Helping Those Who Care for Parkinson's Patients
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| Kind of a dilemma here. More than two years after PD diagnosis (with tremor and balance issues for some years prior) and after seeing a handful of doctors, 2 years on sinemet and continued employment, symptoms like shuffling feet on carpet, hallucinating, have disappeared. Sinemet has worked well and after shaking from dyskinesia became a problem another med added that resolves the shaking. Now neuro sees no tremor after 10 days off PD med. Though I try to be an optimist, I have tried to self-educate about the disease, but after the past few years, the current situation has me flummoxed. And I have no one to ask. We have had little contact with anyone due to pandemic, so no observation by friends or family. Other symptoms remain persistent: sense of smell absent, continued changes in appetite, sleep and balance issues, handwriting is an extreme effort. Does any reader have knowledge of a similar improvement of one or more symptoms? And did the improvement continue or did symptoms return after a time? It seems we learn this disease one day at a time. |
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Hi, My husband had PD for 12 years. He was 59 when diagnosed and fortunately had retired from his main career at age 52. Also besides being a DSW, he farmed 100 acres. After retiring he drove transport truck for 7 years. He became very tired and no energy and through a stress test, the heart doctor diagnosed PD. He went to a Motion Disorder Specialist MDS to confirm it. This was a nero who specialized in Parkinson's and movement disorders. After a year he was put on Sinemet and continued the rest of his life. He never had off and on times and over the years the Sinemet was increased. His Parkinson's symptoms gradually increased so that he was disabled to the point I couldn't look after him and spend the last 9 months in Long Term. I hope I am not scaring you but it's good you are being optimistic. You have to have a good attitude with his disease and not let it get you down. Parkinson's disease is different with everyone so that is why it is so hard to find a cure. It's a progressive disease so your symptoms will be gradual at least that was his experience. The Sinemet helps with the lack of Dopamine in the brain. Tremors are not just the main symptom as you know and I don't know why they doctor would take you off Sinemet if it was helping. I believe you should still be on it for the stiffness. You also need to exercise to help with the stiffness which is part of PD too. When you were on Sinemet, I hope you weren't taking it with meals because if you have protein with that medication, it works against it. I hope I have helped in some way, but this disease isn't fun. Take care. LYNN |
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| Thank you for sharing your husband’s experience. My husband’s progression has been slow, but the symptoms that are present, observed for months or years, then just go away are quite puzzling. This makes me wonder if we’re seeing something other than PD. And that tremor present for years is now not observed, but every other symptom, including pain and stiffness, is still present. I would be happy for someone to explain this to me, or share any similar experiences. But we go forward one day at a time. |
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Hi, Some people think that a person with PD just have tremors but there are so many other symptoms and everyone isn't the same. My husband's tremors weren't there all the time. They came out when he was stressed. My husband never had pain except if he did something where he was bending over, it caused his back to ache. He didn't have pain otherwise. It was the stiffness that progressed PD affect everything I am afraid. He had a difficult time rolling over in bed and as time went on, he would loose his balance and fall, etc. By the sounds of your husband's other symptoms, it sounds like PD. I know it's hard to watch your husband suffer and life isn't the same anymore. It made me stronger because eventually I was doing everything.. I was a caregiver until it became a crisis and I had to put him in a nursing home. Even then I would visit him 3 or 4 times a week. He was only 70 when he passed away. You can just take one day at a time, but if things get too much for you in the future, you need to take a break, like a few hours to do something on your own. I hope you have some kind of support system you can call on at that time. If you need to talk, just put a message on this forum. I'll try to help if I can or just listen..... Take care. LYNN I |
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Seeker, PD is different for everyone. Along our journey, I learned that about 30% of PWP do not have tremors. My late husband was in that group. Our PD looked like this: Early: loss of smell foot drag on one side major fatigue for no reason sore back for no reason stiffness reduced arm swing on one side Years before diagnosis I remember my husband, who was an incredibly gifted programmer, tell me that he "couldn't turn his head off". He was constantly thinking, problem solving, etc. I never in my wildest imagination would have worried about Parkinson's entering our lives, when my husband was in his early forties, no less. Later we developed bilateral symptoms and spams and balance and gait issues, and the host of cognitive issues which were by far the worst. Exercise is THE ONLY THING that they have shown to help. Bike, walk, run, hike, swim, garden, whatever your loved one can safely do to move their body, encourage them to do it. And make the most memories you can, now. Shortly after our diagnosis, we were optimistically told by a PD research center that a cure was five years away. Ha-that was fifteen years ago and we don't even have a drug any better than sinemet. I don't want to scare anyone, but I wish I had known just how fast and precipitous the PD decline can be. Once you hit a new low, there's no going back: so you have to try to maintain function as long as possible. I hope that your loved one's symptoms disappear-who cares why!-never to return. Please keep everyone updated here, as you never know what small thing can help others 
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When my husband was diagnosed six years ago his main symptoms were tremor and gait issues, about equal between those. Once he started medication his tremor was well controlled and the gait was improved but gradually continued to decline (requiring ever-increasing doses of meds) and eventually we decided to pursue DBS surgery. To go through the testing for the surgery, he had to be off meds for two or three days. During that time his gait symptoms came back strongly but his tremor did not return. It was only 2 or three days, not 10 like you did, but I found it interesting that all his other symptoms either were maintained or returned, but his tremor was not in evidence. I don't know if it means his tremor is gone now, or if he quit meds maybe it would come back after a longer time, like weeks or months? I don't know. |
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My mom was diagnosed in 2010 when she started dragging her feet a bit. She had been acting out her dreams (RBD, or "REM Behavioral Disorder") since the '90s, and sometime in the late 2000's her sleep doctor told her it would likely develop into Parkinson's...which it did. . She never really had much tremor, although I have noticed it occasionally during "off" time over the last year or two. It's very rare to actually see it, though. . Her neurologist added Amantadine around 2017, and that helped quite a lot with the dyskinesia from the sinemet. It still helps a little bit, but not as much as it used to. . She's had a DBS implanted two weeks ago, and they will be turning it on June 8th and calibrating it over the summer while weaning her off much of the sinemet, etc. . Long story short, her Parkinson's today presents in a variety of ways throughout the day, and has presented in a variety of ways over the past 11 years. One key piece of information I learned about six years ago is that med changes (not necessarily Parkinson's meds), infection, injury, and/or anxiety can cause Parkinson's symptoms to temporarily worsen. Mom had a bad year or two in 2015-16 with some withdrawal problems caused by some bad advice from a couple substitute doctors, which in turn caused her Parkinson's to worsen in that time. Suffice it to say, the presentation of the disease can be affected by many, many different things, and has rarely been consistent over my 11 years of caretaking. (Another big problem that is difficult to mitigate is having four or five doctors for various ailments that have little or no idea how their new medications will affect the Parkinson's--or anything else that is not their area of expertise--, or what new side effects or interactions will be triggered, or how far down the rabbit hole they go to add more medication to mitigate the side effects/interactions--or worse, another doctor prescribing more meds to counter side effects from another doctor's meds--, which may cause more side effects/interactions, etc. All I know is that at a certain point, mom was on WAY too many medications, and getting her off some of them was extremely difficult, took a lot of time, and even more time to stabilize after that. And every time a doctor wanted to add one more, I would generally say no. For three or four years I had the drugs dot com "interaction checker" open on my computer continuously with all her meds listed. I even gleaned some extra insight by reading the "professional" tab on that website.) |