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DiscussionHow are you dealing with fatique and constipation in PD?
Parkinson's Disease | Last Active: May 18 11:43am | Replies (35)Comment receiving replies
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.
Replies to "As to whether my PD is recent or long-standing, the answer is "Yes" to both. I..."
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?