evaluaion; Nope --found nothing. After that, I was hospitalized 4 more times, and evaluated by the neurology departments of 3 different hospitals. Over the past 3 years, I've been hospitalized 9 times in 6 different hospitals. I have spent 180 days in the hospital. Except for the 9th hospital (and the 3rd neurology department to evaluate me), they all ruled out PD. I had no tremors; I had no rigor; I was relatively strong in that I could hold my own when they pulled o my legs and arms. I was so weak that I couldn't even go to the bathroom on my own; my husband couldn't even get to sleep through the night because I would have to go to the bathroom every 2 hours. He had to get me out of bed, put me in a wheelchair, go 15 feet in a decidedly wheelchair-hostile apartment, get me off the wheelchair onto the toilet, then clean me up (becaue I couldn't even do that), put me back in the wheelchair; roll me 15 feet, and put me in the bed. My husband and I are 79. He became beyond fatigued; he was afraid he might drop me and he knew he couldn't keep doing everything - grocery shopping, laundry, cooking, without a good night's sleep, so we decided to ask our doctor for help finding a nursing home for me. He had one more place he wanted me to try - this was the 9th hospital and would be the third neurology department to examine me. They did all the things the others had done (to include psychiatric evaluations in case this was depression --Nope!) The 9th hospital did all the tests the others had done and they were concluding that it was not PD. Then, in desperation, the head of neurology decided to try one last thing -- give me L-dopa and see how I reacted. The doctors came into my room, tested me like always - reflexes, pulling my arms, legs, etc., and then gave me l-dopa. In ONE hour they came back and did the same testing. This time, I could stand up by myself; I could walk a few steps -- enough to go to the bathroom; I could turn around. We were all incredulous at the difference. That's when I got my diagnosis -- Idiiopathic Parkinson's Disease. This was The Charite - University of Medicine Hospital in Berlin, Germany. It is Europe's largest university hospital, affiliated with Humboldt University and the Free University of Berlin. The Charité traces its origins to 1710. A few months after I was in this hospital, I saw the results of an evaluation of hospitals in Europe, and Charite was found to be the 6th best hospital in all of Europe, on a par with , interestingly enough, The Mayo Clinic. This was in November 2023. I was blessed to have been referred to the best neurologist on the planet and have been under her care since them. Initially I was taking a combination of L-dopa pills 8 times a day (including having to wake up at midnight to take a pill).. Because you can't eat 2 hours before, or 1 hour after taking the pill, it was very difficult to juggle this. Since it took so long to get a diagnosis, and my PD went so long without treatment, I now have Advanced Stage PD, and was having to take such high doses of meds that I was having hallucinations. I was fortunate not to have scary ones, like some people have. Mine were simply silly. In addition to the pill schedule being difficult, if you take l-dopa orally, you have to take a very high dosage for it to be effective because the digestive system limits the efficacy of the medication. Again, I was very lucky to have been referred to my particular neurologist because she was on the medical board that evaluated a new treatment for PD, targeted at patients in the advanced stage for whom the oral l-dopa loses its effectiveness. This is the ABBVIE subcutaneous pump, which: (1) can provide a constant level of l-dopa in the patient, rather than the waxing and waning level ttypical of using oral medications ; (2) can deliver the same results as oral medication, but at a lower dosage that diminishes adverse side effects that come with the higher doses of oral medications; (3) Because the medication is provided subcutaneously and does not go through the digestive system, it is not necessary to restrict eating before and after taking the medication -- patients can eat when they are hungry. The pump was approved for use in the European Union and went on the market on January 9, 2024; I got my pump on Febuary 9, 2024, and am continuing to become stronger and to have a more normal life -- going to the bathroom on my own, and tending to most of my personal needs (although I still need help taking a shower) and going out to dinner with friends, which I couldn't do for several years, for example. Unfortunately, the Federal Drug Administration has not yet approved the pump, so there, again, I am lucky to live in Berlin. And, no doubt, I got my pump earlier than most because of my neurologist's awareness of it and her involvement with the medical board.

Thanks for filling in some information about your history with PD, @jatonlouise. I can see that you had quite a journey before getting to your PD diagnosis. For many of us, me included, I didn't have many of the obvious PD symptoms and still after many years do not experience tremors.

The neurologist who finally diagnosed PD, suggested that I start taking carbidopa/levodopa to see if it would help my symptoms. I really noticed a difference, so the diagnosis was PD.

I'm glad to hear that the pump is working so well for you. Were the benefits seen soon after you started using the pump, or did it take a while?

"Becoming one with the pump" is a process. BTW, since he is with me always, I have given him a name - Kumpchen - which means Little Buddy. The first step takes place in the hospital, where they can monitor/change your l-dopa dosage until they get something that seems to work for you. The first step is to take you completely off l-dopa. This was a brutal experience for me, since I had felt so horrible before and had gotten relief from the pills, giving up and returning to the torture was not pleasant. But necessary -- they need to find out how bad you are when you're totally unmedicated. This lasts a day or two. Then they bring the pills back, gradually, seeing where they "sweet spot" is - figuring out where they become helpful and what amount is too much, just to calibrate your d osage of Produopa (the med in the pump). That takes another couple of days. There's not a one-to-one ratio between what you needed in pills and what you need in the pump. Certainly someone taking ten pills a day would need more than someone taking 5 pills a day, but it's not as simple as just doubling the dosage, because with the pump you don't sacrefice any l-dopa to the digestive process, so (just notionally) someone taking 10 pills a day may need the 80% of the amount for the med in the pump (which is Produodopa). So they come up with an estimate on what you'll need and they give you different doses, and set your pump and send you home into the care of your neurologist to fine tune the dosage. Once you get home, you may need a higher dosage because you are probably more active at home, so you need more "gas in your tank." The dosage set in the hospital is just a start. Some of the dosage you can control yourself; others your doctor controls, specifically:
There are 4 levels of dosage and your doctor sets the levels specific to each. The first level is the BUMP - think of it as getting a cup of coffee in the afternoon when you're running out of energy. You can take up to 5 bumps a day and you have to wait 2 hours before you can take another and the pump tracks this and won't let you take too much. Then there are 3 more levels: LOW is the level you should use while you're sleeping; BASE is a bit higher and is the level you should use during the day. HIGH is a bit higher than BASE and is there to give you flexibility for longer periods of time than the BUMP. For example, if we are going out to dinner, then I set my pump to HIGH and then turn it back to BASE when we get home. In addition, you can continue to use Madopar-LT (up to 3 times a day) and, depending on your situation and your doctor's advice, may still integrate some of your pills with your use of the pump. Basically, the doctor controls the dosage for each level while you control when you want to go from one level to another. It's important to make only one change at a time so you can tell whether something works. For example, if you felt that your BASE setting AND your LOW setting were both too low, just raise one of them, see how that works, and it it's not enough, change the other one. It's important to take the lowest amount of medicine that works for you. It also helps to keep a log whenever you're having OFF episodes to see if there's any consistency in when you have them, or what you're doing on days that you have them. (e.g., if you only have them when you stay up past your bedtime, that's useful information. (or when you have to deal with your least favorite person 😉

I have had my pump for 3 months and the only oral med, I take is LT, which I take when I wake up because I'm still trying to fine-tune my LOW setting and after 8 hours at LOW, I can wake up feeling OFF and the LT lets me play catch up. At my next doctor's appointment, I will ask to have the LOW setting raised just a bit to see if it can get me through the night without needing LT. I had it raised at my last appointment and think I need it just a tad higher.

The one change that occurred immediately when I was hooked up to my pump was that I could eat whenever I wanted -- I didn't need to fast 2 hours before and 1 hour after taking pills. With the morning LT, of course, I already had been witout food when I wake up for more than 2 hours so the only dietary restriction was waiting an hour after the LT to eat. Lots easier that doing that when you're taking pills 8 times a day. While I was in the hospita, I felt fine right away (except for when I work up in the morning). In the trial that ABBVIE ran before it was approved, they found that patients on the pump experienced a little over 2 hours less OFF time every day than patients taking the oral meds. My experience has been better than that. From February 9 until today (May 17), I have experienced maybe a total of 4 OFF episodes, each of which were remedied within an hour after taking LT. Also, 2 of those OFF episodes were self-inflicted: in one case, I took a shower and forgot to turn my pump back on after I finished. It took me 4 hours to realize why I was feeling so rotten; the other time, I had THOUGHT I had turned my pump from LOW to BASE and instead I had turned it off. I woke up at about 3 am and intended to change my pump back to HIGH but in my sleeping stupor, didn't hit the right buttons and unintentionally turned it off instead. SO, in a period of 3 months and 1 week, I have experienced only about 4 hours of OFF time (NOT counting those 2 self-inflected OFF periods of about 6 hours total. It's very nice not to have to divide my day into 8 parts and remember to take my pills (with my long-suffering, beloved husband having to wake up at midnight to give me a pill) and having to juggle meals around the dietary restrictions. This has made a vast improvement in my life. It's kind of hard to arrange to go out to lunch with friends and schedulilng it around your 'feeding availablity'. "Can we have lunch on Sunday? You can pick me up at 10:15 and I have to have my lunch served at exactly 11:05 and if there's any delay, I can't eat, but will be glad to have just a glass of water while I watch you eat"

It might be useful to have a blood test. My neurologist told me that even minor infections can cause extreme fatigue in PD patients, which would come
and go without any effect in folks without PD.