Patient Corner
* ZOOM SHARING MEETINGS FOR PERSON WITH PARKINSON'S DISEASE
* SAFE SWALLOWING GUIDELINES
* OPTIONS FOR SAFER WALKING
* HINTS FOR FREEZING ISSUES
* MANAGING SYMPTOMS OF PARKINSON'S DISEASE
* HOSPITALIZATION
* MENTAL HEALTH CARE FOR PATIENT AND CAREGIVER, NEW
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Zoom Sharing Meetings for Person with Parkinson's Disease
Besides our monthly meetings in person, we are offering an opportunity via Zoom for the Person with Parkinson's (PWP) to share with other patients. The 1 PM meeting is open specifically for only patients, with Dr. Stu Gillim facilitating. Below is the information you need to enter the Zoom meeting. For each 2nd Wednesday of the month at 1PM, the link is the same for all of 2024. We suggest you save the link.
Copy and paste the Meeting Code below to join meeting.
https://us02web.zoom.us/j/84266002257?pwd=a0xjZmdjSEFHUW01ZHFQcjUwZUlvUT09
Safe Swallowing Guides
As the muscles in the throat decrease their natural response, some methods need to be used to aid in swallowing so as not to choke. You might want to try these suggestions from Jessica Zumbo, Speech Therapist.
1. Sit upright at the table or counter when eating or drinking and remain sitting up for at least 30-45 minutes after eating.
2. Take small bites and/or sips during a meal. CHEW COMPLETELY !
3. Eliminate distractions during meals such as watching TV. You might inadvertently lift your head while chewing or swallowing causing choking.
4. Tuck your chin before swallowing: liquids or solids.
5. Alternate food and drink during a meal
6. Avoid mixed consistency foods such as soups. If an item like soup is on the menu, ask your care partner to strain out the liquid from your serving, so you only have the main meat, vegetables, and possible starch such as rice/noodles.
7. If you hear a gurgly voice from yourself, clear it before you continue eating/drinking.
8. If you're having trouble with pills, mix them with applesauce to help swallowing them.
Options for Safer Walking
Please open the following link for the 4 tips for walking safer by Phil Horton who lives in Colorado Springs and who has been diagnosed with PD since 2014. We were not allowed to merely copy the 4 tips, but we could include his link in our website. We strongly recommend you check out this site.
www.brainandlife.org/the-magazine/online-exclusives/strong-voices-4-tips-for-improving-walking/?utm_source=Informz&utm_medium=Email&utm_campaign=21-BL&utm_content=Parkinsons-Spotlight-2
Put the "Freeze" on Freezing
Besides the tips below, go to the following 2 sites for additional U-tube information on freezing.
www.youtube.com/watch?v=BcSANzeSPD8
Are there any tips to use for freezing? - YouTube
1. Try another movement – raise an arm, touch your head, point to the ceiling; then re-start
2. Change direction: if you can’t move forward, try stepping sideways first, and then go forward
3. Carry a laser pointer in your pocket; when you freeze – shine the laser in front of your foot and step on the light – this visual cue can help you re-start.
4. Visualize an object on the ground in front of you and try to step over it.
5. Wear a metronome on your belt or carry a small one in your pocket – turn it on and the external beat can help you re-start.
6. Try humming a song and time your re-start with the beat of the music
7. Count “1-2-3-go” and then step forward
8. Shift your weight from side to side to help initiate taking a step
9. March in place a few times and then step forward
10. Don’t fight the freeze by trying harder to step forward – shift your attention from moving the legs to moving the arms – then resume walking forward.
Zoom Sharing Meetings for Person with Parkinson's Disease
Besides our monthly meetings in person, we are offering an opportunity via Zoom for the Person with Parkinson's (PWP) to share with other patients. The 1 PM meeting is open specifically for only patients, with Dr. Stu Gillim facilitating. Below is the information you need to enter the Zoom meeting. For each 2nd Wednesday of the month at 1PM, the link is the same for all of 2024. We suggest you save the link.
Copy and paste the Meeting Code below to join meeting.
https://us02web.zoom.us/j/84266002257?pwd=a0xjZmdjSEFHUW01ZHFQcjUwZUlvUT09
Safe Swallowing Guides
As the muscles in the throat decrease their natural response, some methods need to be used to aid in swallowing so as not to choke. You might want to try these suggestions from Jessica Zumbo, Speech Therapist.
1. Sit upright at the table or counter when eating or drinking and remain sitting up for at least 30-45 minutes after eating.
2. Take small bites and/or sips during a meal. CHEW COMPLETELY !
3. Eliminate distractions during meals such as watching TV. You might inadvertently lift your head while chewing or swallowing causing choking.
4. Tuck your chin before swallowing: liquids or solids.
5. Alternate food and drink during a meal
6. Avoid mixed consistency foods such as soups. If an item like soup is on the menu, ask your care partner to strain out the liquid from your serving, so you only have the main meat, vegetables, and possible starch such as rice/noodles.
7. If you hear a gurgly voice from yourself, clear it before you continue eating/drinking.
8. If you're having trouble with pills, mix them with applesauce to help swallowing them.
Options for Safer Walking
Please open the following link for the 4 tips for walking safer by Phil Horton who lives in Colorado Springs and who has been diagnosed with PD since 2014. We were not allowed to merely copy the 4 tips, but we could include his link in our website. We strongly recommend you check out this site.
www.brainandlife.org/the-magazine/online-exclusives/strong-voices-4-tips-for-improving-walking/?utm_source=Informz&utm_medium=Email&utm_campaign=21-BL&utm_content=Parkinsons-Spotlight-2
Put the "Freeze" on Freezing
Besides the tips below, go to the following 2 sites for additional U-tube information on freezing.
www.youtube.com/watch?v=BcSANzeSPD8
Are there any tips to use for freezing? - YouTube
1. Try another movement – raise an arm, touch your head, point to the ceiling; then re-start
2. Change direction: if you can’t move forward, try stepping sideways first, and then go forward
3. Carry a laser pointer in your pocket; when you freeze – shine the laser in front of your foot and step on the light – this visual cue can help you re-start.
4. Visualize an object on the ground in front of you and try to step over it.
5. Wear a metronome on your belt or carry a small one in your pocket – turn it on and the external beat can help you re-start.
6. Try humming a song and time your re-start with the beat of the music
7. Count “1-2-3-go” and then step forward
8. Shift your weight from side to side to help initiate taking a step
9. March in place a few times and then step forward
10. Don’t fight the freeze by trying harder to step forward – shift your attention from moving the legs to moving the arms – then resume walking forward.
Managing Symptoms of Parkinson's Disease: Notes from Dr. Stu Gillim's November 2023 Presentation
1. Educate yourself about symptoms and how to manage them. Be alert to new symptoms (they might not be from PD). Look for a pattern: when you take your meds, when and what you eat, when and what you are doing. Write down what you notice (Journaling).
2. Seek treatment by a multidisciplinary health team (movement disorder specialists) if possible.
3. Educate yourself about drug effects, side effects and interactions (www.drugs.com).
4. Improve symptoms without drugs
a. Physical activities such as those below have been shown to slow the progression of PD.
Activities that raise heart rate (cardio), strength training, physical therapy, treadmill training (intervals), stationary
bicycling (intervals), dance, yoga, massage therapy, boxing such as Rock Steady Boxing, Tai Chi for balance, rowing,
walking with walking poles, speech therapy such as LVST-big, or Speak Out helps swallowing and
prevents aspiration, possibly acupuncture (although it has had mixed reviews regarding its usefulness)
b. Psychosocial activities:
Enjoyable group activities, family support, support groups, relaxation therapy, mindfulness, social connections,
music therapy. Cognitive Behavioral Therapy performed by psychologist, psychiatric social worker, or psychiatrist
in person or on-line is very effective for anxiety, depression, insomnia, impulse control disorder with no side
effects.
c. Dietary choices may slow progression.
Correct the microbiome by increasing dietary fiber (fruits, vegetables, whole grains, nuts), yogurt (active
culture), and fermented foods (sauerkraut, kimchee, sourdough bread, kombucha) but eating fewer saturated fats
and complex sugars. Data on probiotics as to their slowing PD progression are mixed.
*Microbiome: the community of micro-organisms living together in a particular habitat, such as the human body.
d. Insomnia: Maintain regular sleep hours. The suggestions below should help decrease insomnia so a person can get
6-9 hours of sleep a night.
Don’t exercise in the late afternoon or evening, do not take in caffeine or alcohol in the evening, reduce fluid intake
late in the day, avoid “screens” (television, computer, tablet, cell phone) late in the day unless they are low blue light
models, avoid “screens” in the bed room ( using the bed only for sleep or sex), limit napping
during the day to 15 minute “cat naps”, start relaxing 1-1 ½ hours before bedtime, keep the bedroom cool around 6
degrees, use a “light box” for 30-60 minutes once or twice a day to reduce daytime drowsiness and
help insomnia.
e. Constipation: Besides following dietary guidelines as noted in “c”above and taking in adequate hydration, the use of
the following could help.
A fiber supplement (start low and slowly increase); polyethylene glycol (eg. MiraLax) taken daily and adjusting the
dose; stimulants (eg. senna) use occasionally; glycerine suppository if having trouble initiating a bowel movement
(sphincter discoordination)
f. Urinary symptoms and suggestions:
Most common: urgency, frequency, incontinence , nocturia (waking from night time sleep once or more times to void)
caused by overactive muscles. Decrease fluids in the evening, avoid alcohol and caffeine in the evening, schedule
urination during the day (every 2-3 hours), do pelvic floor exercises (Kegel) and pelvic floor stimulation.
Less common: slow stream, incomplete voiding caused by underactive muscles. Have your prostate checked, see a
urologist.
g. Low blood pressure: Loss of normal diurnal (day time) fluctuation which should be lower in the AM and higher in
the PM. Increase fluid intake in the AM and early PM, sleep with head of bed elevated, pump legs and feet
before getting out of bed or chair, increase salt intake (unless advised not to because of other medical conditions),
avoid very hot baths or showers, wear compression stockings.
h. Cognitive impairment:
Make sure your hearing is OK and get hearing aids if necessary. Otherwise, simplify your daily activities, organize
those activities, write things down (calendar, journal), and delegate: asking others to help you.
Hospitalization
Having to enter hospital with Parkinson's Disease is an unexpected experience. However, open the site below for some guidance. Click on gold site below; then click on the name again after "go to file".
Mental Health Care for Patient and Care Giver Mental Health Care for PWP and Their Caregivers
presented by Rev. Dr. Richard McCaughey 6/26/2024
Mental health care begins not with professional help but with caring for ourselves and others in effective ways. The following is largely a prescription for how to do that.
SELF-AWARENESS:
EMOTIONS:
THINKING:
When did I learn this thought?
Is this a logical thought?
Is this thought true?
RELAXATION AND MEDITATION:
SPIRITUALITY:
HUMOR:
Decreased stress hormones Elicits the relaxation response
Increased blood flow Increases pain tolerance
Enhanced memory and learning Lessens the fear of death
Decreases depression, anger and perceived stress
We aren’t heard. We aren’t content.
We aren’t real.
PD AND MOOD:
pessimism, dysphoria (unwell/unhappy), sadness, suicidal thoughts
Psychotherapy (esp. cognitive behavioral therapy)
Brain stimulation
Exercise
Social support
1. Educate yourself about symptoms and how to manage them. Be alert to new symptoms (they might not be from PD). Look for a pattern: when you take your meds, when and what you eat, when and what you are doing. Write down what you notice (Journaling).
2. Seek treatment by a multidisciplinary health team (movement disorder specialists) if possible.
3. Educate yourself about drug effects, side effects and interactions (www.drugs.com).
4. Improve symptoms without drugs
a. Physical activities such as those below have been shown to slow the progression of PD.
Activities that raise heart rate (cardio), strength training, physical therapy, treadmill training (intervals), stationary
bicycling (intervals), dance, yoga, massage therapy, boxing such as Rock Steady Boxing, Tai Chi for balance, rowing,
walking with walking poles, speech therapy such as LVST-big, or Speak Out helps swallowing and
prevents aspiration, possibly acupuncture (although it has had mixed reviews regarding its usefulness)
b. Psychosocial activities:
Enjoyable group activities, family support, support groups, relaxation therapy, mindfulness, social connections,
music therapy. Cognitive Behavioral Therapy performed by psychologist, psychiatric social worker, or psychiatrist
in person or on-line is very effective for anxiety, depression, insomnia, impulse control disorder with no side
effects.
c. Dietary choices may slow progression.
Correct the microbiome by increasing dietary fiber (fruits, vegetables, whole grains, nuts), yogurt (active
culture), and fermented foods (sauerkraut, kimchee, sourdough bread, kombucha) but eating fewer saturated fats
and complex sugars. Data on probiotics as to their slowing PD progression are mixed.
*Microbiome: the community of micro-organisms living together in a particular habitat, such as the human body.
d. Insomnia: Maintain regular sleep hours. The suggestions below should help decrease insomnia so a person can get
6-9 hours of sleep a night.
Don’t exercise in the late afternoon or evening, do not take in caffeine or alcohol in the evening, reduce fluid intake
late in the day, avoid “screens” (television, computer, tablet, cell phone) late in the day unless they are low blue light
models, avoid “screens” in the bed room ( using the bed only for sleep or sex), limit napping
during the day to 15 minute “cat naps”, start relaxing 1-1 ½ hours before bedtime, keep the bedroom cool around 6
degrees, use a “light box” for 30-60 minutes once or twice a day to reduce daytime drowsiness and
help insomnia.
e. Constipation: Besides following dietary guidelines as noted in “c”above and taking in adequate hydration, the use of
the following could help.
A fiber supplement (start low and slowly increase); polyethylene glycol (eg. MiraLax) taken daily and adjusting the
dose; stimulants (eg. senna) use occasionally; glycerine suppository if having trouble initiating a bowel movement
(sphincter discoordination)
f. Urinary symptoms and suggestions:
Most common: urgency, frequency, incontinence , nocturia (waking from night time sleep once or more times to void)
caused by overactive muscles. Decrease fluids in the evening, avoid alcohol and caffeine in the evening, schedule
urination during the day (every 2-3 hours), do pelvic floor exercises (Kegel) and pelvic floor stimulation.
Less common: slow stream, incomplete voiding caused by underactive muscles. Have your prostate checked, see a
urologist.
g. Low blood pressure: Loss of normal diurnal (day time) fluctuation which should be lower in the AM and higher in
the PM. Increase fluid intake in the AM and early PM, sleep with head of bed elevated, pump legs and feet
before getting out of bed or chair, increase salt intake (unless advised not to because of other medical conditions),
avoid very hot baths or showers, wear compression stockings.
h. Cognitive impairment:
Make sure your hearing is OK and get hearing aids if necessary. Otherwise, simplify your daily activities, organize
those activities, write things down (calendar, journal), and delegate: asking others to help you.
Hospitalization
Having to enter hospital with Parkinson's Disease is an unexpected experience. However, open the site below for some guidance. Click on gold site below; then click on the name again after "go to file".
Mental Health Care for Patient and Care Giver Mental Health Care for PWP and Their Caregivers
presented by Rev. Dr. Richard McCaughey 6/26/2024
Mental health care begins not with professional help but with caring for ourselves and others in effective ways. The following is largely a prescription for how to do that.
SELF-AWARENESS:
- You can’t effectively treat an illness or disease without a diagnosis.
- Self-awareness is an open, honest, non-judgmental and self-compassionate understanding of what is going on with you (mentally, emotionally and spiritually), when it is going on and why.
- Self- awareness requires self-acceptance, that is, an acceptance of who you are at the moment regardless of all the goals you may have for improvement of yourself. There is little room for ego driven needs in this process.
- Seeing as how we are dumbest about ourselves, it is advisable to invite input about yourself from people you know care about you, whom you can trust, and whose judgement you respect.
EMOTIONS:
- You are like an iceberg. The tip above the surface represents your rational consciousness. The great mass below the surface represents your emotional sub-consciousness.
- The sub-conscious mind largely uses emotions to communicate with the conscious mind.
- The way to “listen” to your emotions is to feel them until you have conscious awareness of their meaning and origins. Once awareness comes, the emotions themselves often subside or disappear because they have succeeded in communicating.
- People are often afraid of their emotions because they are afraid of losing control, or afraid of their emotions undoing them somehow and causing harm. Your emotions do not try to harm you; they try to get a message through.
- You have no conscious control of your emotions. You can freely feel your emotions if you are confident of controlling your actions and staying in charge of your thinking.
- Emotions are neither right or wrong, good nor bad. They are value neutral messengers from the sub-conscious to the conscious mind.
- Two primary difficult emotions: pain and fear. Anger and depression are means of coping with these emotions: anger to act on pain or fear, depression to mute pain or fear.
- Worry is fearful thinking about an imagined negative experience in the future. Worry does not help; you practice it to give yourself the illusion of control over the future. The antidote to worry is confidence and trust.
THINKING:
- Much of our stress and emotional suffering come from the way we think. The thoughts that cause us stress are usually negative, unrealistic and distorted.
- “Your worst enemy cannot harm you as much as your own unguarded thoughts.” (Buddha)
- You can choose to think whatever you want. You can exercise control over your thinking.
- The problem is habitual, automatic thinking that we exercise without critical judgment.
- Questions to ask yourself to challenge automatic thinking:
When did I learn this thought?
Is this a logical thought?
Is this thought true?
RELAXATION AND MEDITATION:
- Even when you cannot control the situation, you can control your breathing. The breath is the bridge between the body and the mind, the conscious and the sub-consciousness mind, the sympathetic and the para-sympathetic nervous systems.
- Meditation is any activity that keeps your attention focused in the present.
- Relaxation formula: Stop—Breathe—Reflect—Choose
SPIRITUALITY:
- There are two needs that are hard wired into each human being that are just as vital to our thriving and surviving as air and nutrition: meaning/purpose and belonging/connection. This is what spirituality is all about.
- We build our lives from the time of birth in ways that will meet these two needs.
- Because life moves and changes, we regularly have to tweak our spiritual construction.
- From time to time the whole construction of meaning/purpose and belonging/connection is so badly shaken that we experience spiritual crisis.
- The experience(s) of spiritual crisis is dark, scary, messy and lonely.. Herein we embark on a wilderness journey between “no longer and not yet”.
- Hopefully this journey leads us eventually to transformation.
- Medical crisis often leads to spiritual crisis because our world has been severely altered.
- Presence (listening, caring, empathy – not fixing) is the greatest way to help.
HUMOR:
- Children laugh up to 300 times a day; Adults laugh only 15-17 times a day. What happened to us?
- Benefits of humor
Decreased stress hormones Elicits the relaxation response
Increased blood flow Increases pain tolerance
Enhanced memory and learning Lessens the fear of death
Decreases depression, anger and perceived stress
- Why we don’t laugh (Marilyn Meberg)
We aren’t heard. We aren’t content.
We aren’t real.
PD AND MOOD:
- Chronic mood disorders related to a progressive reduction of dopamine:
pessimism, dysphoria (unwell/unhappy), sadness, suicidal thoughts
- Therapies:
Psychotherapy (esp. cognitive behavioral therapy)
Brain stimulation
Exercise
Social support