[katherinesherpa]

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.

[katherinesherpa]

I take 0.5 mg every night at bedtime. I sleep like a baby, and have no sleep-associated problems. I started taking it 25 years ago, along with an antidepressant, to help with sleep. Some people might find that it adversely affects their balance in the daytime, so it wouldn’t be safe for them to take. In addition, as we age, our body is slower to clear medications. As a result, a smaller dose — e.g. 0.25 mg — might be safer for some people. Also, if necessary, Clonazepam can even be stretch to every other day, because it has a long “half-life” (it stays in the body for longer than 24 hours). Hope this helps.

[katherinesherpa]

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.

[katherinesherpa]

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.

[katherinesherpa]

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!

[katherinesherpa]

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!

[katherinesherpa]

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.

[katherinesherpa]

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!

[katherinesherpa]

Hi Marlene,

I love your litter box story!!

[katherinesherpa]

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!

[katherinesherpa]

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.

[katherinesherpa]

xoxo

[katherinesherpa]

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

[katherinesherpa]

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

[katherinesherpa]

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?

[katherinesherpa]

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).

[katherinesherpa]

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.

[katherinesherpa]

Wonderful to hear!

[katherinesherpa]

If the symptoms were not present when you were taking the Clonazepam, but started when the medication was discontinued, I think that the medication WAS treating your PARKINSON’S. I don’t understand why your doctor thinks it’s “either/or”. Why stop a drug if it was blocking some of the miserable CNS (Central Nervous System) symptoms of PD? I’m a doctor (retired), with one of my Internships in Neurology (granted, 40 years ago!) I practiced as a Psychiatrist for more than 30 years. Feel free to tell him/her that, as far I understand the problem, there is no reason for you to stop the Clonazepam. [Just FYI: I have Parkinson’s AND I take Clonazepam, and sleep like a baby. No nightmares, no nocturnal movements. May also be worth mentioning to him/her.]

[katherinesherpa]

I’ve calculated 20 problems (mostly autonomic nervous system, but not all) which are rarely considered by laypeople– AND doctors — caused by Parkinson’s disease.  Sometime I will list them all here.  For now, I agree 100% with what you say about PD affecting virtually every  part of the body.  I hope that your cardiac problems can get straightened out to your satisfaction.

[katherinesherpa]

Wow!  PVC’s can be deadly.  Thank God you survived them.

[katherinesherpa]

Hi Jorge,

In the summer of 2021, I began having a creepy feeling in my chest (heart area) which felt like a fish “flip-flopping”.  I was 68 years old and had PD for 7 years at that time.  My  Internist ordered a 10-day holter monitor, and then said that it was “normal”.  I knew that something was wrong, and requested a referral to a Cardiologist who immediately made the correct diagnosis.  I was on a hypertensive medication called Lisinopril.  The Cardiologist added a second anti-HTN medication called Diltiazem 120 mg.  Initially I was started on the medication once a day, but by evening the symptoms were back, so the dose was increased to 120 mg twice a day.  NO symptoms since!  I wouldn’t expect a Neurologist to have much expertise in this area (mine didn’t), but you are correct to go to a Cardiologist.  You put it as “Cardiologists” — i.e., plural.  How many have you seen?  Are any of them practicing in a large “teaching hospital”?  WHAT TESTS have been done?  I am concerned about your symptoms.  Someone needs to get to the bottom of this.  There’s something called “enjoyment of life”.  It is not the same as “life threatening”.  My symptoms were not life threatening”, but boy!  Do I feel SO much better now that I’m being properly treated!  (P.S.  I am a doctor.  I had to retire at age 59 b/o disability.  I was a Psychiatrist, so Internal Medicine and Neurology were both in my past — although I did Internships in both.  Yes, really.  So I do have some sense of what I’m talking about.)

[katherinesherpa]

SL means sub-lingual, under the tongue.  Bypasses the gut.

[katherinesherpa]

I can’t even read my own handwriting anymore. It has been incredibly difficult, as I wrote by hand at least 10 hours every day before I got PD. Typing is not easy — and it is absolutely NOT the same as writing by hand, which felt almost like an art for me.