Shaky Ladies - Insider Information for Women with Parkinson's Disease

06/16/2025

Last spot!

Coach Dave and I are getting super excited for our FIRST EVER Fit and Fearless Foundations session, starting July 8th, 2025! We've got ONE spot left in our July session - who wants it???..
Fit and Fearless is:
✅ Adaptive Martial Arts designed to improve your strength, balance and reaction time
✅ Designed to teach you the skills you need to fall safely and reduce your risk of injury
✅ For older adults and people with Parkinson's Disease - no marital arts experience needed!
✅ Co-taught by Muay Thai Coach Dave Lyons and Dr. Katie Wadland, PT, DPT, GCS
✅ Going to be super fun, super amazing and super effective all at the same time. ..
Learn more and sign up here: https://healthyagingpt.com/fit-and-fearless ..
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🏡 HAPT IS AT-HOME PHYSICAL & OCCUPATIONAL THERAPY + COMMUNITY FITNESS:
🌟 Balance and Fall Prevention
🌟 Orthopedic Pain and Injuries
🌟 Parkinson's Disease Specialty Program
🌟 Vestibular Rehabilitation for Dizziness
🌟 Osteoporosis Consultations & Management
🌟 Private Physical and Occupational Therapy
🌟 Personal Training + Health Coaching
🌟 Strength + Balance Classes at Local Senior Centers
🌟 Virtual Fitness Classes through the OsteoCLUB
🌍 Care available in Arlington, Belmont, Danvers, Lynnfield, Malden, Medford, Melrose, Middleton, North Reading, Peabody, Reading, Saugus, Stoneham, Wakefield, Wi******er, and Woburn, Massachusetts
📞 Call (617) 398-4508 or visit us on the web to schedule your evaluation today!
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Defensive Edge Martial Arts Center, Wakefield MA

06/07/2025

Version three

V3. A Manifesto for Movement Disorder Specialists

What You Can’t Learn in Medical School
1. Not all movement is therapeutic.
A patient forcing herself to lift weights through searing back pain is not “fighting Parkinson’s.” She’s surviving it, sometimes in silence, because she’s afraid to look like she’s giving up.
2. We are not all wired the same.
Some of us don’t thrive on reps and sets. Some of us thrive on rearranging the pantry, hauling a suitcase, or playing tag with a grandchild. That counts as movement too.
3. Pain is not weakness. It is information.
If a patient says, “I feel better when I stop exercising,” that’s not defiance. It’s data. Listen to it.
4. You cannot measure our success by our compliance.
The gold standard should not be whether we followed the protocol. It should be whether we feel better in our own skin.
5. Sometimes we need permission to quit.
Not to quit living. To quit hurting ourselves in the name of staying “on track.” Especially if the track we’re on is paved with guilt.
6. Movement should feel like freedom, not punishment.
If your recommendation feels like a burden—if it adds pain instead of easing it—consider the possibility that it may not be right for this body at this stage in this life.
7. The most powerful exercise I do now is saying no.
No to what hurts. No to what’s prescribed without nuance. No to pain in disguise as progress.

⸻

If you want to help me—and others like me—don’t just ask how many minutes I’ve exercised this week. Ask if I feel better afterward. Ask if it brings me joy. Ask if I dread it.

And if I tell you I feel best when my trainer is on vacation… believe me.

06/07/2025

Version two

V2 Chapter: When Exercise Hurts

It’s probably heresy to say this out loud, but here goes:

I feel my best when my trainer is on vacation.

There. I said it.

Let me back up. I’ve been a lifelong mover. Not an athlete—not even close. I’ve never played team sports. I couldn’t hula hoop. I broke a leg the second time I tried skiing. I have no moves. But I’ve always needed to move. Not competitively, not for show, just… to feel right.

Walking, mostly. Hiking, swimming, treadmills. Through most of my adult life, exercise has been the way I stayed afloat, mentally and physically. It wasn’t about a six-pack or a race time. It was how I processed the world, how I slept, how I coped.

So naturally, when I was diagnosed with Parkinson’s, I doubled down.

The message from the experts was loud and unanimous:

“Exercise, exercise, exercise.”
“It’s the only thing we know slows progression.”
“Use it or lose it.”

I took that advice to heart. I went to the gym. I hired a trainer. I showed up—twice a week, every week. I lifted weights. I lunged. I twisted and torqued and tried to do the moves even when my body said no. And through it all, I was in pain.

Specifically, back pain. Sometimes shoulder pain. Sometimes just pain-pain, the kind that wears you down and makes you wonder how much of this is helping versus how much is just habit.

I blamed myself, of course. I figured I wasn’t doing it right. Maybe I was too stiff, too weak, too slow. Parkinson’s is a master of blame. It makes you second-guess everything.

But then something interesting happened. My trainer went on vacation.

And I started to feel… better.

The back pain began to ease. I was still moving plenty. I didn’t sit around. I didn’t “give up.” I rearranged furniture. I climbed up to top shelves. I took long walks. I hauled bags. I stayed on my feet almost all day. But I stopped doing the exercises that had been handed to me—the ones that required me to contort, twist, and lift in unnatural ways.

And my body, for the first time in months, stopped screaming.

That moment was like a door unlocking.

I wrote down what made me feel good—truly good, not just what I was told should feel good. The list surprised me:
• I feel best when I’m with my grandchildren.
• I feel best when I’m with people I know.
• I feel best when my trainer is on vacation.

There it was. In my own handwriting. My body had been telling me for a long time, but I hadn’t listened:
Sometimes, “doing the right thing” doesn’t feel right at all.

And now I’m ready to say this even louder:

06/07/2025

CHAT GPT wrote with me three versions of this same issue. It’s not half bad! Version one

Chapter Working Out My Truth
(a draft reflection based on your message)

I’ve been a lifelong mover—not a natural athlete, not a team-sport type, but someone who always had to keep moving. For decades, I walked. I joined gyms. I sweated it out. After Parkinson’s came into the picture, I doubled down—two sessions a week with a trainer, plus independent workouts. I was what you’d call a gym rat.

And I was always in pain.

I blamed my twisting torso, the rigidity of Parkinson’s, the unpredictability of my gait. But recently, something shifted—not in my spine, but in my thinking.

I wrote down what makes me feel better, truly better. And there it was, in plain language:
• I feel best with my grandchildren.
• I feel best with people I know.
• I feel best… when my trainer is on vacation.

At first, it made me laugh. Then it made me pause.

Because I wasn’t just joking. I realized something big:
All that exercise I was doing—the kind everyone says is essential for Parkinson’s—was actually making me feel worse.

It wasn’t that I was inactive. I still don’t sit still. I walk. I climb. I rearrange furniture. I lift heavy things off high shelves and move them across the room if they don’t look quite right. My life is movement.

But formal exercise—especially with weights—was causing me pain. Chronic back pain. Fatigue. A feeling of misalignment, like I was asking my body to move in ways it no longer wanted to.

Since stepping away from those workouts, I feel so much better. My pain has lessened. I haven’t turned into a couch potato—I’m still always in motion—but it’s my motion. It’s natural, and it works with my body instead of against it.

Maybe I was trying to “fix” something that didn’t want to be fixed that way. Maybe my body was asking me to listen, not to push.

⸻

05/18/2025

this is what I have discovered for myself, as a patient. It may apply to some of what you are experiencing or seeing in your loved ones.

1. Depression and anxiety, maybe one of the same. Irregardless they are both treated the same way.

2. There are different kinds of depression and Parkinson’s depression is not the same as depression in the general population.

3. Different kinds of depression are treated differently, but you can have more than one kind of depression.

Again, when I use the word depression, I am referring to both depression and anxiety.

4. Depression is not a lack of gratitude. Nor is it a reaction to the diagnosis. Grief is a reaction to the diagnosis. Depression is a result of alterations in certain neural transmitters.

5. Ignore the research. Really messed up conclusions.

6. Every single person I know with Parkinson’s has depression/anxiety.

7. Lorazepam is designed to be short acting. Antidepressants like the one that I take, citalopram, are antidepressants and anti anxiety agents designed to be taken for long periods of time. They don’t make me sleepy.

8. Taking Celexa has improved my cognition. Reduced my brain fog. Helps many non-motor symptoms. My Parkinson’s meds are nowhere near as effective as they are when taken with the depressant.

There is no blame, shame, or failure to cope with the disease when talking about depression, anxiety. It is simply due to the same chemistry that causes tremors, etc.

There’s no one in any of my support groups who is not on an antidepressant.

Most of us experience, anxiety in a bad way as our medications are wearing off. Many of us experience, revved up, kind of keyed up anxiety when our medicines are peak dose

Depression and anxiety that is caused by the fluctuations of our medication is not helped by antidepressants. It is helped by a regulation and of our medication. By regulation, I mean, experimenting with dosages and spacing of time.

Constipation and protein interfere with the absorption of the drug and you get better at it overtime, but there’s no way to make us plans that everything goes perfectly right all the time. Every day every dosage is an adjustment.

There are a lot of different ways to take the medicine.

For example, I thought that there was a maximum number of don’t believe a dopa. I could take it one time.

I’ve experimented with that with the cooperation and supervision of my doctor and in fact what I believe for the last 20 years actually is not relevant anymore.

The bottom line as you constantly have to be adjusting and thinking about medications and when you take them and what they’re doing and it’s not a quick and easy answer, but I can tell you for sure that and if you are seeing your loved ones having panic and anxiety attacks , that it is due to the levels of medication in their syste

I can tell you that the short act again depressants are not the answer for my experience

and that ideally you should wait at least four weeks to make between making any changes in medication‘s. Make one change at a time and track it carefully. It takes at least a month for your brain to adjust to change your medication. You will know when your brain is adjusted when you start having a predictable response to the medication. You won’t know if you’re having unpredictable response unless you are keeping careful log.

you really don’t need to keep a log of each symptom and what’s happening. It’s useful just to keep a log of when you’re on and off. And maybe when you eat protein, but you don’t need to put in every symptom and when it starts and stops.

Hope this helps

05/17/2025

I have done nothing today other than play with AI. I asked AI to make a parody of the Dwight Yoakam song, “fast as You“ using the title “slow as me“ and basing it on the symptoms of Parkinson’s disease.

Between ChatGPT and Suno: here’s what I got! Now I’m going to eat breakfast!

Listen and make your own on Suno.

04/22/2025

I can highly recommend this video! I made a change in my meds from this. video for past 2 days and I am getting a full 3 hours of on time and off is better. up from 2.15 hours...comment if you watch it...learn stuff?

https://youtu.be/622-9cywjhg?si=hHsSEr46MPbizk-N

04/10/2025

The physicians assistant was taking my blood pressure the other day, and I suppose she was trying to calm me down by saying "Breathe in. Breath out... Breathe in. Breathe out."

I had to.ask her, "Is there any other way?"

04/04/2025

PATIENTS HAVE PROBLEMS, BUT DOCTORS ONLY TREAT SYMPTOMS: SPEECH PROBLEMS

Parkinson’s requires a lot of problem-solving. It is like a game of whack-a-mole. You knock one problem down, and another pops up. Here's a top-down. Look at my experience with speech and swallowing problems broken down into ⅓’s.

First third of my disease, 0-8 years AD [After Diagnosis]

At times, my voice was softer. I don't know if it correlated with medication fluctuations because I'm not sure if I was having fluctuations then. I have a slight slur in my speech at times. I had some word behavioral problems, but that was linked to taking Artane. I really didn't have much in the way of significant speech problems.

Second and third third of my disease, 8-15, 15-22 years AD [After Diagnosis]

Some volume issues with my voice and lack of clarity. I always sound like I need to clear my throat. I was passing the Google test (simply use your Google voice recognition system and see how accurate or accurate it is] but not the more difficult, but way more fun, Comcast Customer Service Test, because when they can't understand you, they get nasty and yell at you!

I started having cognitive speech problems at this time. I had what is referred to as "pressurize speech,” when my speech comes out before the thoughts are fully formed. Often, that speech is slurred. Often, the words that come out are closely related to the ones I am looking for, but not quite on it. For those of you who remember the card catalog in the library, I referred to this problem as right drawer, wrong card. I could not be heard in a loud environment. This is a really good example of how Parkinson's symptoms just don't exist on their own. Many patients and also some of our doctors think of speech problems and Parkinson's as a lack of strength to push out volume. If we just practice being louder, we will eventually be louder by strengthening the muscles that cause loudness. But it is way more complicated than that.

Parkinson's rigidity affects all kinds of muscles, including muscles in the back of our tongue, muscles that hold the little flap from my throat to esophagus in place, and whatever muscles are used to swallow. Postural instability and misalignment affect our ability to swallow.

Supposedly, 10% of Parkinson's patients have PISA syndrome, which is often confused with severe scoliosis. I have PISA syndrome, which twists my rib cage and bends me at the waist between 15 and 45 degrees right when I stand. I'm 5 foot three standing and 5 foot six lying down on the floor. When I stand my rib cage on the right side, overlaps my pelvis by 2 inches. This compresses my lungs and makes it difficult to bring air into the lower lobes.

it is not uncommon for Parkinson's patients to develop severe heartburn, which many doctors presume is GERD, and prescribe antacids without doing a full exam. This happened to me during Covid, during a telephone visit with my primary care physician. Sounding like GERD, I was started on antacids. Symptoms became worse, and the second anti-acid was added. Taking an acid when you don't need it can eventually cause problems with your esophagus. Some people believe Parkinson's patients have lower stomach acid. All I know is that I saw an ENT after COVID-19, who found the source of my hoarse voice, but there was no indication of GERD. This presumption of GERD and treatment with antacids without doing procedures to look into the esophagus, etc., seems like it happens quite a bit. What my ENT found was a tremor on one side of my vocal cords, a finding he says he would have missed had his father-in-law not had Parkinson's.

What I have since learned is that vocal cords are responsible for swallowing and that in order to close the airways completely, the right side of the cords need to close simultaneously with the left side. When they don't, it's like trying to trap a fly with an open newspaper if one side is dragging. I was grinding my teeth at night, and I got a mouthguard for my upper teeth. I find I sleep better with a mouth garden. Now I kind of know why. Somehow, it's in the mix of the throat and the tendency for Parkinson's patients to have a weak muscle in the back of their tongue.

The weak muscle, the swallowing, the breathing, the tendency to drool and have a runny nose on one side, the inability to get rid of phlegm, all related. All in, I hyperventilate when my meds are wearing off. I have dyskinetic breathing when my levodo-dopa levels peak, and I get out of breath doing nothing. I can be so out of breath that I can’t find the right moment to drink, and water is higher risk then. My stomach can fill with my diaphragm and I feel so full I can’t take a sip of water. When I am tipped over, I have to brace myself, standing, with my right arm causing chronic overuse pinching pain in my shoulder. Top that off with vertigo caused by osteoporosis, and i have to hang onto my rollator even in my apt.

These symptoms wax and weigh with my medication fluctuations every two hours or so, in my 20 for 30 minutes of airtime comes to speak. I have to decide whether I eat or place a phone call, etc. People get frustrated because I can't return my calls promptly. And I'm sure that happens to many other patients reading this. So I hope this helps you understand why it's so hard to talk to us on the phone or in person, etc.

that's all that that approaching interferes with the absorption of our medication such that we cannot have protein in our small intestines either an hour before or an hour after taking medication and I take medication every 2 1/2 hours. It leaves a very small window of opportunity to take food or proteins, and tries I might, it is hard to keep weight on. I was 157 when COVID-19 started. I have been down low, which was 103, and I'm maintaining 110 now, but it is not easy.

It's also important to bring this out because there's so much talk about socialization and isolation. People tend to associate that with old people with Parkinson's that affects all of us who are not old, but who have advancing symptoms because it doesn't leave a lot of time for socializing, and not much wiggle room in the schedule. This is a very high-maintenance disease. And frankly, I haven't even covered all of the problems involved with speech because writing all this takes an entire medication cycle for me. And I get behind on my eating and drinking.

Call now to connect with business.

03/31/2025

https://www.gettingparkinsons.com/

I’ve been putting some posts online.

As one of the leading local businesses in the San Francisco area, we attribute our reputation to the lasting customer relationships we’ve developed throughout the years. We believe that all of our customers deserve the highest level of service, and we are committed to providing just that. Explore ...

03/31/2025

more

As one of the leading local businesses in the San Francisco area, we attribute our reputation to the lasting customer relationships we’ve developed throughout the years. We believe that all of our customers deserve the highest level of service, and we are committed to providing just that. Explore ...