What are all of your symptoms that are PD related. Please list them.

[Kim]

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 palpitations

I’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!

[Dave Green]

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>

[Ann Perkins]

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…

[Toni Shapiro]

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!

[Robert]

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.

 

 

 

[Carol Hardbarger]

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!

[Christine P.]

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)

[marknicholson]

LH and left leg Tremor for six years.

Violent dreams

[Sherman Paskett]

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:

1. Tremor
2. Poor impulse control
3. Dyskinesia (random head/shoulder movement – med side effect)
4. Bradykinesia (freezing)
5. Short term memory loss (“mild cognitive impairment”)
6. Pain (dopamine is a pain modulator)
7. Sexual dysfunction
8. RBD (active dreams, usually violent and very real)
9. Sleep disruption (wake up when the meds are off)
10. Daytime sleepiness
11. Difficulty swallowing, gagging
12. Poor impulse control (saying the wrong thing at the wrong time)
13. Dry eyes
14. Dry mouth
15. Drooling
16. Constipation
17. Urinary urgency (when the meds wear off)
18. Pain (dopamine is a pain modulator – chronic pain increases when meds are off)
19. Loss of balance
20. Double vision
21. 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.

[Joanna]

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.

[Hugh McCrackin]

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 nighttime

From 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 nighttime

Plus 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

[Rowland Nelken]

1. Wobbly walk, esp. when going down a slope or steps.

2. Less than smooth legato speech. Difficulty with rapid articulation.

[Thomas Rutschman]

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

 

 

 

 

 

 

 

 

[Deborah Moore]

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?

[Edward Fritz]

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.

 

[John]

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

 

[Carina Moore]

 

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.

 

[Leon Celnik]

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.

[Robert Horwitz]

My symptoms :

Balance
dyskinesia
Swallowing
Urinary urgency
Frequent urination
Shuffling in confined spaces

[Mike Stanhope]

Has anyone experienced breathing issues that are a result of pd?

[Barbara Ernest]

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.

[Matthew Ploof]

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.
-Micrographia

There are probably others, but I probably have others that come and go.

[Mary]

My 85 year old mother was diagnosed last year with a form of Parkinsonism, but they don’t know which one (apparently there are quite a few) and I’m trying to understand the difference.  I’m also trying to distinguish the difference between her disease or age.  Let’s start with tremors.  She has a slight tremor in her left hand, and the arm is super stiff. They call it dystonia, all her fingers on the left hand extremely curl up, she’s always tired, she’s severely depressed, can’t get up on her own, we have to walk her, her face looks frozen, and now her right hand is giving her trouble, she suffers from dry eye so bad, she tells me she has pain in the left arm (they are trying Botox for the pain) constipation, overactive bladder and I mean overactive! Her spine is curving, she’s starting to tell me she can’t take a step when she wants to so we have to wait a bit (kind of hard if she has to pee pee), she has trouble sleeping! There is no PD that runs in the family, I’m flabbergasted!

[Nonnie]

Can anyone share their experiences with Hemorrhoids (unfortunately, sometimes bleeding). I would greatly appreciate it. Anything from diet to treating them?