via National Parkinson Foundation: Short and Long-Term Problems with Anticholinergic Drugs used for Sleep, Bladder, and Tremor Symptoms in Parkinson’s Disease Patients

You can find out more about NPF’s National Medical Director, Dr. Michael S. Okun, by also visiting the NPF Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson’s Best Seller 10 Secrets to a Happier Life.
  Parkinson’s disease patients frequently struggle to identify drug therapies that can address bothersome symptoms such as sleep dysfunction, bladder urgency, drooling, and tremor. Many of the drug therapies such as Benadryl (diphenhydramine), Advil PM, Alleve PM, common antihistamines, and others pills are readily available over the counter and do not require a prescription. These medications block a cholinergic receptor in the brain, and can improve many Parkinson’s disease symptoms. However, the price of taking these drugs may be steep (thinking problems, confusion, unsteadiness and even falling). An older French study of hospitalized Parkinson’s disease patients revealed that though 46% of all demented patients were confused, 93% on anticholinergic therapy had delirium and confusion when in the hospital (Agid et. al.). Deficiencies of the chemical acetylcholine have been reported to underpin thinking issues and shortages of the chemical have been observed in the brainstem, hippocampus, and cortex of Parkinson’s disease patients. Though anticholinergic use can result in drowsiness, dry mouth, urinary retention, memory problems as well as constipation, many patients find these therapies useful. In this month’s What’s Hot column we will address the short and long-term potential side effects of using of anti-cholinergic medications in Parkinson’s disease.
Cooper and colleagues in 1992 addressed thinking ability in a group of 82 freshly diagnosed and untreated Parkinson’s disease patients. The patients in this study were all randomized to receive levodopa (Sinemet), bromocriptine (a dopamine agonist) or an anticholinergic drug. Though all three treatments improved motor performance, the anticholinergic drugs produced memory impairments. Many subsequent studies including the National Parkinson Foundation QII prospective study have confirmed these findings.
Perry and colleagues in 2003 investigated the idea that blocking brain acetylcholine receptors could lead to more “Alzheimer’s changes” in the Parkinson’s disease brain. Interestingly, the researchers reported that an important marker of Alzheimer’s disease, the amyloid plaque density, was present in more than double the concentration in Parkinson’s disease patients treated with long-term anticholinergic therapy. Another marker of Alzheimer’s disease, the neurofibrillary tangle, was also more prominent in the brains of those taking anticholinergic drugs. 
The most recent worrisome evidence surrounding anticholinergic therapy is drawn from an article in a recent issue of JAMA Internal Medicine written by pharmacist Shelly Gray. The authors utilized data from the Adult Changes in Thought Study. The investigation was based in Washington state and had an impressive 3434 people enrolled who were 65 years or older. All study participants were screened at inclusion to be sure there was no evidence for dementia. The authors cleverly used computerized pharmacy data to assess each participant’s exposure to anticholinergic drugs. The most common anticholinergic drugs were old-fashioned tricyclic antidepressants (TCA’s), antihistamines, and also drugs used for bladder and sleep. The patients were followed for 7 years and the data revealed that over 20% were shown to develop dementia. Participants who took anticholinergic drugs for three years or more had a greater than 50% higher dementia risk. Also, a higher cumulative dose of anticholinergic drugs increased the risk for dementia when compared to those taking anticholinergic drugs for 90 days or less. 
The bottom line for Parkinson’s disease patients is that there should be a greater awareness of the short and the long-term potential side effects of anticholinergic therapy. Short-term, Parkinson’s disease patients should be aware that anticholinergics may precipitate drowsiness, dry mouth, urinary retention, memory problems, blurry vision, and constipation as well as a host of other side effects. Long-term, there is an increased risk of dementia. It is important for Parkinson’s disease patients to routinely review medication lists with both a doctor and a pharmacist and to try to identify other medication alternatives. 
Some practical suggestions include:

Identify alternative antidepressants with less anticholinergic effects

Watch out for over the counter drugs like Benadryl (diphenhydramine) and antihistamines

Dopamine agonists, levodopa, and deep brain stimulation can all potentially be used for difficult to control tremor instead of anticholinergics

Botulinuma toxin injections can be employed for drooling and for some cases of bladder dysfunction

Sometimes atropine drops under the tongue or chewing gum can be employed for drooling issues

A type of physical therapy referred to as pelvic floor rehabilitation can be helpful for bladder retraining in those with urinary frequency

If hospitalized be sure the doctors do not use anticholinergics for sleep or bladder dysfunction

Parkinson’s disease patients and their interdisciplinary care teams can usually work together to reduce or to eliminate anticholinergic drug use.

10 Signs You MIGHT Have Parkinson’s Disease

imageYou look like you have PD. You act like you have PD. You talk like you have PD. You feel like you have PD. You sound like you have PD. You smell like you have PD (It’s true!).

Point: All of the above may seem true, but it won’t necessarily mean you have Parkinson’s disease. Because this disease can mimic so many other neurological diseases, including Lyme disease, Multiple Sclerosis, and Lupus (to name just a few), it is extremely important to get an accurate diagnosis, and that could take years and several opinions of highly qualified doctors.

However, there are markers that are quite prevalent to Parkinson’s disease that should send you seeking a definitive diagnosis, no matter how long it takes.

Here are ten signs that you might have Parkinson’s disease, which exclude the biggie – tremors (because everyone usually associates that one with PD automatically).

  1. Loss of smell.  You notice flowers no longer have a fragrance. Ben-Gay doesn’t knock you out. You can’t smell dinner. If your nose isn’t constantly plugged up, it could be a sign of Parkinson’s disease.
  2. Loss of facial expression.  imagePeople ask why you look so sad. People ask why you look so unhappy. Although Parkinson’s disease can alter our moods and cause mild to severe depression, what they are seeing is the affects that PD has on facial muscles. Doesn’t that make you oh, so happy?
  3. Gait.  You trip often. Perhaps even fall. You notice one of your feet won’t keep up with the other and drags somewhat. You may have a shuffling effect like that of a penguin when you walk. No, you are not part bird. You might have PD.
  4. Soft voice.  People tell you to speak up. People are always saying “What?” when you speak, as if they aren’t even listening. They tell you to not speak so softly. You may not be able to help it if it’s Parkinson’s.
  5. Dystonia.  Do your toes tend to curl under in pain? Your muscles seize up and hurt like the dickens? You might be able to blame the disease.
  6. Handwriting.  Did you once get praised for your handwriting? How lovely, legible and readable it was and now it’s barely more than scribble? Could be…
  7. Stiffness/Rigidity.  Is your neck often stiff? An ache in the shoulders/neck area/back? Hmmm…
  8. Balance.  Some people have actually been stopped by authorities who have thought they are dealing with someone who is intoxicated because of the way they are walking. Nope. Just Parkinson’s, but it might make you want to drink.
  9. Non-Swinging Arm.  Someone asks you why only one of your arms swings while you walk. MICHAEL J FOXSomeone asked Michael J. Fox that same question while he was jogging. His wife. That sent him to the doctor, which for him, was the beginning of a new journey…
  10. Doctor’s opinion.  
    Dr. Santiago, Boo's Black Doggy, and me after  first programming of DBS stimulator.
    Dr. Santiago (a great MDS), Boo’s Black Doggy, and me after my first programming of DBS stimulator. Muhammad Ali Parkinson’s Center, Pheonix, Arizona.
    What?!? Yes, a doctor’s opinion may be a sign you have PD and I say MIGHT because doctors are not gods and they make mistakes and get it wrong. With Parkinson’s disease, it is not uncommon to be misdiagnosed the first, second, even third go around. As said earlier, it mimics so many other diseases that it can be difficult for some neurologists to diagnose accurately, which is why a doctor’s opinion MIGHT be a sign that you have PD and, in the same respect, that you DON’T have PD.

If you are concerned you may have PD because you’re showing any of the signs above, the best point of action is to make an appointment with a good neurologist – one that has experience with Parkinson’s disease or, better yet, a Movement Disorder Specialist (a neurologist who specializes in movement disorders specifically). And if you don’t like the first diagnosis, get another one. If they differ, get another one. Don’t stop until you are satisfied that you have the correct diagnosis and peace of mind over what you are dealing with. It might not be the greatest news you’ve ever gotten, but at least you’ll know what you’re up against and what you’ll need for your new journey.

For Those Who Hurt

An Interpretation of Psalm 28 for those who are hurting

MICHAEL J FOXYou have Parkinson’s disease. Or maybe it’s cancer. MS. Crone’s disease. Depression. Or, maybe an addiction. Perhaps a habit you want to break but can’t seem to do it. The Lord is your light, guiding you on this journey of life, whatever your struggle.

If the Lord is your light, what is it that you fear? If the Lord is the stronghold in your life, what is it that you afraid of?

When thoughts of giving up or giving in come upon you in an effort to eat away at our peace and confidence in Him, they will be thwarted. When we are attacked from every side and those thoughts seek to break our spirit and render us useless – they will be cast away.

Though an onslaught of useless, hopeless thoughts try to make a place for themselves in our life – thoughts like, “What if this happens?” or “What if that happens?” – even at moments like that… we can be confident. Content. Comforted.

We can approach Him with confidence, with faith as small as a mustard seed in search of the greatest desires of our hearts. We can approach Him without fear. We can seek Him for eternal blessings, comfort in knowing that we will dwell with Him for all our days, our nights and know that in the moments of our sorrows and our joys and yes, even in the moments through our sicknesses and diseases and all the fears that seem to be a part of the package- He can be found.  We can find Him in His glory and majesty, waiting to extend His blessings of comfort and safety. We can find Him waiting to shelter us under his wings of strength. Willing and wanting to be our refuge. The Refuge we eagerly run to. The One we confide in. The One we cling to.MAN - SAD

When we find comfort in Him, He holds us up when we cannot sustain ourselves. He gives us strength when we are weak. His strength. He gives us comfort when we feel our bodies are failing. His comfort. He gives us a spirit to fight when faced with fear. His spirit. And He gives us joy for our journey.  His joy. When we find this sweet spot, this place of rest, we are filled with an peace that surpasses understanding and we find delight in God.

There are times we cry out, “Hear me God! Hear me! I am crying out to you! Have compassion on me. Show me kindness, gentleness, grace. Answer me. Please!”

We run and chase after Him, desiring Him and Him alone. Is He hiding? Does He really care? Have we angered Him? Is He turning away from us as He turned from Christ in that dark moment upon the cross? Is this our cross to bear and must we bear it alone? Are these the fears that inhabit that utter darkness of despair?

Again, we cry out.

Lord, God, Father, Jesus, Holy Spirit… do not play this game of hide and seek. Do not turn me away. Forgive me Lord, discipline me, rebuke me – anything! But do not leave me!”

All is still.

Quiet.

Do we dare to demand of Almighty God like that?!

King David did. 

Yet, God still loved him and listened to his cries. Even called him friend. David was honest to the core.

We may be honest, as well. Not because David was but because God allows us to be.

So quietly and softly we say  it.

We feel it.

We express it.

After we cry out, “Do not leave me like so many others have done before,” and then convicted, we add, “Like I have done to You.”

We sit there. Emptied of the fight. Weak and yet renewed by His grace. Strengthened with His peace. Humbled because of His faithfulness. Restored with His truth

As it washes over us – a merciful love that knows no conditions, knows no bounds – we sit there and in a soft whisper we plead, “Teach me to be still Lord, to walk in faith and trust you in each step.  May I not waver because of my fears. Do not let them defeat me. They continually seek to destroy my peace, my state of mind, the truth that You still care.”

We take a deep breath. Faith is restored. Trust takes over and fears falter.

“I am confident Lord, that I will see your goodness here on this earth, in the land of those who are living and so… I will wait. In trust and with faith, I will wait.

“Because of You, I will be strong and have hope. I will have an unquenchable courage that trusts in a loving God who fights for me. I will hope for the best, and anticipate the better. I will depend on you to dissipate the darkness in my days and to revive and renew me when the lot of despair threatens to press me down. And, as I wait, I will wait in wonder, watching for Your hand to work in me, while You work for me. And as I wait, I will fall on my knees and You will lift me up.”

10 Things A Parkinson’s Patient Wants

  1. To feel good.
  2. To smell (what’s baking in the oven).
  3. To have people believe that the person with PD isn’t pretending to have a chronic disease. Really. We have better things to do.
  4. For others to understand that although they can’t see all of the effects, the disease is real.
  5. More dopamine. We gotta have more cow bell dopamine.
  6. To not shake all the time. It would be so nice to stir our coffee because we want to.
  7. For others to be aware of the struggles and invisible symptoms people with Parkinson’s face so that they are better able to understand the fervency and urgency of a cure.
  8. To find a drug that doesn’t knock you out for half the day, but instead, knocks out PD.
  9. A plastic bat to hit others over the head when they make thoughtless comments.
  10. A cure. 

That’s all.

Sleeping With the Enemy

Artwork by Sherri Woodbridge Copyright 2011
Artwork by Sherri Woodbridge
Copyright 2011

My first few years with Parkinson’s were crazy. Trying to get the timing of the drugs right, the dosages, the amounts, dealing with side effects. Looking back, I think one of the most frustrating aspects to the drugs was how sleepy they made me.  But because of the Parkinson’s itself, when everyone else was laying their head on soft pillows at night, dozing into blissful moments of deep sleep and already dreaming dreams, I  was chatting online with a new friend who also found herself in my shoes – unable to sleep in the wee hours of the night and morning because we had Parkinson’s disease.

When you think of PD, you usually picture someone shaking, but there’s more to it than that. Like wreaking havoc with your – what was once known as – sleep pattern. Ah, what we wouldn’t give to be able to sleep like a baby again, but that is actually what we do. We sleep like babies. Up and down all through the night, sometimes awaking from bad dreams, sometimes too hot from night sweats, sometimes awaking in fear due to nightmares from the drugs we take.

What to do, what to do.

Here are  a few suggestions to making sleep more attainable. Everyone’s different, so what works for some, may not work for all.

  1.  Put on relaxing music. Quietly, as everyone else is sleeping, remember? My daughter can only fall asleep with her ear plugs in and listening to music as she tries to fall asleep.
  2. Read a book. Preferably a boring one.
  3.  Make sure you’ve taken your medications. If I miss my evening dose, I am almost always guaranteed to have battle with the restless leg syndrome monster and that guarantees me at least an hour and a half more of not being able to sleep.
  4. There is a plethora of sleeping aides on the drug store shelf. Some recommend one over the other, but it comes down to what works best for you, if they’re giong to be helpful at all. It’s a good idea to run it by your doctor first before adding more drug substances to your mix.
  5. Essential oils are the rage and there is actually a mixture for sleeping that my daughter introduced me to that you rub on your feet. Her oil rep made her own mixture so you’d have to contact a Doterra rep or someone who knows essential oils.
  6. Many people are going for other remedies which I cannot recommend given I haven’t and don’t intend to try them, but they swear by their effectiveness (one  being medical marajuana).
  7. Melatonin seems to be a very popular sleep aid for people who find it difficult to sleep and is natural.
  8. Sleep-time tea, Nighty-nite tea… There are also many teas to relax  and  help you get to sleep. Check your grocer’s shelves.
  9. A technique that I have found that works for me is, as I am laying in bed (and maybe oddly enough, I can only fall asleep in one position) I intentionally make my body relax and then begin to pray. It works 100% of the time.

What is your suggestion on sleeping with the enemy – Parkinson’s disease?

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