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I have noticed that a number of posts make reference to having a lot of PD related symptoms. I know there are many but often they are not well known to have a connection to PD. I think it would be interesting to know what kind of things others are going through. Making a list of them on one post would be eye opening. I realize that this forum is great in this regard and I appreciate it so much, however, it is difficult to to find specifics and if you don’t even know what you are looking for it’s impossible. Most posts refer to one or two symptoms. When I learn that one or another of my issues is in fact PD related it is an AHHA! moment. I find it very helpful when I read a post that describes exactly what is happening to me, especially when it is something that isn’t a part of the general understanding of what PD is. I think it could be helpful for some of us on this forum to be able to identify with others experiencing symptoms not well known as it would give us opportunities to look into how it applies to our individual situations, discuss it with our neurologists and maybe find a treatment.
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I was diagnosed with PD in 2019.
I have lost an incredible amount of weight for me. 48 pounds
I have trouble swallowing especially potatoes and bread.
I have had strange discharge from nose, mouth and eyes.
memory issues- why did I just come in here…
I have sciatica pain but work through it.
I take 0 pd medication.
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I have had PD for eight years. Constipation is one of the other sypmtoms I could do without. Another is when I am tired (not getting a nap after lunch) when I take my sinemet my speech becomes so garbled even I can not understand myself. I too have lost weight and it is harder than H to gain weight. I am at a healthy weight now, but I have to fight to keep it there. Balance issues are getting worse. I have a propensity to fall backwards. I have heard it said that PD is a disease where you can not rely on those automatic functions that I took for granted for all the years prior to my diagnosis. If I practice mindfullness with walking, eating, speaking, etc. I can get along pretty well. But it gets damned annoying to have to remember all the time of what you used to, you canot do anymore, But as they say it is better than the alternative.
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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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Marlene, I was diagnosed with fibromyalgia in 2002 and with PD about 3 months ago. Like you I never know which is causing my symptoms. I have a lot of pain in my neck, shoulders and lower back and have been hesitant to take prescribed pain meds. I also have a lot of fatigue, which seems to be less with my Parkinson’s meds, but I get tired easily. I guess I am just confused most of the time as to why I can’t feel “normal,” and do the things I need and want to do. Just thought I would reach out to you since you probably understand the dilemma of having both of these conditions.
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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.
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Handwriting becomes small.
Voice becomes softer (though you may not notice that yourself).
Poker face..no expression.
One hand quits swinging when you walk.
Numbness in your feet at night, or feeling ants in your feet. Probably due to medicines which make you lose magnesium and potassium (medicines which lower your blood pressure).
Tired during the day..easy to fall asleep.
Constipation.
There are more symptoms.
Does anyone feel that the medicines or PD give you seeing problems?
Hope this helps.
Tom
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Hi Tom, When you say seeing problems do you mean eye problems or hallucinations? I also have the tingling in my feet, bees buzzing in my feet, bubbles in my feet. It really bothers me too. For me I think it is the business of the spinal cord and sciatica which is linked to PD.
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My husband who has Pd has had vision problems due to eye muscles not working like they use to bec of his Pd also voice cones and goes gets soft when talking g he does kid speech for that w speech therapist and it helps alot. Also rickvsteady boxing for balance walking issues and in boxing tvey use loud voice to use those muscles too. He hates internal shakes he calls it and memory loss and he has a very hard time typing on the g C imputed from hand tremors. Voice recognition helped but when his voice changes the program doesn’t work. One day at a time and he too has lost a lot of weight and sleeps so so much day and night and he hates confusion he feels and short term memory loss other than that he is doing well lol
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GREAT topic!
I made a list of all of the problems that can be associated with PD. I am a volunteer each year for the PT and OT students at our local Medical University. This year, I decided that they needed educating beyond the “usual” problems: tremors; stiffness; bradykinesia; poverty of associated movements; stooped posture; balance problems; masked facies; memory issues; and hallucinations). I wrote this and gave it to each student and to their teacher. (I also gave it to my Neurologist, because honestly I don’t that SHE is aware of many of these problems.) I have most of them, not all, but I’ll list them all. The ones I do have, I typed (check) beside.
1. SKIN (a) 10-fold risk of Melanoma (check)
(b) Seborrheic dermatitis — scale-like plaque which can cover back and/or face2. EYES (a) Loss of 3-D vision, which makes parking and driving difficult, if not
impossible (check, had to stop driving completely)
(b) Blurriness when reading (check)
(c) Dry eyes, which can cause corneal abrasion3. EARS — Central hearing loss, so hearing aids cannot help (check)
4. NOSE — loss of ability to smell
5. SALIVA — may produce too little (dry mouth) or drool b/o muscle weakness
NOTE: Severe dry mouth causes: a. Severe swallowing difficulties
during the day; b. sleep difficulty; and c. cavities. (I have a & b.)6. GI TRACT — canadversely affected in every area of the gut:
(a) Mouth — chewing difficulties
(b) Esophagus — swallowing difficulties, can result in life-threatening
choking (check)
(c) Stomach — gastroparesis (check)
(d) Colon — extreme constipation/fecal impaction, with subsequent difficulty
in passing gas (check)7. ORTHOSTATIC HYPOTENSION — can result in fainting episodes (check)
8. VOICE — can become raspy, and eventually very soft (check)
9. CARDIAC ARRHYTHMIAS — NOT much known about this, but is beginning to be studied
(check, PAC’s + “stress” MI)10. INCONTINENCE — urinary is more common, but fecal can occur (check — urinary)
11. SEX DIFFICULTIES, both genders (check)
12. MUSCLE CRAMPING (check) — magnesium may help
13. GAIT — festination; sudden unintended steps laterally and/or backwards (check)
14. HEAT INTOLERANCE — and for some people, cold intolerance as well (check, heat)
15. HICCUPS — yes, really! (check)
16. SLEEP DIFFICULTIES —
(a) REM related sleep disorder (dream-enacting behaviors during sleep)
(b) Difficulty falling and/or staying asleep17. CLUMSINESS — I suspect this is related to loss of 3-D vision (check)
18. FATIGUE!!! (check)
19. APATHY — which contributes to social isolation (check)
20. DEPRESSION (check)
21. DYSTONIA — secondary to medication
22. DYSKINESIA
NOTE: There are TWO PARTS to the Nervous System
(1) Control of the “voluntary” muscular system
(2) The Autonomic Nervous System (ANS)– responsible for things over which we
have no control.SUMMARY: In my experience, little interest seems to be shown in the ANS PROBLEMS, many of which can be life-threatening. Is it because the medication doesn’t help with these, so “why bother”? I don’t know. But YOU need to know. This is a list of which of the above problems are caused by the ANS: 1, 2, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14,15, 16-a, 21, and 22.
Just FYI, #3 and #4 are caused by damage to the brain itself, due to PD. #21 is a nasty side effect of the medication itself.
I will be interested to hear if others experience these problems, but never knew that they were caused by PD. Also, if people have additional PD problems not listed above, I would be very interested.
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Katherine,
I agree with your list of symptoms. I’ve seen others included elsewhere, but your point is valid. There are many ways that PD can affect the patient. Many of the nonmotor symptoms go unnoticed to those on the sidelines, but definitely not to the patient. The key is to find ways to slow the progression and severity of the motor and nonmotor symptoms through life choices and medications. The movement disorder symptoms are receiving a lot of attention from the medical professionals, but the nonmotor symptoms, which can be very impactful, might need more attention to better understand their causes and what the patient can do to best address these challenges. For example, the patient is referred to a PD focused physical therapist to address motor, dexterity and core strength issues but he is typically referred to a urologist for bladder or ED issues, who just prescribes medications. Are there physical therapy exercises that could could possibly strengthen muscles responsible for Bladder and ED issues that could supplement or even replace the medication’s? This is a topic that might be a good topic for some additional research.
Richard
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I totally agree with you Richard on the lack of help regarding the non motor issues. I really feel my husband would benefit greatly from core strengthening and ways to help muscle strength so he doesn’t fall. He is really tall and falls really hard, but he wears knee pads which helps immensely. But the failing strength in the legs and core, even though he cycles daily is very worrying.
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Katherine, thank you so much for your contributions to this forum. Your posts have been very helpful to me and you have the same kind of questions about PD that I have. I also believe most doctors are unaware of many other symptoms that are related to PD and that more and more will be attributed to it in time. There is a thread here that asks what is your weirdest symptom that may be of interest to you and others.
I have quite a few symptoms related to PD and I am grateful that so far I haven’t had them all at the same time! True, but that was a bit of a joke. I have a great deal of difficulty explaining my issues to my doctors. I don’t expect everything to ever actually be resolved but I would like to have a better understand the whys of it all. I have the standard movement issues that are well known like Dyskinesia however my physio has helped me with freezing, slowness and my gate. I have/had all of the following: Various skin disorders I did not have before, constant itching, bruising, crusted scalp, oily face. Cognitive issues, can’t find words, use words incorrectly, slurred and stuttered speech, forget information just relayed to me. Difficulty swallowing, dry throat, water goes down wrong so I choke, clearing throat. Loss of dexterity, can’t pick up pills, fine motor skills are bad etc. Either excessive sweating or no sweating at all. Can not tolerate heat, feels like I can’t breath in heat. RLS maybe Akathisia is so awful at times I truly want to throw myself off a bridge. Thankfully increasing my Levocarb has lessened the craziness of it. Also I can be very rigid. Legs swelling, sometimes only one leg, sometimes both, sometimes includes feet other times not, charley horse cramps at night terribly painful. Macular Degeneration, dry eye, vision issues. Big time anxiety but meds helping. Chest Pain/Pressure on chest/Cardio problems that cardiologist is still investigating. Constipation is mostly under control with drugs and magnesium, heartburn and sharp as well as dull abdominal/gut pain. Terrible sleeps, REM, very clear dreams, insomnia. Slowness in doing everything. Fatigue but better since my Blood Pressure med was lowered. I have pain most every day but don’t know what is PD related and what is arthritis. Crazy Blood Pressure readings. Hum constantly many times not even aware. I Scream very, very loudly when surprised like if my spouse enters a room I am in,if someone gets on or off the elevator and I am not expecting it, I have no control over the screams. Cry hard at inappropriate times. That is all I can think of right now that I have experience with PD.
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Tony,
You mentioned <span style=”text-decoration: underline;”>akathisia</span>. I had never heard that word, but when I looked it up, it described my condition. I have an urge to move all the time. It’s particularly bad when I get in bed and try to sleep or when I watch TV while lying in my recliner. I tap my feet together violently. I can stop if I think about it, but it starts the moment I think of something else. It’s like restless leg syndrome, but it is a repetitive motion that can go on for hours. One way I can stop it when I want to sleep is to make my legs move so strongly that I am exhausted. Then I have a brief respite that allows me to go to sleep. I don’t appear to do this when I am sleeping. Another way I can stop it temporarily is to meditate, but as soon as I stop meditating, then it comes back. I also bite my lower lip extremely rapidly. I bite it at a rate of about 15 bites per second. I can wear a mouth brace to stop this. My doctor thought these might just be other kinds of tremor, but tremors are not as vigorous. My wife also has Parkinson’s, and her tremors are mainly in her hands and have a rotary motion when she is resting. So thank you for educating me. I’ll discuss this with my doctor at my next appointment.
Another thing you mentioned is constipation. I suffered from this for several years, and none of the standard cures such as Miralax helped me. Then a doctor told me the perfect solution: eat three prunes a day. Once I started this, I never had a problem again. Apparently prunes contain a chemical that softens the stool so I can expel the BM.
Richard
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Hi Dick, I just saw your reply now. I am so glad you mentioned Akathisia. I started a thread in 2020 and there were many responses going through to 2021. Many of the posts are very detailed which I found extremely helpful. Jo was great with details. It is good when a post is descriptive as often there is so much to it you miss something that could be of value to someone else. I suggest you look up the Tags Akathisis, Amantadine, Inner Parkinsons, RLS on this FOURMS site. It will pop up just below the bubble where you type in the tags. There is so much information and sharing and relief for those of us knowing we aren’t crazy. Let me know if you find it please. I would appreciate your thoughts after you read it all. Further to this, my new neurologist thinks this is a really bad case of RLS. I remember when I was researching this there were videos on line of people displaying Akathisia symptoms and it could have been me. No matter what any of us call it for me it had been the most terrible part of this disease. Those symptoms I describe in the other thread only happen now once in a great while. The only change that was made was an increase in my Levecarb. Best of luck to you Dick. I feel for you.
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Toni,
I tried Amantadine but it made me sleepy. I fell asleep twice while my Tesla was driving at 80 mph on the highway !!. My wife was sitting next to me in the passenger seat and woke me up. I have stopped taking this drug and now have been using a cannabis gummy. This helps but makes me a little spacey, so I only take this when I am home watching TV. At night my legs get going as soon as I get in bed. This is very annoying and keeps me from falling asleep.
Dick
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Here’s my jewel box:
loss of sense of smell (anosmia)
handwriting has become illegible (micrographia)
constipation (I use a tapwater enema each day to flush out the lumpy blockage)
insomnia/poor sleep
klutzism (excuse me, may I knock over your lemonade gladd?)
balance issues (I call it the drunkard’s walk. It got me a free half sandwich in France one time–from sympathetic shop owners who thought I was drunk)
involuntary emotional choking when talking or reading aloud (my brain apparently thinks some idea is just SO important that it chokes me up). A few times when watching a movie on TV, the “good guys” would win or make progress, and I would start sobbing. So now, I can completely sympathize with women who cry when something emotionally dramatic occurs.
sialurea (drooling). So far it’s been kept to drooling on my pillow, but once or twice I’ve very nearly drooled into the salad bowl.
soft voice (the people who talk to me all must need hearing aids, because they act as if they can’t hear or understand me)
fatigue. My level one fatigue is a constant tiredness with little variation. Level two is what many Parkies call having an “off period.” Takes away all motivation, makes me just want to die and let go of the burden of life. I have learned something about this in my own case (it’s often difficult to generalize about Parkinson’s). If I eat a protein bomb (definition: protein bomb: a concentrated amount of protein without accompanying food to moderate the processing of the protein), I will be thrown into a “off period” within an hour and suffer through it for the next three or four hours. Fun science fact: Protein is the enemy of dopamine, and beats up on the dopamine unless those guys are not protected by some other non-protein food (lettuce, carrots, French fries).
That’s all for now.
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I have quite a few symptoms, starting with tremors, anxiety, depression, then going into double vision and vertigo. One of the worst, though, is GERD which caused me to lose 30 lbs. in 4 months before I was diagnosed. Also there are the urinary problems: frequency and retention. The retention has gotten so bad that ultrasounds have shown that my right kidney is swelling from the back-up of urine, so my husband uses a catheter on me every night. My speech is very slurred in the morning before my C/L kicks in. I’m having tooth loss, too, even though my dental care is very good. I’m noticing some cognitive issues developing, too.
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I am so sorry that you have so many problems to deal with. (And I empathize.)
First, the akathisia. I did a little research and found that there are a few things that may help decrease those symptoms:
(1) Beta-blockers, such as propranolol.
(2) Benzodiazepines (a class of drugs commonly used to treat conditions such as anxiety, insomnia and seizures. This includes Clonazepam, which several people have mentioned as helpful to them. I also take a very low dose of Clonazepam and it is extremely helpful.)
(3) Low-dose mirtazapine (an antidepressant).
(4) Anticholinergics (medications commonly used to treat asthma and other conditions).
(5) Vitamin B6 (I also take this.)As for the macular degeneration, again I’m so sorry you are having to deal with this on TOP of everything else. I have not found any relation between PD and macular degeneration.
The oily, scaly skin you describe sounds like seborrheic dermatitis (I mentioned that, above).
Mood swings can definitely (frequently) occur with PD. Yours clearly are upsetting for you. I don’t know if you’ve seen a Psychiatrist, but possibly someone could help? Could also help with sleep problems. [Been on any antidepressants? benzodiazepines, mood stabilizer? If so, which one/s — only if you can to share, of course.]
Leg swelling (which I had massively in June, and was emergently hospitalized) could be secondary to cardiac and/or BP issues from PD. Perhaps there are other BP meds which could be helpful, instead of some of the ones you were using before. [Do you know the name of what you were/are taking?]
Have you had Speech Pathology? That helped me immensely with the volume of my voice, swallowing safely, and (believe it or not) short term memory! I never expected that they could help in so many different ways. I had it twice a week for 6 months, and swallowing — which was terrifying and painful — is just about gone! YAY!!!
If you are having “off” periods prior to taking your next dose of Sinemet, has your doctor tried adding Nourianz? I took it briefly but felt that it was drastically increasing my dyskinesia and stopped it. By any chance, are you on Rytary? I was constantly fatigue on Sinemet — 10 hr. sleep at night, falling asleep during the day, naps were essential. I hated it. It also caused severe nausea for me. So my Neurologist changed it to Rytary. And oh! what a difference! It’s inordinately expensive and Medicare, nor my advantage plan, don’t pay. However, I found out that the Pharmacy at the Medical University of SC was more than happy to obtain it for me for free!! I am on it 6 X/d, so they send me a massive quantity of pills (540, to be exact) every three months. It is “refillable” after one year. There are also some Christian organizations who help patients afford extraordinarily expensive meds. (One is helping me with kidney medicine I am taking.)
One last thing: I was fascinated by your exaggerated startle response. I have that, too!!! I never put 2+2 together. I wonder how many others have that.
Well, if you’ve read this probably too-long missive, then I congratulate (and admire 😉 you! I’m sure I left out some things, but please ask again. It is such a blessing to be able to be in touch with someone who “knows”.
I forgot to mention: google “Autonomic Nervous System”. If you are not already familiar with the ANS, I think it will fascinate you and answer some of your questions.
With all my best to you,
KathyP.S. My strangest symptom is: HICCUPS! (I already wrote that on the other page.) Do you ever have those? It’s because the diaphragm is having a little fun with me.
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Katherine,
I just finished writing to Toni about my akathisia and then I saw your response. As I wrote Toni, I have an urge to move all the time. It’s particularly bad when I get in bed and try to sleep or when I watch TV while lying in my recliner. I tap my feet together violently. I can stop if I think about it, but it starts the moment I think of something else. It’s like restless leg syndrome, but it is a repetitive motion that can go on for hours. One way I can stop it when I want to sleep is to make my legs move so strongly that I am exhausted. Then I have a brief respite that allows me to go to sleep. I don’t appear to do this when I am sleeping. Another way I can stop it temporarily is to meditate, but as soon as I stop meditating, then it comes back. I also bite my lower lip extremely rapidly. I bite it at a rate of about 15 bites per second. I can wear a mouth brace to stop this. My doctor thought these might just be other kinds of tremor, but tremors are not as vigorous.
I’ll suggest your solutions to my doctor and let you know what happens.
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My weirdest symptom ?!
The top of my head, my scalp, itches almost all the time. This started years before I was diagnosed, probably 5 years before, and I’ve been diagnosed for 11. My dermatologist, internist and beautician don’t see a thing on my scalp. I don’t have dandruff. I looked into it being a pinched nerve somewhere in my back or neck but it’s always there.
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Now my biggest problem is severe pain in my right buttock which runs all the way down my leg to my foot. It makes me seriously stop to think how to turn or move in tight places. I’ve been told by PT that it is my piriformist tightening and causing a problem with my sciatica.
Sorry, I guess I could have just given you the last paragraph. I will try to limit myself next time.
Judy
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Many similarities to those above:
First symptom was loss of smell years before any other symptoms. Although my dad had PD he didn’t report this symptom so when I got it I didn’t make the connection to PD
Next was tremor, starting in one thumb and spreading to the entire forearm. That’s when it clicked for me, and I asked my GP for a referral to a neurologist
Handwriting is small.
Voice is softer
Poker face..no expression.
Tremoring hand quits swinging when I walk and I clench it like a claw.
Physical exhaustion. Can’t walk much more than 5km at a time or work outdoors more than 6 hours a day. Feels like I’m wading through a meter of water at the end.
I do everything slowly. Walking, dressing, working. I’ve tracked my cycling speed for 10 years and I’m 30% slower than I used to be. When I see my reflection in store windows while walking down the street I see someone 20 years older than my actual age (63)
Tired during the day..easy to fall asleep, although not as big an issue on days when I keep myself busy
Sleep disruption at night, both trouble falling asleep and waking up frequently
Inability to handle stress. My whole body shakes and I become irritable and snap at people. Fortunately I’ve insulated myself from a lot of stress by retiring.
Cramping in the feet
Recently developed dyskinesia (head bobble)
Fortunately I have not developed most of the non-motor symptoms like constipation, apathy, depression or hallucinations. My Dad had many of those.
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Thank you to all who responded to my post. It is so helpful and I very much appreciate it. Karlyn, I noticed that you included sciatica. I too have it and just this year I realized that there is a connection. The spinal cord and brain stem seem to play in everything. Jeffery, I was interested in what you said about stress. I have it big time and it upsets me to think how I react to it. I too shake all over. I don’t scream at people but I do yell out loud to no one or to myself, often swearing my head off. I get so frustrated with it I actually want to throw things. Not at people, just in general. When I stress like that all my symptoms get much, much worse so it’s like a chain reaction. I am now on Zoloft which is helpful. If I can feel a stress episode coming on I take an Ativan. I only use maybe 1 every 6 weeks or so. Robert, when you mentioned the sobbing I wonder if you think it is either inappropriate and/or an over the top reaction to something that is not that terrible. This year I noticed that I react with sobs inappropriately, meaning that I go way overboard, crying at nothing really, just for seeing a friend of my nieces. One incident I was very emotional toward my son in law who made a fun joke that usually I would have laughed hard at. I cried, sobbed embarrassed myself and went on and on. It was awful. I had absolutely no control over it. I have since learned of something called Pseudobulbar Affect (PBA) that is associated with PD. Of course it could be anything really considering our emotions can be problematic when PD is in the mix. Patricia, I too have mouth issues and lost a tooth. I also see my dentist regularly and care for my teeth and gums but it doesn’t seem to matter. Katherine, thank you again for all that information. I very much appreciate knowing whatever I can. As far as Macular Degeneration goes there does appear to be a connection to PD. I have read some Journal articles and studies re Ophthalmology and PD and it is listed as one of diseases that is associated with AMD. There are several. The retina is dependent on neurotransmitters to do their work and neurodegeneration plays a role because of the cells in the retina. It has something to do with oxidative stress as well I think. I no longer have many off times since my Levocarb was increased and I take my meds on time. I find if I have had a stressful day or was too active or did too much exercise or I am in pain that I seem to use up my dopamine much quicker and may have an off time under those circumstances. I have a PD counselor who said that yes it can be used up faster under stressful situations. Yes, I am on Zoloft now which has helped at lot. It’s a change from something else, the name escapes me, but was not good for people of my age so I was switched. I also will take an Ativan if I feel a stress or anxiety episode coming on. I take them sparingly using maybe 10 in 12 months. I have never had a Hiccup problem. I notice that I have some symptoms it seems that few others share yet symptoms often noted by those with PD I do not. Go figure. It shows once again how different we all are and for me personally when I find someone who shares my experience I don’t feel so alone. I have a very strong voice and I could be a wine or perfume tester as my sense of smell is extremely good. I also do not have weight loss in spite of my GERD, esophagus and mouth problems. I am overweight. I do know about ANS and agree wholeheartedly that it is really interesting and sheds light on much of my wondering. Now if I could only remember all the names of all the various branches, ganglia and the rest of it. OOOPS! is memory a part of this? LOL I hope I answered all your questions. Thanks again to all. I learned a lot. I hope the thread was helpful to others as well.
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So happy to see your reply, Toni + to read all of the other replies!
TONI: Yes, the fellowship makes things more tolerable.
(1) I’m glad that you are on Zoloft. If it’s helped “some”, but not a lot, you might see about possibly increasing the dosage. I used to find that made a big difference in some of my patients.
(2) Wow! Some valuable new information!
(a) Pseudobulbar palsy — I had NO idea that could be related to PD!
(b) Macular degeneration — again, no clue about a relationship to PD.
(3) For me, STRESS is a killer! I can get so shaky that I become completely non-functional. I do everything I can to avoid it, but sometimes that is impossible. Hmm, I wonder if your “temper” could be a reaction to stress? I know that when I’m/I have been stressed, I literally fly off the handle, screaming at everyone in my family. I can’t seem to control it.
(4) Turns out that loss of smell is only in a minority of patients! New studies are showing that. My sense of smell is actually heightened in recent years; it’s so strange. I actually like it.
(5) Memory? ABSOLUTELY! Short-term memory for me. Same for you?JEFFREY:
(1) Interesting that you have still not had constipation. That is generally the first symptom, sometimes preceding the PD by several years.
(2) Yes, the fist clenching!
(3) Yes, seeing myself and shocked to see that I look 20 years older than I actually am.
(4) Your activity level is WONDERFUL! That you have adequate balance to ride a bike is terrific! I’m at the point now where I pretty much can’t work in my garden any more because I fatigue — and fall over — easily now. Just starting to get back to walking. A new “Up Walk” rollator has been a godsend.
(5) Micrographia — how did I manage to forget that? Oh, I forgot! I have short term memory loss! (Sort of a joke, except it’s true. 🙂 )ROBERT: Looks like you’re blessed to have most of the major symptoms of PD. (sarcasm)
(1) “Klutzism” — that’s a new word for me. I like it.
(2) I LOVE your story about the free half-sandwich in France! Were you in Paris? People often say that Parisians are unfriendly. I never found that. If they’re unfriendly, it’s the tourist expects the French to speak ENGLISH! Can you imagine if we demanded that every tourist in the U.S. spoke fluent French, German, Hindi, Japanese, and Mandarin? LOL!PATRICIA: You are having to deal with SO much. Please know that you have my sincere sympathy. Becoming so dependent on others (the I&O cath by your husband each night) really has made me feel depressed at times. I feel like I am doing nothing to help other people. Do you ever feel like that?
THOMAS:
(1) Neither of my arms swing when I walk. I can’t “think” them to move, or if I do it’s is only momentary.
(2) I’ve been assuming that my blurred vision + loss of 3-D vision are a symptom of PD, not caused by meds. I didn’t have either of those problems in the first years of being on medication with PD, so I figured that it couldn’t be the medication causing those problems. If you find out more, I’d be very interested to hear it.JENNIFER: That is a “weird” symptom! The fact that no one can see anything is odd. I had bizarre scalp itching for hours after receiving IV morphine some years ago, and decided to have it written in my chart as “Adverse reaction”.
JUDY: Is the muscle tightening due to the rigidity of that muscle? Does anything help?Please write more! You must have deleted most of what you wrote. I’ll read all of it with great interest.
WILLIAM:
(1) The loss of balance is a killer and has been by far the worst thing for me. I have broken more bones than I can count, including from falling down a set of exterior wooden stairs (i.e., no carpet). A walker did nothing to help because it would just caught on the tiniest thing outside. I pretty much became homebound for the past 18 months. However, I now have a “Up Walker” rollator and am able to go outdoors again. I can also stand up straight! YAY! I, too, have that bizarre experience of walking backwards (and laterally, too, twice). I can’t do a thing about it, to stop it. Can you?
(2) Long ago I stopped thinking about what I can’t do. Maybe it’s been easier for me because I got PD following a 2-year period where severe dementia was taking up my entire life. (Long story. All of this followed a horrific malpractice by a dentist. I ended up in a coma for a week, wasn’t given adequate oxygen, and ended up with hypoxia. Thus the brain damage: frontal lobes and basal ganglia are most affect by hypoxia.) I had a truly “normal” day last week. It was like a miracle. I thought, “So THIS is what it would be like to be a healthy 69-year-old!!” I’ve been sick since age 59, so never experienced normalcy of any kind throughout my 60’s. I couldn’t believe how WONDERFUL it was! Boy, what I’ve been missing. I told God that I was tremendously grateful for that wonderful day. I didn’t ask for more.MARLENE:
(1) You’re the only other person to talk about tremor in your core. I have it every morning when I wake up, probably because my dopamine level is low. It feels like snakes crawling inside. Do you hate that feeling?
(2) Interesting about your “random dyskinesia”. Mine is the same — out of the blue. Sometimes one of my arms will suddenly decide to jump way up. It’s called “hemiballismus”. Don’t know yet if is related to PD>
(3) Did you see Jennifer’s post re her scalp problem? That is a new one to me. I’m fascinated that you have it, too.
(4) Does your yelling in your sleep wake you up? Or are you told about it the next day? Do you take anything for sleep?
LOVE the pleasant “phantom smells”!!!KARLYN:
Have you seen a Speech Therapist for help with swallowing? Your weight loss is extreme. I worked with a Sp. Ther. twice a week for 6 months. She gave me all sorts of interesting tongue, mouth, and jaw exercises to do in between appointments. It has helped enormously. I hope you can find someone to help. P.S. I’ve had a lot of problems with rice, and was told that I should avoid untoasted bread and rice.I hope that my comments may be helpful (or at least supportive) for a few of you. I’m so glad that you are participating with Toni and me.
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Katherine – Yes I do sometimes feel like I’m not helping anyone. So many things that I used to be able to do are now being done by my loving husband. I do everything I can by myself and feel grateful that I can still these things. I spend more time feeling grateful than I do feeling deprived of my old life. Attitude can make such a big difference, as I’m sure you know. Thank you for the comments. I really appreciate that.
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You are a terrific lady! I’m glad that your husband is such a good man. Sounds like you deserve each other. The only really bad time I had, re depression, was this past June. I was hospitalized for malignant hypertension with “flash” edema. That, on top of the PD, made me unable to walk for 3 months, and really to do anything worthwhile. I’ve now had 2 good months, and am so grateful and back to my usual self (one day at a time; thankful for my blessings).
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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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I’m thrilled to hear that your dreams are happy ones, and that the “yelling” is what you did for 34 years. Your post just reminded me that my daughter’s wonderful KG and first grade teacher, Judy Sneed, had to yell as if she was holding a bullhorn to get the children’s attention when they were out on the playground. I was sitting on the bench, next to her, one day and she yelled like that. I was astonished that such a loud voice could come from such a gentle person! I said, “Judy! How did you do that?!” She said, “Years and years and years of practice!” Loved it! Were you an elementary school teacher, too?
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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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I know my dad has talked about urinary issues. He doesn’t like to go into detail, but I think that he means he has to urinate very frequently.
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Like Marlene, I have fibromyalgia so I’m not sure which amuses what. But here we go
constipation (IBS-C). Started 50 years before diagnosis
Insane amount of fatigue and sleep problems
full body tremors
sweating I can be sitting still doing nothing and be completely covered in sweat in minutes.
gait-balance issues
weight loss
dry eyes
oh yeah memory issues especially short term memory
that’s all I can think of but there’s probably more
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Everything you’ve listed are things that can be caused by PD. Your sleep problems and gait issues could possibly be worsened by Fibromyalgia. Your PD symptoms sound so uncomfortable. I had a friend who had that sweating problem. It was so miserable for her. We’d be sitting in a nice cool place, and suddenly she’d be soaked, drenched all over, and need a fan. (She carried a little battery-operated fan wherever she went.) Is your weight loss caused by difficulty swallowing? If so, a Speech Pathologist may be a Godsend for you. I received remarkable help from 6 months work, twice a week, with a Speech Path. Is your doctor giving you something to help with sleep? You might like to look at a recent discussion about the pros and cons of the medication, Clonazepam. Personally, I take 0.5 mg at bedtime and fall asleep easily + sleep well throughout the night.
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I started around 2004, and was given a diagnosis in 2012 which became “official” in 2014 according to the US. Government when my disability became active.
Here’s my list.
— Tremors on my right side and internally when I’m off or when the meds don’t work well.
— Fatigue*.
— Vivid dreams
— Plumbing issues.I can’t poop for squat most of the time. The bladder is more frequent and when I need to go, it’s a case of I NEED TO GO NOW!
— Weight loss.
— Loss of sense of smell, yet my sense of taste is okay.
What’s odd is I won’t smell something until I see it, but smell it fine afterwards. A good example is coffee brewing. I don’t smell the coffee in the morning until I walk into the kitchen then I smell it when I see the pot.— Phantom smells.
I smell flowery perfume and cat box. We no longer have a cat at least for now and no one around to wear perfume unless my brother and dad are doing something secretly. The perfume includes one my mother used to wear and she’s been gone since 2018.— Balance issues. I’m retro pulsive and can fall backwards easily.
— Shuffling gate
— Reduced arm swing.
— Low Blood Pressure.
— Dizzy, not BP-related.
— Uncontrollable sweating when it’s hot out.
— Excessive freezing and shivers when cold.
— Unable to regulate body temperature and live in sweaters, hoodies and short sleeve shirts. The hoodies and sweaters are on and off all day.
— Dystonia
— Muscle spasms
— Muscle stiffness
— Loss of fine motor control
This affects my piano playing and is very frustrating as I lose that fineness and fine control of pedals, finger voicing and arm weight control, and affects my ability to move quickly between sections of the keyboard.— Odd loss of control one day but okay another.
My doctor isn’t sure about this but it’s worth mentioning, I think. I first noticed this when playing piano. There are times when the hands want to do their own thing. Fingers will stop moving or play something else as if they’re ignoring what they’re being told to do. If I stop playing for a few days, everything resets and I’m back to normal again. This has occurred when I type and I’m afraid it’ll affect my driving someday.— Executive function issues.
I have had a few instances where I did stupid things like put a metal pot with eggs and water into the microwave because I was going to make hard boiled eggs. I caught myself doing that and was able to correct it.
I also forget or get confused now with such things as righty tighty, lefty loosey and ended up with water all over the place and the gas grill blowing gas.
— Forget words and have to come up with replacements. Some days are brain mush while others are fine.
— Poor concentration and focus. Look there’s a fly instead of listening to a conversation.And probably a lot more that I forgot.
*Now, fatigue is also part of my other condition. I am one biomarker short of Lupus and have Sjögrens Syndrome and ended up with peeled eyeballs a few years ago. I’m now on Restatis for that and have other symptoms now of flare ups, dry mouth, and sore joints.
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Hi John,
I guess you’re just lucky: you’ve got almost all of the symptoms of PD. (Sorry, I don’t mean to be sarcastic, just ironic.) The smell issue fascinates me. I wish that you only had the perfume scent. That part of it seems lovely.
I also played the piano. I didn’t even bother to try for the past few years, because tremors were horrific. But then a student at the OT/PT class I taught said that her piano teacher had quit playing when she was diagnosed with PD — but when someone urged her to try, she actually could play as she used to. (The “reset” you mentioned is interesting.)
So I decided to give it a try. I was stunned when my hands went back to their old “motor memory”. I worked on a Chopin Nocturn, and a beautiful piece for quartet by Bach called “Air on G string”. These were new to me. And, after many tries, I memorized the Bach piece. It was wonderful! (My memory has been awful, too. Cooking is now definitely off limits after setting a pan on fire twice.)
So glad to hear from you!
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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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Where does one begin? From my nose to my toes. Today is a good day, what makes it a good day? Not focusing on my Parkinson’s. I’m 76, a Grand ma of 9, & a Great grand ma of 3. I was diagnosed 1/13/2014. My adventure started with PMR. After many months & tests, a pinch, a poke, & ex rays. I was told you are systematic of Parkinson’s, Ok, what do we do now ? My dry sense of humor has been a blessing (sometimes) but my one blessing is my husband, Bill.
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Love your sense of humor! And well said: “from my nose to my toes”. That’s PD in a nutshell. I don’t know why I have some “better” days. (I try not to say “good days” or “bad days”. Just say nothing or say “better”. 🙂 ) I know that stress makes for “impossible days” (a phrase I never use, but is accurate), but of course sometimes stress is simply unavoidable. I don’t know if you had a chance to read the VERY lengthy post I wrote at the beginning of this conversation. If you do, and it helps you to pinpoint something/s, I could tell you what help may be at hand — of course only to the best of my knowledge. Hopefully I know a bit more than average because I am an MD, did a one-year Internship in Neurology, had a father with PD, and have had it myself for 8 years. SO. If I can help, I will gladly do so!
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It’s very hard to tell. Looking back I think some symptoms were PD related but I didn’t know I had PD.
Diagnosed in 2021.
Symptoms:
constipation
right hand tremor
right arm stiffness
balance
gait issues
shoulder & neck pain (Arthritis?)-
Neck, shoulders, and back — all DEFINITELY can be a result of PD. Many of us tend to walk stooped over. In my case it’s to look at the ground to be careful that I don’t fall (would be my 300th fall, so far). As a result, we can end up with a permanently stooped posture. I just came back from PT where the focus is on helping me to hold my head up, and straighten my neck and shoulders. I was stooped, badly, for 5 years. I’m very thankful for the help with PT, but the pain can be ferocious.
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My Parkinson symptoms are:
Shaking on both sides of the body all limbs, head shaking, heavy saliva, trouble swallowing, slurred speech, soft volume in speaking, watering eyes, memory problems, loss of strength, slowness in gait, fatigue, constipation, incontinence, muscle spasms in the back, toes curling under my foot.
I think that is all. I an 65 and I was diagnosed 17 years ago. I was told to stay as active as possible. My wife makes me a cannibus tincture which I take at night before going to bed. She uses an Indica strain for muscle relaxation and this helps me fall asleep. There are no side effects or addiction problems. There is no THC in this.
I had the MRI guided ultrasound surgery in August at Brigham and Women’s and it reduced the shaking on the right side about 90%. I stopped taking the carbidopa/levodopa 1 1/2 years ago not seeming to get much relief and and realizing that long term usage can increase dyskinesia.
Emotional and physical stress causes shaking to increase and makes talking difficult.
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That’s very interesting about the MRI guided U/S. I just looked it up, and it is not the same as DBS. I’ve never heard of it (obviously not done at the hospital where I receive my treatment — the Medical University of SC).
I think your attitude is great! “I think that is all.”
SC allows no treatment whatsoever related to marijuana, THC or not. People have had to leave the state to save their children’s lives. (One example is a little girl who had status epilepticus. Only marijuana could save her. The SC Legislature absolutely refused to help her. Parents had to sell their house, leave their jobs, and move to a state where her daughter could receive “compassionate use” treatment with marijuana. It sickened me.)
The very best of luck to you in the future!
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That’s very interesting about the MRI guided U/S. I just looked it up, and it is not the same as DBS. I’ve never heard of it (obviously not done at the hospital where I receive my treatment — the Medical University of SC).
I think your attitude is great! “I think that is all.”
SC allows no treatment whatsoever related to marijuana, THC or not. People have had to leave the state to save their children’s lives. (One example is a little girl who had status epilepticus. Only marijuana could save her. The SC Legislature absolutely refused to help her. Parents had to sell their house, leave their jobs, and move to a state where her daughter could receive “compassionate use” treatment with marijuana. It sickened me.)
The very best of luck to you in the future!
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Reading through posts on this topic makes me want to remind myself FREQUENTLY that my life with PD isn’t so bad. I was diagnosed in 2009 and am still mobile. My biggest problem is diarrhea/constipation. I’ve been on the same dose sinemet since almost the beginning. If I had one bit of advice it would .be join a gym and go regularly. I had joined my gym in 2003 and still go every other day. I can’t run as fast on the treadmill and the same goes for resistance training but plenty of people a lot younger than me are doing less (I’m 81). I have the greatest difficulty dressing and changing into gym clothes. I’m very honest about my PD in the locker room and am pleasantly surprised when other guys offer to help me in dressing. My workout routine takes a little more than 30 minutes unless I’m in an energetic state of mind. If you’ve followed me so far there’s one bit more that’s very important. If you don’t feel like going to the gym IT’S IMPORTANT THAT YOU DO GO! For sure you’ll feel better for it.
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When I was diagnosed in 2020, it was a giant Ah ha moment. I had many symptoms that I now know are Parkinson’s related but couldn’t be explained at the time. I had been a fitness instructor for over 35 years and my first foot started to spasm and get weak during class. Then I had difficulty walking—it felt unnatural and awkward. When people would walk with me it felt fast, but it was really me slowing down. My upper body wanted to tip forward. My doctors thought I was a hypochondriac, and I don’t think I was taken seriously partly because I don’t have tremors. But before I was medicated, it reached a point where I couldn’t do things like use a can opener, peel potatoes, or open a pill bottle. Other symptoms I have experienced include:
*Nagging low back pain (still have)
*Loss of smell and taste going back 10 years (still have)
*Constipation (still struggle with this)
*Weird dreams and yelling in my sleep
*Inability to turn over when lying down.
*Insomnia
*Couldn’t stay afloat in a pool
*Constantly overheated and sweaty unless in a/c room.
*Pupil slow to dialate (on more affected side only)
*Urgent need to urinate and can’t hold it. (I’ve wet the bed twice)
*General weakness
*Aching and throbbing arms/legs- also an initial symptom
*hoarse voice and then soft voice—loss of singing voice – this is better now with meds
*loss of balance
*dizziness
*heart palpitationsI’m sure there are more I just can’t think of now. Many of these have eased with medication, but not the back pain. I do yoga everyday try to stay strong by lifting weights, doing push up’s, etc.
Hope this helps!
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I did this list for a new physical therapist.
<table dir=”ltr” border=”1″ cellspacing=”0″ cellpadding=”0″><colgroup><col width=”328″ /><col width=”460″ /></colgroup>
<tbody>
<tr>
<td data-sheets-value=”{"1":2,"2":"Fatigue"}”>Fatigue</td>
<td data-sheets-value=”{"1":2,"2":"i always feel like I am jet-lagged"}”>i always feel like I am jet-lagged</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Sleep issues"}”>Sleep issues</td>
<td data-sheets-value=”{"1":2,"2":"I generally wake up after 4-5 hours of sleep, unable to resume sleeping for 1-2 hours. Sometimes gentle exercise, sometimes reading in the wake period. It makes for difficult mornings."}”>I generally wake up after 4-5 hours of sleep, unable to resume sleeping for 1-2 hours. Sometimes gentle exercise, sometimes reading in the wake period. It makes for difficult mornings.</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Acting out dreams"}”>Acting out dreams</td>
<td data-sheets-value=”{"1":2,"2":"I have had a couple of acting-out dreams, one in which I found myself out of bed"}”>I have had a couple of acting-out dreams, one in which I found myself out of bed</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Tremor in hands, arms, legs, jaw, or head"}”>Tremor in hands, arms, legs, jaw, or head</td>
<td data-sheets-value=”{"1":2,"2":"jaw & right hand. Typically just makes doing things somewhat harder–i.e., typing is sometimes one-handed, right-now, just a little inconveniencing"}”>jaw & right hand. Typically just makes doing things somewhat harder–i.e., typing is sometimes one-handed, right-now, just a little inconveniencing</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Muscle stiffness, where muscle remains contracted for a long time"}”>Muscle stiffness, where muscle remains contracted for a long time</td>
<td data-sheets-value=”{"1":2,"2":"foot clenches in morning, deal with it by squatting or toe spacers. when sitting for a period, I feel clumsy getting up"}”>foot clenches in morning, deal with it by squatting or toe spacers. when sitting for a period, I feel clumsy getting up</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Writing changes"}”>Writing changes</td>
<td data-sheets-value=”{"1":2,"2":"I haven’t tried to write with a pen in years"}”>I haven’t tried to write with a pen in years</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Gait problems"}”>Gait problems</td>
<td data-sheets-value=”{"1":2,"2":"sometimes I walk with head forward and I look to Ann as if I’m unstable"}”>sometimes I walk with head forward and I look to Ann as if I’m unstable</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Slowness of movement"}”>Slowness of movement</td>
<td data-sheets-value=”{"1":2,"2":"I move slower than when I was younger"}”>I move slower than when I was younger</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Impaired balance and coordination, sometimes leading to falls"}”>Impaired balance and coordination, sometimes leading to falls</td>
<td data-sheets-value=”{"1":2,"2":"No falls, but a couple of trips while running. I worry that my driving reflexes are not what they should be"}”>No falls, but a couple of trips while running. I worry that my driving reflexes are not what they should be</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"A “mask” face"}”>A “mask” face</td>
<td data-sheets-value=”{"1":2,"2":"My wife says she can’t read me"}”>My wife says she can’t read me</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Depression and other emotional changes, such as apathy"}”>Depression and other emotional changes, such as apathy</td>
<td data-sheets-value=”{"1":2,"2":"I get tired of dealing with my limitations, the uncertainty, and the dread of what comes next."}”>I get tired of dealing with my limitations, the uncertainty, and the dread of what comes next.</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Difficulty swallowing, chewing, and speaking"}”>Difficulty swallowing, chewing, and speaking</td>
<td data-sheets-value=”{"1":2,"2":"sometimes my voice is weak and my tongue feels thick"}”>sometimes my voice is weak and my tongue feels thick</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Urinary problems or constipation"}”>Urinary problems or constipation</td>
<td data-sheets-value=”{"1":2,"2":"occasional mild constipation"}”>occasional mild constipation</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"loss of sense of smell"}”>loss of sense of smell</td>
<td data-sheets-value=”{"1":2,"2":"I have never had a good sense of smell"}”>I have never had a good sense of smell</td>
</tr>
<tr>
<td data-sheets-value=”{"1":2,"2":"Cognition"}”>Cognition</td>
<td data-sheets-value=”{"1":2,"2":"I have had some episodes of ‘brain fog.’ Not within the last few months."}”>I have had some episodes of ‘brain fog.’ Not within the last few months.</td>
</tr>
</tbody>
</table> -
I agree with Toni and Kim on their list. As an advocate and support group leader for many years (I am in year 22 of PD), I believe the autonomic nervous system is the one at fault. It’s clear that we have ingrained in our brain, the tendency to do what’s inherently automatic for us…and doubly clear that we must remain mindful (in the moment) to survive the inability of the autonomic system.
As info., a Parkie friend, has a little know symptom called pseudobulbar affect, where she cries and/or laughs (for awhile) without reason. Juat when I thought I knew them all…
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Hi Ann,
I am really glad that you mentioned pseudobulbar. In my post where I list most of my symptoms, at the end I mention crying inappropriately. I should have mentioned pseudobular by name in the post as that is what I have. It would have been helpful to anyone not familiar with the term but has the symptom, so thank you for adding this. I thought I had mentioned it… brain fog!!!! It is so unexpected when it happens and I can’t control it. I am thankful that I haven’t had an episode in many months. I appreciate people sharing so much information. As you said…just when you think you knew it all. It amazes me what is involved in this disease and I learn something from someone every day. I find educating myself to be a very powerful experience. I am always looking at symptoms on the threads to note other lesser known symptoms. The more information I have the more I believe I can help myself. Thanks!
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Hello all,
I was finally diagnosed in 2018. I think now I had some symptoms since 2015 or so.
Here’s my list.
1 Extremely slow and stiff. Treated with 2 Sinemet (Carbidopa/Levodopa) pills every three hours during the day. I never had much of a tremor.
2 Bowel problems. Currently treated with Ducolax soft chews every few days.
3 Urinary problems. Recently solved when my brain completely quit talking to my bladder. I require an indwelling catheter and collection bag now. The catheter is replaced every 4 weeks by the way.
4 Low blood pressure. Pain in neck and shoulders and light headed Treated with Midodrine tablets.
5 Mild Cognitive Impairment. Muscles aren’t the only thing that get really slow with PD. Daily Cymbalta pills help with this. Of course, I had to retire from working a few years ahead of plan too.
6 Vision problems. Loss of convergence at less than 3 feet. Solved with adding prisms to eyeglasses. No more tri-focals now.
7 Insomnia. Treated with melatonin at bedtime and Sinemet Controlled Release pills at bedtime.
8 Pain and muscle cramping. Cymbalta helps with pain. The addition of Comtan (Entacapone) pills three times a day helps with the muscle cramping that comes from the Sinemet wearing off.
9 Lost sense of smell. No treatment.
10 Becoming overheated and sweaty very easily. No treatment except air conditioning.
11 Low heart rate occasionally. In the low 40s beats per minute when Sinemet wears off. May need a cardiac pacemaker in future.
12 Cannot operate in crowds regardless of my medication situation. The Parkinson’s freezing of movement occurs around too many people. Too many sensory inputs I presume.
13 Cannot multi-task. Nothing solves this problem now. Except good lists and a very helpful family.
14 Probably some other things to list, but I can’t remember them now.
Best regards to you all,
Robert C.
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Unfortunately, I am just now finding out that things that have plagued me for years are symptoms of PD. I was recently diagnosed after referral to a neurologist and a DATscan. I have had increasing hand and face tremors for a number of years now, along with stiffness in my legs when walking. My worst (in my view) symptoms are excessive sweating and overactive bladder. I am lucky that I am still able to take care of myself and my home, but I am a little slower getting things done and not everything gets done!
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1) having trouble move my legs when I’m not on the medicine
2) notice my left arm stop swing when I walk, have to make it to swing
3) numbness of right side of my body, especially lower part of my leg
4) gait problems, hunchback, my upper body would lean forward without knowing until someone point it out.
5) taste bud and smell are not as sharp as before (1 year ago) -
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All symptoms?? Really? People with mid-stage PD have dozens of symptoms and/or side effects of the treatment. Sometimes it is hard to separate the two.
For me, 11 years post-diagnosis:
- Tremor
- Poor impulse control
- Dyskinesia (random head/shoulder movement – med side effect)
- Bradykinesia (freezing)
- Short term memory loss (“mild cognitive impairment”)
- Pain (dopamine is a pain modulator)
- Sexual dysfunction
- RBD (active dreams, usually violent and very real)
- Sleep disruption (wake up when the meds are off)
- Daytime sleepiness
- Difficulty swallowing, gagging
- Poor impulse control (saying the wrong thing at the wrong time)
- Dry eyes
- Dry mouth
- Drooling
- Constipation
- Urinary urgency (when the meds wear off)
- Pain (dopamine is a pain modulator – chronic pain increases when meds are off)
- Loss of balance
- Double vision
- Loss of facial expressiveness
So now what? 11 years into this, I am still able to do nearly everything I want to do, I just do it much slower and not as well. I have my woodworking hobby, electronics is out of the question now due to vision issues; some related to PD. We travel and go camping, though my wife is the primary driver now. We completed a 3800 mile trip last month; she drove about 3000 of them. I have not been on a bicycle in 5 years due to balance issues, but have a really nice recumbent trike. Life goes on.
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Right toes clenching. Restless leg. Internal tremors. Slight external in right hand. Slow movement on right side. Right hand is weaker with stiffness. Right arm doesn’t straighten anymore. Voice is changing. Sounds raspy. Speech can be slightly slurred sometimes. Constipation. Unpredictable digestion. Sense of smell mostly gone, but some days are better than others.
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I found a list of non-motor symptoms:
Dribbling of saliva during the daytime
Loss or change in your ability to taste or smell
Difficulty swallowing food or drink or problems with choking
Vomiting or feelings of sickness (nausea)
Constipation (less than 3 bowel movements a week) or having to strain to pass a stool (faeces)
Bowel (fecal) incontinence
Feeling that your bowel emptying is incomplete after having been to the toilet
A sense of urgency to pass urine makes you rush to the toilet
Getting up regularly at night to pass urine
Unexplained pains (not due to known conditions such as arthritis)
Unexplained change in weight (not due to change in diet)
Problems remembering things that have happened recently or forgetting to do things
Loss of interest in what is happening around you or doing things
Seeing or hearing things that you know or are told are not there
Difficulty concentrating or staying focussed
Feeling sad, ‘low’ or ‘blue’
Feeling anxious, frightened or panicky
Feeling less interested in sex or more interested in sex
Finding it difficult to have sex when you try
Feeling light headed, dizzy or weak standing from sitting or lying
Falling
Finding it difficult to stay awake during activities such as working, driving or eating
Difficulty getting to sleep at night or staying asleep at night
Intense, vivid dreams or frightening dreams
Talking or moving about in your sleep as if you are ‘acting’ out a dream
Unpleasant sensations in your legs at night or while resting, and a feeling that you need to move
Swelling of your legs
Excessive sweating
Double vision
Believing things are happening to you that other people say are not true
Dribbling of saliva during the nighttimeFrom this list of 31 items I have these:
Loss or change in your ability to taste or smell
Constipation (less than 3 bowel movements a week) or having to strain to pass a stool (faeces)
Feeling that your bowel emptying is incomplete after having been to the toilet
A sense of urgency to pass urine makes you rush to the toilet
Getting up regularly at night to pass urine
Unexplained pains (not due to known conditions such as arthritis)
Loss of interest in what is happening around you or doing things
Feeling less interested in sex or more interested in sex
Finding it difficult to have sex when you try
Finding it difficult to stay awake during activities such as working, driving or eating
Difficulty getting to sleep at night or staying asleep at night
Intense, vivid dreams or frightening dreams
Talking or moving about in your sleep as if you are ‘acting’ out a dream
Double vision
Dribbling of saliva during the nighttimePlus the motor symptoms:
Masking – no expression
Small handwriting
Soft speech
Slow movement and walking – Bradykinesia
Stooped posture
Freezing (during off periods)
Poor balance
Some tremor in hands when tired -
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After 11 years living with Parkinson´s I shouldn’t be surprised at how many symptoms are related to PD.
I am now convinced that hammer toes belong to the list. As well as double vision, cramps, trembles on the inside of the body, trouble turning in bed, stiffness, easily feeling stressed so that even though you don’t have trembling normally you do then! Too much saliva, too little saliva, phantom smells, “bad” posture, constipation. Clumsiness that makes it hard to navigate in a crowd without bumping into someone else. Soft voice. Micrographia–my mother had PD and this is one of the symptoms we noticed. She wrote so small that she couldn’t read what she wrote.
For some of these symptoms I have found some remedies.
Constipation= Microlax (in Europe where I live) it’s a mini enema.
Cramps = take magnesium
Turn in bed = put a silk section over your bottom sheet so you slide better
Soft voice = go to a speech therapist; join a choir!
Avoid being dragged into stressful situations = admit that stress if bad for us Parkies!
Apathy, feeling you can no longer contribute to society meaningfully = keep on doing the things you like to do. (For me that is woodworking and doing volunteer social work.)
And Mannitol has helped me get rid of quite a few symptoms, despite my new neurologist trying to convince me that it doesn’t help.
Have a Merry Christmas!
Tom
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I was diagnosed with PD in January 2018. I silently suffer from blurred vision, constipation for which I take miralax. I started having swallowing problems, but haven’t choked on food. I have hammer toe of my left great toe for which I get botox injections. I have dry skin, dry mouth which I associate with the Rytary that I take. I also have some feelings that I don’t know that could go along with Parkinson’s. Some times I feel tight sensations in my chest and abdomen. I do take lisinopril. Does any one else feel strange sensations?
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Just diagnosed Sept 2022, but have had these lovely symptoms occur rather impolitely over the past few years; (What a rude progression this disease has!)
resting tremors left hand
urinary incontinence
constipation
poor balance- not falling yet
slow movements
difficulty initiating movements after sitting
softer voice/slower speech
smaller handwriting
anxiety
Insomnia
fatigue
excessive sweating
visual processing and depth perception-especially at night
muscle rigidity – left side
left hand doesn’t swing while walking; hold left hand like a claw
dry eyes & mouth
apathy
brain fog
No meds at this time; hoping to participate in trials of new therapies, most of which want newly diagnosed and no PD meds currently;
since current modalities do not cure, slow down, or stop progression of PD, I’m willing to try new options.
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Edward Fritz
Thank you for your post.
I too, was recently diagnosed with MSA/PD (I fall in between these two) & share some of the symptoms you posted on 12/29/2022.
I have been reading the posts for about a month, though I haven’t replied or posted before this, however, what I’ve read has helped me greatly as I try to understand what I’ve been experiencing.
I find that many of the symptoms you pointed out are what I am experiencing & your post has helped me understand that I’m not alone.
Thank you for your information!
John
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My husband (age 76) was diagnosed PD 7 years ago. He is coping quite well in most areas thanks to levadopa, and controls his nightmares with clonazepan, but his blood pressure alternates from very low (including loss of consciousness sometimes) specially when he gets up from his chair after meals, to normal alternately during the day. Then during his sleep it shoots up to 180.
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I am 74 and was diagnosed with PD some 10 years ago. I had DBS surgery in 2021. Since then, I don’t have had hand tremors neither dyskinesia. I feel relatively well. I don`t have constipation, but it’s quite irregular. Since the operation, I take one pill of levodopa/carbidopa once a day in the morning, and 4 drops (0.2cc) of Clonazepam each night before trying to sleep
Besides, I have:
Short term memory loss. I even forget essential words when I speak.
Insomnia, and nightmares that feel quite real (in fact, I have fallen from my bed)
Tinnitus (hear high pitch noises all day) -don’t know if this is related to PD
Fatigue
Difficulty swallowing
Continuous flu and cough
Loss of balance
Dizziness and low blood pressure
My speech becomes slurred at times, in fact, sometimes I can’t understand it. This produces me lot of anguish.
However, whatever it is, my life has been quite better since the surgery.
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My wife Barbara had PD for over two decades before her passing due to a serious fall. The symptoms in her later years became increasingly noticeable especially in the last five years of her life. She had no tremors, but lost dexterity in her hands which was an unhappy event because she loved doing crafts. Most significant was the increase in loss of balance which caused numerous falls some more severe than others. She frequently would fall backwards into the bathtub and hitting her often with bleeding. She experienced voice changes and did take speech therapy. She also took physical therapy. Her mobility was mainly affected by the balance issues. I noticed that when she had something in her hands while walking she seemed to not focus on her walking. So I told her not to carry anything while walking. But one thing that really concerned me and I would like to hear some responses on it. Since we were both retired there was little time we were not together in the house, I bought some pendant push buttons that alerted me if outside or inside the house if she had a fall. Rarely, did she push the button after a fall and she was never incapacitated to the point that would have prevented it.
Visual and auditory hallucinations became more frequent in her last couple of years most often seeing and talking to our kids that were not present. -
These are the symptoms I have that I believe are related to my PD:
-Arm tremor
-Nerve pain in arm
-Body stiffness and pain
-Drooling, especially during night
-Nightmares where I sometimes act out my dreams (kicking, punching, etc)
-Anxiety for no reason
-I believe I have digestion issues that are a result of my PD
-Mood swings, mild depression at times
-Loss of fine motor control in my right hand.
-MicrographiaThere are probably others, but I probably have others that come and go.
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