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

[Karlyn]

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.

 

 

[Den Russell]

Hand tremors

dysphagia

droolimg

blurred vision

dry skin

constipation

stumbling

drained of energy

memory loss

voice projection

Dennis

 

 

[William R]

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.

 

 

[ita]

What are all oh my symptoms ?  Where does one start.  My feet, especially toes. Spasm,  feet shaking. My left foot shoots out at a 45 angle & jumps up & down.

[Marlene Donnelly]

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

[Carol Hardbarger]

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.

[Marlene Donnelly]

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.

[Thomas Rutschman]

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

 

[Toni Shapiro]

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.

[Marla Klein]

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

[Katherine]

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 face

2. 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 abrasion

3. 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 asleep

17. 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.

[Doug Duane MaGee]

22 problems! That’s quite a few!!!!

[Andy C]

G’day my fellow PD Warriors and your families.

I am Andy, a 53-year-old Australian living in a beautifully calm and safe suburb of Mexico City with my soon to be wife Alejandra and our two dogs Chewbacca and Bella. Besides just sharing my symptoms I will share my story as believe we should always look at both sides of life Parkinson’s Disease.

I was diagnosed 4 years ago aged 49 at stage 3 Parkinson’s and now at 53, I am mid stage4. Below is my lengthy list of current symptoms and these are on top of my other conditions of Diabetes type 2 and neuropathy, COPD and chronic osteoarthritis and osteoporosis:

SKIN – dried skin, scaly legs face and scalp
EYES – vision diminishing every 6 months new prescription and dry eyes,
EARS – 60% hearing loss – hearing aids & NC Headphones for tv, radio & phone
NOSE – loss of smell and reduced sense of taste
SALIVA – drooling constantly (change shirts 2-3 x a day & always carry hand towel
ORAL – swallowing difficulties particularly red meats
VOICE – initially went raspy, and now very soft and I swallow my words.
GASTRO – Extreme constipation sometimes up to 7-8 days & constant chronic gas
INCONTINENCE — infrequent during day & overactive at night every 1 or so (I am on limited 1250ml total liquids diet, and it has helped, with only 1 coffee in the morning and the rest of the day sips of water or mineral water.)
FALLLING BLOOD PRESSURE – resulting dizziness and falling episodes.
CARDIAC ARRHYTHMIAS — mild arrhythmia
LIMBIDO – lost for over 8 years but I still have a warm and cuddling relationship.
DYSKINESIA – muscle cramping of hands & Fingers, Calf, hamstring and feet multiple times a day and sometimes whole-body seizures almost like Grand Mal seizures.
BRAKYNESIA – rigid, stooped posture and slowed movement,
FROZEN GAIT – Freezing and falling.
COLD TOLERANCE – can’t bear the cold, even today in Mexico City its 26C and I am wearing shorts, heavy track pants, 2 t-shirts, a hoody and sometimes a blanket and ugh boots.
HICCUPS/SNEEZING – almost one in the same longer lasting with a choking affect.
SLEEP – chronic insomnia, on average I sleep 2 – 3 a day, and few times a month I have narcoleptic episodes.
CLUMSINESS – combination sight, hearing, freezing gait.
FATIGUE – always.
DEPRESSION – yes, but I am constantly working on it.
DYSTONIA — yes
HALLUCINATIONS – both visual and oral regularly
MEMORY – short term memory, loss for words, names and numbers
LOST CONCEPT OF TIME: combination of many symptoms

I need help with basic things at home, can’t get out bed so generally remain all night in armchair or couch and use walking stick to get up.  I am housebound because I have gotten confused and lost quite a few times. Not allows to use stove or oven unless my fiancée is home; burnt to many pots dry.

Due to osteoarthritis & osteoporosis I have to have both shoulders totally replaced with reverse prosthetics and both hips need urgent replacement.

I try to stay positive and do a lot of coloring in and listening to audio books and reading kindle when I can.  I use dictating software for most of my writing, text and messaging.

My current focus self-help project is building a Lifetime of Memories Book that I hope will work as a memory jogger, as my memories further decline.  I am using a 600-page bound book where I stick in photos, email, memorable chats, comments from 100s of old colleagues via LinkedIn that i will print, add pictures & comments. I also add all my art stuff to show I was doing things to keep my eye hand coordination.

I still try to cook our dinners on weekends.

I spend hours cuddling and playing with my dogs Chewie (4yo Boston Terrier and Bella (16mth old) adopted mixed street dog. They also act as my eyes and ears.

My neurologist wants me to have an apomorphine pump inserted in my gut to get better management my on / off periods which are happening more frequently and lasting longer.

I will start seeing a psychologist in a few months to clear my head of the negativity I harbor from the stop working and social interactions, the process by which I was forced to leave my company and the extended legal battle and the worst was watching my dad ultimately die from Parkinson’s and dementia at aged 80 but only diagnosed in his early seventies, and not being able to be with due to my diagnosis and medical experimentation and the COVID period. Also, the frustration difficultly off getting my pension funds to accept that I was legally forced to Retire due permanent disability at age 51 by the Dutch Health and Labor Relations authorities 2 year but the funds are unwilling to budge as they any retirement is 55 earlies, This has left me to live of savings of which i have used to pay all medical, surgical, diagnostic and treatment cost as it all took place whilst on a work assignment in Mexico. So, 3 hospitalizations, multiple MRIs, CTs, X-rays and physio treatments and monthly medication costing about us$1500 per month.

There is hope now as the Australian Tax Authority and my Australian Pension have a early partial compassionate release for medical expenses which I am in process of applying for which will take away our current financial I have put on my fiancée the only earner in the household. This will allow us to have some of the urgent procedures like one shoulder replacement and apomorphine pump placement, then take a two week break somewhere very quiet so we can try and forget the negativity of the problems of last five years plan for the calm happiness of our lives, and then buy a 2-3 bedroom, 2 full bathrooms condo with a small enclosed courtyard which we will have one modified for my current and future needs such step elderly bath, Bed Lift pulley, and other safety features and have it finished paid up in within a year from now.  Leaving use safe and secure home for us and ultimately Ale after I pass.

So yes things could be better but i refuse to dwell on my situation, because I can lift my mood and stay bright and happy if Ale and I openly really talk about everything, finances, priorities and planning for the future. It gives me great comfort that everything that can be done will be done and I will a leave a legacy of security for my future wife with a fully owned new condo with all modern and green efficient appliances etc. and college funds my two daughters from a previous marriage.

I apologize for the long post, but I refuse to talk only about the negatives of Parkinson’s and the sudden and cruel cutting short of a successful career I truly loved. But with time to reflect and listening to others I have come to realize and recognize that there are truly positive reasons and purpose to still look forward to living on in whatever shape it takes.

Best wishes to all PD Warriors and their primary carers.
Never surrender, there is also hope.

Andy

(The Australian living out my time in blissful happiness in Mexico despite my health and disabilities because I have a supportive, understanding, best friend, carer, angel and future wife, Alejandra, and our two dogs and a great medical team.)

 

[Alan M]

Whoa! Now there’s a comprehensive listing! I’ll agree to most issues. I face these with much consternation. Can’t handle these most of the time.

[Richard]

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

[JB]

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.

[Nonnie]

Katherine, THANK YOU SO VERY MUCH for such a detailed list!! It is MUCH APPRECIATED!

YVONNE

[Toni Shapiro]

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.

[Dick Boynton]

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

 

[Toni Shapiro]

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.

[Dick Boynton]

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

[Robert Harris]

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.

 

[Patricia McCormick]

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.

[Katherine]

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,
Kathy

P.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.

[Dick Boynton]

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.

[Jennifer Blackstone]

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.

[Kim]

I have an itchy scalp as well. No dandruff.

[Judy Kay]

 

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

[Toni Shapiro]

Hi Judy, Same with me re sciatica.  I was surprised to learn the various PD issues that come from the spine.

[Jeffery Hill]

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.

[Toni Shapiro]

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.

[Katherine]

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.

[Patricia McCormick]

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.

[Katherine]

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).

[Patricia McCormick]

Katherine – What an ordeal you went through. Not being able to walk for that long had to have been tough. You are an amazing lady, too.

[Katherine]

xoxo

[Marlene Donnelly]

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.

[Katherine]

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?

[Marlene Donnelly]

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.

[Katherine]

That is such a sweet story: you were pointing in different directions, supervising your students! 🙂

[Mary Beth Skylis]

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.

[Katherine]

I think you’re on the right track. And it is something that no one wants to talk about, but it is important problem.

[Kathy Bloomberg-Rissman]

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

 

 

 

[Katherine]

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.

[John Citron]

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.

[Katherine]

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!

[Marlene Donnelly]

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.

[Katherine]

Hi Marlene,

I love your litter box story!!

[ita]

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.

[Katherine]

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!

[richard cooling]

In addition to the others mentioned, my eyes and nose weep in the evening and my toes curl under…

[Katherine]

I haven’t had the first symptom you mention. The second symptom you mention sounds very painful — like a charley horse in your feet. Is it? Magnesium twice a day has helped decrease the frequent of the ones I get in my calves.

[Elizabeth Frank]

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?)

[Katherine]

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.

[Michael John Duffy]

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.

[Katherine]

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!

[Katherine]

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!

[Jon Busch]

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.