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Invisible Symptoms of PD

  • By Chris H. Keymaster

    Which invisible PD symptom do you wish people would see and understand? We want to hear more about your journey with the unseen difficulties with PD.

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  • By Courage

    It would be great if people just knew I had invisible symptoms. People don’t even know. There is such a lack of knowledge regarding PD. So I walk around with constant muscle pain acting as if I feel as good as everyone else. If I mention the invisible symptoms then I risk coming across as a complainer or attention seeker. If I don’t mention them then I give the impression that all is well. Even with this dilemna, I don’t wish to add any invisible symptom to the visible symptoms list-it’s long enough.

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    • By Chris H. Keymaster

      Thanks so much for your input on this topic, Courage. We’ve heard commentary from other community members stating that they have had similar experiences. Our contributor, Michael, wrote a great article surrounding how he’s been told that he “doesn’t look sick” here: https://parkinsonsdisease.net/living/but-you-dont-look-sick/. Thanks so much for being part of the community! – Chris, ParkinsonsDisease.net Team Member

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  • By semjsimeroth

    Invisible symptoms are a problem; others just don’t get it. I have been through a realization recently. I finally have come to grips with “I have Parkinson”. This has caused me to really look at how OTHERS see me and be more aware of their views and reactions and how I can do things (get a walker, use it, talk to them before u. Others don’t see or understand what they see without us explaining it to them, if they’ll listen. Knowledge IS power! No one knows when we freeze or start to tremor when were going down a hallway, in an elevator, or trying to get change or cash out to pay for something. They don’t understand we have no control and the more we “try” or worry about it, the worse it gets. Stress is a real big invisible symptom we struggle with as well. When friends don’t want to give me a ride anymore, it may very well be they are afraid of you falling, and not being able to help you up. Or if you have fallen in a parking, bumped your head and an ambulance has to come and you end up in the hospital (a real story for me!), this person might not be as eager to come and give you a ride, not may your other friends . We meed to acknowledge the possibilities of things happening and help our friends help us with these symptoms.
    I hope this helps . . . it has helped me with “keeping” friends! Thanks for “listening”!

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  • By DIANA52

    I agree with everything I just read I’ve been thru all these situation sometimes I feel it’s useless to try to explain what is happening to me because no one really listens,actually I’ve givi g up on trying to educate people I come in contact with because they really aren’t interested so why waste my time

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  • By Leslie

    Thank you so much for sharing everyone. It makes me feel not not quite dio all alone, in reality I am. This is just the beginning of muy journey and already I can relate. It’s hard to explain to family and friends that you’re not, and never going to be the person you were ever just a year ago. The organic fatigue, I like to call it, that sleep doesn’t help. Then there’s the apathy that makes you want to stay in sweats in your recover watching HBO all day when you should get up and do something. How going out to eat or to a party sounds good until the date comes around and you just don’t want to go! Then there’s how difficult it is just to make a list, get ready and go grocery shop. No one wants to hear it, they don’t get it. I fell lime I’m forcing my rigid, sore muscled body through water everywhere I go.

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  • By Courage

    We need a “like” button. Stivy56, you make many great points. I think some of the unseen symptoms seem benign to people. Like sore muscles? Take an aspirin. Fatigued? Take a nap. What they don’t understand is the magnitude of the symptoms and a pill and a good night of sleep (whats that????) isn’t going to “cure” us.

    Most people pretend to be sick. We pretend to be well.

    I have one friend who likes to tell me he doesn’t believe I’m sick that I look fine. I know his motivation is to make me feel good but it frustrates me. Once he told me he thought it was all in my head. I said “You’re Right! That’s exactly were the problem is”. The last time he said something I just told him “Spend a day in my body and you wouldn’t say that”. He said “Really?” Like maybe he was finally getting the point.

    How do all of you do with making decisions and prioritizing? I needed to pick either beans or tomatoes. I knew I wouldn’t have the stamina to do both. Guess which got picked? Neither. Haha. Sometimes we need to not be hard on ourselves and laugh some things off. In this case, the next day I did get both picked.

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  • By Leslie

    Courage, boy I can sure relate. I read an article by a young onset gal that summed it up when sombre days she feels artificial and that she’s living in a facsimile of her own body. I couldn’t agree more. Then there’s the thought processes….. Anyone else have a movie reel running behind thethe scenes in their mind? And how ’bout those vivid dreams where you wake yourself up with your own, loud dialog! I often scare my dog into the living room sulking away giving me strange looks. It’s very difficult to describe to others what it feels like to go for days with little or no quality sleep.

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    • By YahYah

      Ahh yes, the dreams. Sometimes I can remember my dreams other times not. I sleep the sleep of the dead. Deep and long. But I also entertain my family with loud piercing screams. Raucous laughter. Throwing myself out of my bed. Hallucinations are not scary (yet). I see my cat sitting on my bedpost giving herself a bath or various family members reaching out to me in loving ways. I guess I did have two nightmares that caused me to throw myself out of bed and hurt myself. My poor husband is wondering how on earth I can sleep for 12 hours, get up for a few minutes then go crawl back in bed and fall back into a sound sleep.I went on a short trip to Walmart and was nearly in a physical state of collapse upon returning home.

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  • By Courage

    Stivy56 I don’t know why I haven’t acted out dreams in a few months now but I had a couple months where I was having nightmares every night. I’d wake myself up yelling and acting out the dream. If you don’t already, try sleeping on your stomach. That helped me. Sleeping on my back made it worse. Have you tried melatonin to help you sleep?

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  • By Leslie

    Courage, yes, just started melatonin. I wear a brace on my right foot for plantar fasciitis which is fun to try and sleep with period so that doesn’t help. That acting out dreams is crazy isn’t it? I used to wake up frightened thinking someone was calling my name but I realize now it was me. I hope so anyway!

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  • By Karl Robb Moderator

    Having had Parkinson’s disease (PD) for over half my life, I can say that it constantly tests you.I have spent many years tweaking my medications, altering my diet for the best absorption, and trying to reduce the symptoms of PD. This illness is unique for each individual and because no 2 of us are totally alike, the wide range of symptoms can be at such varying degrees. I have met people with no physical issues related to the disease, but mentally, they had bouts of depression, anxiety,stress, and some confusion. Unless you live with someone who has PD, the invisible symptoms of PD can be wide ranging, from constipation, gastrointestinal discomfort, panic attacks, stiffness and rigidity, confusion, inability to multi task, difficulty making decisions, possible urinary issues,difficulty sleeping, poor eyesight strength, swallowing and saliva issues, foot cramping/dystonia, are just some of the symptoms that some of us may be dealing with, but few others may be witness to.The list is extensive and variable.Even if you constantly try to educate those closest to you, you can’t always expect them to understand. After many years of explaining that dyskinesia is a side-effect of my medication and not PD,it took many years for me to finally be understood. It’s really difficult to get those who don’t have PD to relate.It can be very frustrating! Karl Robb, ParkinsonsDisease.net CommunityTeam Member

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  • By Leslie

    Karl Robb, you are such a wordsmith! You eloquently put dio much of PD into understood context. My invisible symptoms are much harder to control than the tremor any day and yes, so hard to explain to non Parkies.

    This weekend is a big friesian horse show that I’ve planned inn going to for months. Motel procured, route mapquested and printed. My suitcase is on my bed and I’m stuck. What do I do first, second, ooh, yes, then there’s packing for my dog……. yikes! I’m doing this all by myself which ous NOT new for me as recent as last year but it seems all new now!!!

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  • By DIANA52

    Invisible symptoms of PD has anyone had any trouble with their eyes I love read in, usually read at least 10 books a month but for last 8 weeks I’ve seen halos my words dispear I feel like my glasses are smeared with mmayonaise I finally gave up and went to see my eye Dr she wasn’t very nice which was out of character for her I reminded her I had pd and ask if this was associated with the disease after exam she said it was try eyes due to not blinking she said just blink more and told me to use eye drops 4 times a day I’ve used restatis in the past and ask for a new script she said no insurance company likes for you to try over the counter first and since you are coming in next month for the Oct test due to having RA and taking plaquenil I have to have yearly exam she said if your still having a problem we will discuss restatis at that time well I’m not any better haven’t been able to read all month I think she was having a bad day and I got the brunt of it anyone eles having this problem

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    • By JennPatel

      Hi DIANA52 –

      Thanks so much for reaching out, and I’m so sorry you had that rough experience with your eye doctor! I thought you might be interested in this article as there’s a bullet about vision problems associated with PD: https://parkinsonsdisease.net/symptoms/non-motor/. Additionally, many people in the community find it helpful to get a second opinion from a different doctor if they’re not satisfied with the care from the initial one – I figured I’d share that with you in case it applies to the situation with your doctor that you seemed (rightfully!) unhappy with… please do keep us posted on how you’re doing! Thinking of you!

      – Jenn (ParkinsonsDisease.net Team)

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  • By Artdeli45

    As the symptoms seem to progress…seems futile sometimes to explain jow this all affects my every day routine. I am generally a very active perdon and super positive…but with so much j happening so fast…it is sometimed overwhelming. Friends are in denial or dont even ask h o w I am.doing. dont want to go through it all …may be they are overwhelmed aldo. One friend ssys its probably lyme disrase. And other says tell my docyor to check out s o me other disease. Never deal with what is obvious . others say itd only getting older…everyone our age had thedr eyptoms. Always getting comments.like. “you look so good” . i guess i dont look the part. So. Eventually they will get it! Thanks for listening

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  • By noogarick

    Hello Everyone. I’m new to the group, just now. I’m 54 and overall healthy yet it wouldn’t hurt to shed a few pounds. Diagnosed 2 years ago with all the common characteristics…..fatigue, shuffling feet, sleep disorder, right hand tremors, etc. As for the invisible symptoms, you all seem to nail them. I took Mirapex the first year after DX. Seemed to work but feet were numb and then suicidal thoughts started popping in my head so I switched to Sinemet and began taking health and diet more seriously. All is good if I take my meds 3X a day (2 each 25/100 tabs), otherwise I do get a very slight tremor in right hand. I guess I’m lucky for now as many PD warriors have more extreme symptoms. I do get toe cramps and curling sometimes and muscle joint aches for no apparent reason but I try and work it out. I have a loving wife that helps me thru the occasional off day and fortunate to be able to hopefully work until I’m able to retire in 5 to 7 years, GOD willing. Friends and others really don’t understand PD and after I let people know I would get “I’m so sorry to hear that” and actually have had some people just disappear from my life. I was never looking for sympathy just wanted to be honest and open. Sorry for rambling, but I am thankful to be part of the group and hope I can help others with what I know now and look forward to continuing my education thru others like yourselves. Thanks.

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    • By Chris H. Keymaster

      Welcome to ParkinsonsDisease.net, noogarick! We’re really glad to have you in the community. No need to apologize–we encourage ranting, rambling, and venting all the same! It’s great to hear that you have the support of your wife through this journey and that you’re taking your health and diet more seriously. This is a great attitude to have. Please let us know if we can help you find any information. Thanks for taking the time to share! – Chris, ParkinsonsDisease.net Team Member

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  • By lovetobake

    Hi all, I am new to this group and am so glad to talk to those who know what pd is really like. I was diagnosed 9 yrs ago but had symptoms 2 yrs prior. I worked until 5 years ago. I hate the invisible symptoms most because they are the ones that have most changed me and interfere with my life. I was always independent and did everything myself like painting, cleaning, moving furniture, etc. I absolutely love to bake and did quite often. I am not ready to give up on this stuff yet, so I act like I’m fine even when I am so not fine. Off periods are difficult and especially hard to explain when a minute before, I was fine. I have to hold it in when someone tells me I look totally normal I know it’s a compliment, but when you just want to sink into a chair when your body is totally spent, I want to give up . Do you ever lack the energy to even open your mouth to speak? I can put up with tremors and even slow movement, but the exhaustion and rigidity during off times is bad. My husband doesn’t understand that I can’t do what I used to do anymore. We will be married 40 years in November and he is a wonderful guy, but I think he is a little afraid of me becoming less capable and losing who I am. I admit that I am, too, but I can’t cope with his problems with my disease as well as my own right now. I apologize for sounding so glum right now. I am usually a pretty upbeat person. Just had to vent, I guess. Thanks for allowing me to do that!

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    • By KellyW Moderator

      Hi lovetobake! Thank you for sharing your thoughts. No need to apologize for venting or feeling glum. We have all been there and that is what this community is for – support. You are not alone! I guess I have a few questions. Do you see a Movement Disorder Specialist? They are Neurologists that are specifically trained to manage Parkinson’s symptoms and offer a higher standard of care. If you do not, here is a link to find an MDS: https://www.partnersinparkinsons.org/find-movement-disorder-specialist#

      Have you discussed your level of fatigue with your doctor? Sometimes a change or addition of medication is necessary. Depending on your doctor’s response, you may want to ask about having a sleep study done to determine if something is disrupting your sleep. Sleep problems are very common in PD.

      Do you attend a support group? I highly recommend going. It is nice to meet people that are facing similar issues and understand what you are going through. Most support groups are for patients and their care partners (should they choose to go) and some are just for care partners. It may help your husband understand the disease and get advice from others. If you do not know of a local group, you can ask your doctor’s office for a recommendation. You can also call the Parkinson’s Foundation helpline. They keep a list of support groups across the nation and offer many other excellent resources. http://parkinson.org/find-help/helpline

      I totally understand feeling like you have to be the strong person and say you are fine when you are not. Even the smallest of tasks, on a bad day, can seem insurmountable. I consider myself a pretty upbeat person as well, but sometimes the world gets to be a bit much. The best advice I can offer is do what you love when you can. Bake your heart out on a good day and eat what you made on a bad day 🙂

      I hope this helps. Please feel free to write back with any questions, concerns, vents 🙂 We are here for you.

      Regards,
      Kelly, ParkinsonsDisease.net Team Member

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  • By lovetobake

    Hi Kelly, Thank you so much for your reply. It really helps to know that someone does understand. Yes, I see a movement disorder specialist. I am happy with her treatment suggestions. She is the 4th neuro I’ve seen since diagnosis and I feel she listens to me.

    Regarding sleep problems, I had a sleep study done several years ago, and they diagnosed me with mild sleep apnea. I wore a cpap for a while but couldn’t tolerate it. My problem is that I can go to bed exhausted, but as soon as I start thinking about things, I am wide awake. It isn’t every night, and I know that sleep disorders are common with PD. My total exhaustion when I can’t even talk is mostly when I am experiencing off times. Once the meds kick in again, I’m ok.

    I have gone to a support group in my area. It is helpful but I don’t go as often as I should. I think it’s because when I first started going, I was doing well and I couldn’t see myself in the others. Now that my PD has progressed somewhat, it’s a little disturbing because I see me in everyone else and I don’t like it. I just got a mailing with the list of speakers/dates and Some topics interest me, so I will probably go.

    I appreciate your suggestions. It’s a tough disease to deal with!

    Lovetobake

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  • By Karl Robb Moderator

    Hello Lovetobake, I think Kelly has wonderful suggestions for you! I wanted to suggest that you explore meditation and relaxation techniques to quiet your mind, to help you sleep and get the rest that you need. I have found yoga, reiki,meditation, breathing techniques, and Rock Steady Boxing help me to sleep soundly most every night. I have had PD for over 30 years and I agree with you that this is a tough illness.It is because this disease is tough that we have to be willing to selectively try and find therapies that work for us–as each of is so different. I really believe that these and many other therapies have benefit. The trick is finding the one or more that suit your needs. Karl Robb, ParkinsonsDisease.net Team Member

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  • By popuppy

    I was diagnosed in 2015 with PD. I had symptoms for at least 5 years prior to being diagnosed. I’m 68 now and I thought that the tremors were from high B/P and other things like memory and other things were just part of getting old. I didn’t realized that I was shuffling when I walked. It wasn’t until I went to the ER because of loss of balance and fog brain.

    After being diagnosed I was sent to a long term care facility to learn how to walk again as well as learning PT. for PD. I was given a walker which as of now I don’t use because I tended to lean down and forward, same with a cane, so now I use a hiking staff everywhere I go and unfortunately that drew more attention to me and the questions started to come. Luckily for me a good friend of mine mother has PD and we have a lot of the same friends made things easier for me. My best friend went and researched PD on his own and my wife has been with me on doc visits and share with her everything I learn about PD so both of them know and understand what’s going with me. I believe that having a strong and caring support system has really helped me. I also have a bag from the Parkinson Foundation that take with me all the time that contains information about my meds as well as contact info just encase something happens. I don’t pay attention to looks I receive anymore. The walking staff is somewhat of a PTA especially in public places but it helps with my posture and has saved me from falling many times. The one thing that still bothers me is that my motorcycle riding days are over.

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