Marlene Donnelly
Forum Replies Created
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I forgot to check the box saying Notify me of follow-up replies via email, so I am doing that with this note!
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Talk to your doctor about your meds, relax, and have a good time! My husband and I have traveled to Europe a couple of times since I was diagnosed. I was very worried the first time, until I met another traveler with PD on the very first day, causing my confidence to be restored.
The most important thing is to pack your meds very carefully and make sure they stay in your carry-on. Whenever we travel, I pack my meds about a week earlier while I am relaxed, and I take extras of everything. After that, the rest is easy (because I have lots of medical conditions – all under control – I am on about 20 prescriptions!)
I have no trouble falling asleep, so whenever we are touring, I sleep as we ride from one place to another. My plan is that I will stay behind if I am not up a particular part of the tour. I can do less and still have a good time; getting upset about it won’t be good, so I always have my Kindle with me. Come to think of it, I did have two occasions when I decided to not join the rest of the group. I got to talk to some very lovely, interesting people as I waited in cool, comfortable spots, having my own very pleasant times. My husband and I then were able to tell each other about our experiences later in the day.
I will be thinking about you in late September. That’s when my husband and I are planning on traveling by car from NJ to CA and then back, with lots of stops along the way. We expect this to take about a month, and I have no idea how it will work out! This is something my husband has been wanting to do since the pandemic, and my neurologist gave me the okay for it.
Write here when you get back. I’ll do the same. Looking forward to hearing about your trip!
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Kathy and Katherine: As to the PD and Fibromyalgia combo, yes, a number of symptoms are involved with both conditions and tend to make them worse.  When I first saw my neurologist she told me that I have both. I really should have realized that I had fibro years before I was diagnosed with PD because both my daughters have suffered from it for decades.
John: I find it interesting that you no longer have a cat but still smell litter box smells, and I have a cat and can’t smell litter box smells. I clean the box very regularly because unless someone tells me other wise (which sometimes they do!), I have no idea the litter box has been used.
It also occurred to me how important sharing this info can be because there are people who have no idea that some of these are actually PD symptoms and might blame the symptom on something else. An example: Two years ago I was diagnosed with breast cancer (I was very fortunate that it was caught very early and was at Stage 1 Grade 1!). After surgery and radiation I was told that I would need to take the drug Anastrozole for the next five years. Well, coincidentally (or maybe not), that is when I started to suffer from that awful sweating. I told my oncologist that I was having trouble with this side effect of the medication (thinking hot flashes), and he asked me to please stay on it; that it was really necessary. Luckily, I found an article about the PD sweats right after that, and the description was in such detail and matched my experience so completely that I could see that I was not in fact having hot flashes and could take the meds without concern.
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I taught classes from nursery school through 8th grade over the years. Actually I hardly ever raised my voice in class. The quieter I spoke the quieter the kids were as they listened to me. I loved what I did!  It’s just that in my dreams, the kids and I are always involved in some big project that takes a lot of space and I have to raise my voice to be heard over the distance. One time my husband said he was in our bedroom when I went into one of these dreams, and not only did I yell something to the kids, but I also started pointing in all directions. He found that very funny.
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Jennifer, like you, there is nothing to indicate that my head itches, but it most certainly does!
Katherine, to answer your questions: 1. Yes, I hate the feeling of the tremors in my core! It is much more bothersome than those in my right hand. Sometimes they make me feel like I am having a panic attack. 4. The yelling in my sleep doesn’t wake me up. It invariably happens after my husband has already gotten up in the morning, and he hears me from the other side of our house. I taught for 34 years, and these dreams are always about teaching. I may be in the gym and calling to kids at the other side, or we are outdoors and I yell to someone on the other side of the playground. They are not violent dreams, but they are very vivid and many times very pleasant. Sometimes I am aware when I wake up that I have been yelling, and sometimes that’s not so.
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Besides PD I also have Fibromyalgia, so my symptoms can be from either condition. When my meds are not on I have tremor on my right side and an internal tremor in my core. I have muscle pain throughout my body. I have difficulty with digestion. Fatigue is frequently a problem though I sleep great at night. I yell in my sleep. I take meds for depression and anxiety. I randomly have Dyskinesia in my right leg. When I am standing I am often light-headed. When I am tired my right leg tends to shuffle and I may have double vision. I can only focus on one thing at a time, and my processing time is a bit slower than it used to be. I don’t have a problem smelling foods; I can’t smell poop :). I occasionally have phantom smells that are often very pleasant. My head is often very itchy. When doing an activity that takes awhile, like food shopping, I perspire profusely from my forehead
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I was diagnosed with PD 12 years ago. Three years ago I began feeling dizzy, this only happening when I was riding as a passenger in a car. I didn’t think much of it for months, but since it seemed to be getting worse, I had it checked out by a cardiologist who did not find anything wrong. He did ask me to keep a record of my blood pressure and pulse rate, and we found that my pulse at times dropped quite low. I was hooked up to a monitor, which I was expected to wear for a month, but four days later my cardiologist called me and said to get to the closest hospital (I was in fact out of state on a trip) because my heart had stopped that morning for a short amount of time and he wanted me to get a pacemaker implanted ASAP. The monitor also noted heart arrhythmias. I mention all of this because I too believe that PD plays a part in this and probably many other heart conditions, even if nobody yet understands exactly why. And yes, I also experience chest pain that nobody has been able to explain.
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I will definitely take whatever vaccines and boosters come my way, be it for COVID or anything else! Why? I was always the sickly child, and even as an adult, if there is something to be caught, I catch it (I’ve had COVID twice so far). However, since I always avail myself of any protective measures there are, I’m still alive and kicking at almost 76. Getting the COVID vaccines and boosters doesn’t mean you can’t get the virus; it means your body is in a better position to fight it off if and when you do get it. Get it?
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Hi Omer,
Your dad’s experience mirror’s mine oh so much! I am also 76, was diagnosed 11 years ago, and have done pretty well with PD, my symptoms not great but neither really disabling. My husband and I got home from a trip to VA (we live in NJ) to visit our daughter and family. Within 24 hours my husband came down with COVID. It took me three more days to join him. Our 10 day symptoms were also flu-like and were gone about two weeks ago. To my dismay, last week I started to see that each day I was becoming more and more fatigued. We had some pleasant activities to which we were committed last weekend, and I made it through them, but the effort to do that was way out of proportion to what it should have been! I have always slept well and continue to do so, but that has made no impact on the level of exhaustion I feel. I can also add a couple of hopefully helpful comments besides being able to commiserate.
1. This is my second experience with COVID, and the same thing happened to me last time with regard to exhaustion a couple of weeks afterward. I think that lasted for about a month and then things started to improve. So there is hope for improvement for both your father and me! Also, Sherman (the last participant) is absolutely correct about any trauma being reflected in a temporary worsening of PD symptoms. After 11 years and a number of other health situations, I can vouch for that!
2. I have only ever taken carbidopa/levodopa for my PD, and am usually very happy with how it works, but right now it is not providing me with as much relief as usual. I think this also is usually the case when there is any trauma to the body. I would recommend it for your dad, but not as an immediate fix.
3. I have been on a very low dose of an antidepressant for about 10 years, and I think that has been very helpful. Last year I became exhausted for no apparent reason. My neurologist said that she was increasing the dose of my antidepressant, not because I was depressed, but as a way to give relief for the exhaustion. Within four days it was like someone had turned the light switch from off to on! For me the antidepressant that accomplished this was Venlafaxine, generic for Effexor, but everyone reacts differently to antidepressants. When I told my neurologist about this unexpected success (at least from my perspective), she grinned and said, “Apparently that’s what your brain and body needed.” Perhaps if this approach was taken by your dad’s neurologist, rather than focusing on depression, your dad may be willing to try an antidepressant.
4. With regard to a non-PD med to help your dad, I have to ask if he is taking any kind of exercise class? If not, he really should look into this. I know that depression and apathy make this harder, but it is so important, especially when dealing with these symptoms. I have been so fortunate that my local hospital has wellness classes for seniors. Before COVID they were in-person, and now they are on ZOOM. I took T’ai Chi first because it helped me with my balance. Over time I added a Chair and Standing Yoga class and an Arthritis Exercise class. I don’t have arthritis, but the class works for me anyway. The activities can be adapted to meet my needs, they are fun, and they really do help. Since I started each of these while they were in-person, I got the social benefit of meeting new people, which was great. Lucky for me, we have been on break last week and this week, but next week, no matter how I feel, I will be doing a class on Monday, Wednesday, and Friday. By now I don’t think about whether I can do it; if there is a class, I just do it because everyone expects to see my face, even if it is only on the ZOOM grid.
Best wishes for your dad’s increase in energy and positive attitude! Also, thank you for sending this just when you did. I guess misery loves company, but reading your letter and answering it reminded me that better days are ahead, I don’t have to feel guilty for my lack of accomplishing much during these tough days, and none of us is really alone with our symptoms.
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Gil Williams, your wife is a lucky woman, as am I. I was diagnosed 11 years ago, and my husband has been my rock. He knows that my appetite is not what it used to be and I tend to get tired by late afternoon, so he has taken over the job of preparing dinner on a regular basis, Since he is by far a better cook than I am, we both benefit with his delicious meals! Otherwise he lets me decide what I can and cannot do, which will vary from day to day. I need to speak up and tell him if I need help or need him to do something, but whatever I ask of him, he does. With those conditions in place, we then just go along and live our lives, having fun and focusing on what’s really important like family, friends, and activities that make us useful and happy.
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I know the majority of people with seem to have difficult sleeping, but that is not my experience. I was diagnosed over 11 years ago, and I sleep through for 8 – 9 hours of solid sleep almost every night. I am a night owl, so I rarely go to bed before 12:30, and if I’m reading a good book, I may be up until 2:00, but then I will sleep until 10:00.  I feel extremely fortunate that this works for me, and I have no doubt that my past success in falling asleep very quickly and sleeping so well is part of the reason that I continue to do so. I am very relaxed when my head hits the pillow.
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My husband and I have a 16 year old tuxedo cat named Zach who rules this house.  We have had cats during most of our 53 years of marriage and have always felt we get so much more from our cats than we give them. We love Zach to pieces, and I have no doubt that being Zach’s maid only helps with my PD. If I’m feeling fine, Zach makes sure I do all of the things that need to be done for him. However, if I am having a rough day, he is there for me, giving love and attention like a caring nurse.
I have also volunteered one evening a week at my local (no kill) animal shelter for their kitties since 1994. Going there each week is the best! We usually have anywhere from 8 to 20 kitties, and my job is to feed moist food, make sure there is enough dry food out, refill the water bowls, clean the litter boxes, straighten up, and give love to the kitties. A friend of mine usually comes with me, and the shelter managers know I have PD and on very rare occasions I may need someone to fill in for me if I’m having a really rough day. Sometimes I come home exhausted, but it is worth it because I always come home happy!
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Though I haven’t taken PD fitness classes, I have been taking T’ai Chi, Yoga, and Arthritis Exercise classes, all geared for seniors, and all have been a help. None are back in person yet, but they all are on Zoom – same instructors at the same times and days. I use my guest bedroom for these classes, and have been able to keep going throughout the pandemic.
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My first comment is to Krukar: Have you tried a class of T’ai Chi (yoga helps too)? I have had PD for 11 years. I often fell during the first couple of years but then took a T’ai Chi Chih class because I read that it could help. Since then I have hardly fallen at all! I rarely lose my balance anymore, ans when I do I am able to catch myself before actually falling. I strongly recommend it!
Now for the silver linings of PD. For me there are definitely two. The first I have called my Parkinson’s Perk for many years. I have lost my sense of smell, but not to food. I can’t smell poop! Dog poop, cat poop, baby poop! I may be a loving grandma, but everyone knows not to depend upon me to know when a diaper change is needed. Same with the litter box for our two cats. On the other hand, if the smell is so horrendous, my family comes to get me because I can do the cleaning up with a minimum of problem since I can’t smell it.
The other silver lining was pointed out to me in a class I have been taking on mindfulness. There has been a lot of discussion on how everyone is expected to multitask throughout the day. I have NEVER been able to multitask, but now I just say, “Sorry, I have PD. One task at a time is all I can do.”
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I have found that caffeinated mints (comes as gum too) help. Drinking a cup of coffee bothers my stomach, but I have no problem with these. I use the Viter Energy brand that is online. Their sample pack is inexpensive, and once I found I liked them, the offers available make the cost of these mints very reasonable.
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I have multiple illnesses, some I feel are somewhat related to my PD and others not so. I also have Fibromyalgia, and I think there can be a connection with these two conditions. I am never sure which of the two causes the pain I experience; I’m assuming both contribute. I also have a pacemaker because without it my heart rate dips too low, once stopping completely for enough seconds to scare my cardiologist. I think this can also be related to PD. i have had asthma since I was a child, so I don’t see a connection there, and I have also had breast cancer (invasive ductal carcinoma), for which I don’t see a connection to PD. In general I feel fortunate that even though I do have multiple illnesses, see many different doctors (happily I like them all!), and take 20 different medications, at least I can still live a fairly normal life (I am 74 and have PD for 11 years), with many very pleasant days, filled with friends, family, and activities that are both meaningful and fun. I don’t focus on the tougher days but consider them the payment for all of the good still in my life.
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I dream often. Most are pleasant, but maybe once every other week I have what I call a PD dream. They are always related to teaching (I taught happily for about 33 years), and always cause anger and anxiety because things are going very wrong. I NEVER had the problems in real life that I do in my dreams! I wake up exhausted, and frequently my husband says that I have been yelling (as a teacher yelling was never my style!) They are very detailed, and I remember those details when I wake up.
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Temperatures above the high 70s make me feel sick – nauseous, light-headed, and very uncomfortable. Before PD this was not the case. I spend most of my days from May until October indoors with air conditioning (we live in NJ). I am also less tolerant of cold than I used to be, though that’s not as bad as the heat. In the house I keep the thermostat at 72 degrees in winter and between 74 and 76 degrees in summer.
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I completely agree with the three comments above! I think it is very important for others to understand the variability of PD. Each person’s journey is different, and for that one person we focus on, the journey for that person is also extremely variable. One day (or hour!) may be very different from the next. I choose to consider PD my adventure. I never quite know what is in store for me. That can be positive as well as negative; if I am having a bad day, I know that tomorrow may well be wonderful. The non-motor symptoms give me more trouble than the ones that are visible, so I think I would want someone who does not have PD to believe us when we say we can’t do something on any given day, even if we were able to do that yesterday and may again be able to do that tomorrow. I am blessed with family members who understand that, making it much easier for me to take each day as it comes.
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I never thought of this as a PD problem. Like you, Charles, I have many health issues and lots of daily medications. I was diagnosed with PD over 10 years ago, and for many years this was also part of my reality. Even had to have a plumber in on one occasion. The plumbing solution was to find a very long shoehorn and slice up the stool (of course then scrubbing the shoehorn squeaky clean!). Happily for me, my digestive system has changed and I no longer have this situation.
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I have been taking virtual exercise classes since last spring, when the exercise classes (yoga, t’ai chi, general exercise) I had been taking at my local hospital stopped having our regular classes. These classes are given by the same instructors at the same time as we had previously had our classes, and I find them to be excellent. I also have been taking chair yoga and t’ai chi classes from our local library (these are free, the ones from my hospital are $5 per class), and I also enjoy these very much. I have set aside one room in my house for these classes. The materials I need for my classes are right there, and going into that room puts me in the frame of mind that I am actually going to a class. I have had PD for over 10 years, and I have been going to classes for at least the past eight years. They make a huge difference for me. I NEED these classes!
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Shelly, I also have chest tremors on occasion. mine are not as bad as yours – my entire torso does not vibrate, and they have never woken me up – but they definitely are disconcerting, much more so than the tremors in my right hand.
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I was diagnosed with PD about 10 years ago and am 73 years old. During the first couple of years I had a couple of really bad falls. Then I signed up for a T’ai Chi class at my local hospital. That helped me focus on the steps I take, first starting on the heel and moving toward the toe. What had been happening was that I was putting my whole foot down at the same time when I took a step, thus stubbing my toe into anything not perfectly flat, which sent me flying. The class has made all the difference. First of all, I love my classes (now I take t’ai chi and yoga – either from the hospital or from the local libraries – the more I can find, the better!). They are fun, and now they are on Zoom so I can safely do them from home during the pandemic. Secondly, since I began taking my first class, I have not fallen again, and that was years ago.
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Carol, you expressed how I feel most days, except I don’t have the lower back pain. I do understand how you feel! I went to get my hair cut today, then went to the bank, the library, and went into one store for one item. I came home exhausted, which is ridiculous. I napped for about an hour and a half, and now I can go on to other things, but it is very frustrating to not be able to do a couple of easy, non-strenuous and even pleasant tasks without being worn out.