Category Archives: Parkinson’s

Non-medication approach to depression – webinar notes

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The Parkinson’s Foundation (parkinson.org) hosted an hour-long webinar in late November 2017 about non-medication treatment of depression in Parkinson’s Disease (PD). Actually, very little of the material presented was specific to PD but rather applies to anyone coping with depression. Our mood (degree of positive and negative thoughts) affects our quality of life, anxiety level, and motor function.

Find a link to the archived webinar recording here as well as a link to the slides: (you must register to view the recording)

parkinson.org/Living-with-Parkinsons/Resources-and-Support/PD-ExpertBriefings-Webinars/Archives

The excellent speaker was Roseanne Dobkin, PhD, a clinical psychologist at Robert Wood Johnson Medical School. She offered good advice for:

* changing negative thought patterns toward more realistic thinking

* setting incremental goals to overcome apathy and depression

* addressing another person’s negative or pessimistic comments

As always, Denise’s detailed notes are below. They are well worth reading.

Robin
———————–

Notes by Denise Dagan, Brain Support Network volunteer

Parkinson’s Foundation Expert Briefing
Depression and PD: Treatment Options
Speaker: Roseanne D. Dobkin, Ph.D.
November 21, 2017

Solutions to Parkinson’s complaints are not something you can just call in. You need to take action to improve the situation for both motor and non-motor symptoms. Knowing the solutions and not implementing them will not help you.

Cognitive-Behavioral Therapy (CBT)
– Evidence-based psychotherapy
– Targets thoughts and behaviors
– Skills-based
– Very suitable for enhancing effective coping and treating depression in PD

CBT: Key Points of Emphasis
Multiple interacting causal factors of depression.
– Biological (brain chemistry, nutrition/diet, exercise/fitness)
– Cognitive
– Behavioral
Intervening on any one of these factors will improve depression, but improving on all of them will have the most beneficial effect.

Examples of 1:1 Interventions

* Increasing meaningful and social activities. Not just busy work, but something you really want to do, especially goal-oriented.
– Old: think what you used to love to do
– New: consider activities you didn’t participate in before PD
– Modified: accept you will need to do things differently than you used to, but you can still participate/contribute.

* Exercise every day
* Social goal – every day
* Self-soothing every day – what is relaxing and comforting to you? Hot tub, nature stroll, fire pit and wine.
– Taking action toward your goals doesn’t have to be huge daily. Start with baby steps and add more effort and time toward each goal up to your time and energy limits.

* Problem solving for physical limitations:
– Pacing of activities so you don’t overdo it
– Appropriate daily goals/less rigid demands
– Plan around “off time”
– Walk 10 minutes 3 x daily, instead of 30 minutes at a time
– Follow through with referrals for PT, OT and Speech

Roseanne told a story of a former fire fighter with PD whom she worked with to find ways in which he could still stay involved with his fire company. He began by joining them for a few social get-togethers, then began volunteering for charity works the fire company was involved in until he began spearheading some charity drives.

* Anxiety management and relaxation – Google these topics or find books at your local library
– Breathing exercises
– Progressive muscle relaxation
– Guided visualization (taking your mind to a place of calm actually brings down blood pressure & anxiety)
– Worry control

* Sleep hygiene
– Using bed for sleep only
– Relaxing before bedtime (limit blue light screen time in the hour, or longer, before sleep)
– Keeping regular sleep hours
– Limiting excess time in bed, daytime naps, caffeine, or alcohol in the evening
– If you aren’t falling asleep, get out of bed until you do feel sleepy so you don’t associate the bed with NOT sleeping, which can lead to insomnia.

* Thought monitoring and restructuring – Rethink the big picture. Use these techniques to rethink how you are feeling and responding to various situations. Stop the negative thought process, rewind what you thought, felt and did and project what you might do differently next time.
– Catch the negative thought
– Press pause
– Rewind
– Replay

* Multiple methods/techniques – to catch yourself and reframe your thinking from negative/unrealistic toward positive/realistic.

Thought Chart Examples: Keep track of the situation, your emotional response, and your thoughts.

Situation: Doing volunteer work
Emotion: Hopeless
Thoughts: I’m not capable of contributing. My life is meaningless.

Situation: Find out you are not invited to something
Emotion: Depressed
Thoughts: My PD makes friends uncomfortable.

Situation: Thinking about going to a party
Emotion: Anxious and scared
Thoughts: It will be horrible if people see my tremor

Are your thoughts balanced? Not rosy and positive, but realistic. Everything is not gloom and doom, either. There is usually a bit of both + and – in every situation. What would a jury of your peers decide? Is your perspective the only way to think about the situation? Are your thoughts fact based, in perspective rather than skewed?

Examine the “Evidence” for your thinking, in this case: I’m helpless. Was this person really helpless? No.
– Situation: Freezing in the bathroom.
– Automatic Thought: I’m helpless
– Evidence For: I was alone in the bathroom in the middle of the night and unable to move.
– Evidence Against: This happens quite a bit, so I planned in advance. I had my cell phone in my pocket. I called my wife on the house phone and she helped me back to bed.
– Rationale Response: Even though I was physically unable to move my feet, I was able to help myself out of the situation (thus I am not helpless).

Behavioral Experiment – because we often anticipate the worst before we have actually tried, so do a behavioral experiment, like this one:
– Negative Thought or Prediction:
“It will be impossible to have dinner in a restaurant because of my tremor.”
– Experiment:
I will to to the Olive Garden with my spouse on Saturday at 6pm.
– Outcome:
I was able to eat dinner at the Olive Garden. I ordered food that did not need to be cut and requested a straw and lid for my coke. I enjoyed getting out of the house. There were no leftovers to bring home.

You have control over your thinking and actions in response to your PD symptoms and circumstances: If you are thinking, “I am not accomplishing anything anymore.” Revise your thinking to, “I am still accomplishing many things for my family and community, even though I am no longer working in my business.”

If you are thinking, “I am rapidly deteriorating.” Revise your thinking to, “The neurologist said I was the same as 6 months ago and did not change my medications.”

If you are thinking, “Nobody at the party will talk to us.” Revise your thinking to, “At least some people will talk to us. It is highly unlikely that we will be completely ignored.”

CBT Outcome Data in PD studies:
* Dr. Dobkin’s first randomized control trial of CBT for people diagnosed with PD
– 80 people with PD (PWP) and caregivers were enrolled in the trial
– Intervention: CBT + clinical monitoring (neurologist) + standard care
– Control: Clinical monitoring (neurologist) + standard care

* 10 sessions of one-on-one CBT for the PD patient

* 4 supplemental caregiver educational sessions

* After the 10-week treatment period, there was a follow up 1-month later, which found those with CBT had significantly lessened feelings of depression for both the person with PD and their caregiver. Continuing this type of therapy over the phone can continue the effects of the initial treatment.

* Secondary outcomes improved, as well !
– Anxiety lessened
– Coping skills improved
– Quality of life improved
– Motor function improved (motor function follows mood: poor mood, poor motor function & vice versa)
– Negative thoughts lessened

Conclusions:
* Your mood is one critical aspect of living with PD that you can control.
* Don’t suffer in silence!
* Effective non-pharmacological treatments are available that can be used alone or in conjunction with standard pharmaceutical treatments.

QUESTION AND ANSWER

Q. Are medications helpful for depression in PD.
A. Absolutely, if someone’s depression is milder Dr. Dobkin recommends starting with CBT therapy. When symptoms are moderate to severe she recommends medication in combination with CBT therapy.

Q. How to people come to a psychiatrist, like Dr. Dobkin?
A. 30% of the time the patient is self-referred, they ask around to get a recommendation. 30% of the time they are referred to psychiatry from their neurologist. 30% of the time they are referred to psychiatry by a friend/family member or primary care physician.

Q. If you have apathy, how do you get motivated to get treatment?
A. Depression is feeling sad or low, and apathy is more of a lack of feeling. There is overlap because one symptom depression is lack of motivation. If you are feeling unmotivated, set yourself a very small, specific goal based on what is important to you or someone in your family. If you are not exercising, get a goal to walk for just a few minutes. Success in reaching your goal may motivate you to set your goal to walk a few minutes longer next week.

Q. If someone is biologically inclined toward depression aren’t they doomed to experience depression?
A. The biology component of the factors which contribute to depression is only one factor. It doesn’t matter how much biology is contributing to depression because the cognitive and behavior factors are also at play. Intervening in either or both the cognitive and behavior factors toward the positive make a significant positive impact on reducing feelings of depression.

Q. Is there any research data on the use of narrative therapy in PD?
A. Not that Dr. Dobkin knows of, but there is a place for all sorts of evidence-based non-pharmacological treatments that have been successful in other disorders and it will probably have some degree of success in Parkinson’s, as well.

Q. Is the Hamilton Depression Scale more for use by a clinician or by patients and their families?
A. It would be difficult to self administer, but there are dozens of tools that would be more user friendly for self evaluation. Most scales are best used in conversation with a health care professional. There are some good self help books that use cognitive behavior therapy as their basis for helping the reader. These books have some quizzes and self evaluations along with the self guided CBT based advice.

Q. Over the holidays what advice would you give families for helping someone who’s blue?
A. Let your distressed loved one know you are willing to listen if they want to talk. Try to engage them in planned family activities. People who are depressed tend to both think and speak in depressed language. Talk back to negative statements in positive ways to help them balance their thinking toward a more realistic perspective.

“Optimizing Personal Health Strategies to Manage Parkinson’s” – Webinar Notes

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“Optimizing Personal Health Strategies to Manage Parkinson’s” – Webinar Notes

Partners in Parkinson’s (partnersinparkinsons.org) is a partnership between the Michael J. Fox Foundation and AbbVie Pharmaceuticals. In early October, they held a webinar on optimizing personal health strategies to manage Parkinson’s Disease (PD), using goal setting. Though the webinar was supposed to be focused on “care beyond the clinic,” the first part of the webinar actually focused on communicating with your physician.

Most of the webinar applies to those with disorders other than PD. I thought the best part of the webinar was the section on mental health. To address mental health, those with a neurological disorder should:

* Monitor non-motor symptoms, such as depression, anxiety, apathy, sleep problems, and cognitive issues

* Consider speaking with a mental health professional and/or joining a support group

* Supplement medication with other strategies to manage mental health – exercise, meditation, massage, and counseling

You can find a link to the webinar here:

https://partnersinparkinsons.org/attend-a-webinar

Note that registration is required but there’s no fee to view the webinar.

Volunteer extraordinaire Denise Dagan listened to the webinar and took notes. They are shared below.

Robin

—————————————

Notes by Denise Dagan, Brain Support Network Volunteer

Care Beyond the Clinic: Optimizing Personal Health Strategies to Manage Parkinson’s
Partners In Parkinson’s
October 4, 2017 Webinar

Moderator:
* Dr. Soania Mathur, MJFF Patient Council Co-Chair and person with Parkinson’s

Speakers:
* Dr. Irene Richard, a movement disorder specialist
* Chad Moir, Founder of Dopafit: Parkinson’s Movement Center in Easthampton, MA
* Dan Kinel, a person with Parkinson’s

QUALITY OF LIFE

Maintaining Quality of Life (QoL) with PD
* Set goals to help maintain quality of life.
— What matters most to you?
— Adjust goals as needed.
* Control the variables that you can.
* Find balance between physical, mental and social health (they all affect each other).

Speakers define quality of life as doing what you want to do, when you want to do them. Parkinson’s often reduces QoL in some ways, particularly physically, but also enhances QoL in personal/emotional ways.

For Dan Kinel, focusing on maintaining QoL has improved his fitness, as he now focuses on exercise to best maintain his movement. He regularly shares with his doctor his current symptom condition as well as his diet and exercise routines, so his Dr. can address those symptoms Dan cannot control, like tremor.

Dr. Richard says Dan’s communication with his doctor in this way is perfect! Even if you only have a nurse practitioner with a lot of PD experience, getting feedback as to what may help maintain QoL is better than nothing until you can see your neurologist. You do need to strike a balance between living your life and spending more time than you would like on exercise and monitoring diet.

Chad always asks new members to Dopafit what their goals are in adding movement/exercise to their routine. In this way, Dopafit can support those goals in the most efficient and fun way. You won’t regularly do an activity you don’t enjoy. Try dancing if you don’t like Rock Steady Boxing.

Dr. Richard says people become frustrated when their body will no longer do things they used to. It helps to reset your expectations so you can continue to do some of the things you loved if you accept that you may be able to do those same things more slowly, or keep an open mind to explore things you have not done before, but that you may really enjoy now. Exercise – the earlier, the better – may benefit neuro-protective and restorative benefits, and even benefit mood, sleep, and thinking. Tai-Chi has been researched, particularly, but also mental exercises are of benefit in the same ways.

PHYSICAL HEALTH

Physical Health and Parkinson’s
* Be consistent with medication and other routines to help manage symptoms
* Build a management team of experts you trust
— Contact an AbbVie advocate to locate resources in your area at www.pdadvocates.co
— Allied care professionals
— Complementary medicine
* Exercise is KEY to optimizing overall health

Dan moves his body in some way every day to maintain mobility and flexibility. He also socializes with friends or community every day. He says, just do something you feel engaged in.

Dr. Mathur asked Chad how he helps members of Dopafit to overcome apathy. He encourages members to think about which activity they have tried that they, “don’t like the least,” and commit to doing that.

Dan says having a commitment to do an activity with friends, who are expecting him, helps him overcome apathy, laziness, loss of interest, and get out the door to move and/or be social.

Dr. Richard suggests that engaging with other people also helps with projecting your voice or being aware of your own facial masking as PD symptoms progress. If you let it, that feedback may help keep you from withdrawing so you continue to be engaged with people and active, which are both part of maintaining QoL. Setting a schedule with a spouse, friends, or a place like Dopafit to get out and socialize or exercise goes a long way toward this.

Chad says Dopafit is doing more than just old-fashioned workouts. They offer Rock Steady Boxing, giant Jenga for fine motor skills – and fun!, tango and other dance, Tai-Chi, the Art Cart for fine motor skills, and more. Having all these various activities available adds a tremendous social element to participating. It all plays in to QoL and the whole person, rather than just muscle strength.

Dan has done a tremendous variety of PT, OT, speech therapy, acupuncture, massage, social engagement and several exercises to slow the progression of his disease and maintain his QoL. He says to remember that others are going about their day and not paying attention to you, even though you may feel that everyone is staring at your gait, facial mask, etc.

Dr. Richard says all the things Dan has been doing is complementary to properly balanced medications, so you have to pay close attention to getting both in order to be able to do all activities throughout the day, safely.

MENTAL HEALTH

Mental Health and Parkinson’s
* Monitor non-motor symptoms
* Consider speaking with a mental health professional and/or joining a support group
* Supplement medication with other strategies to manage mental health
— Exercise
— Meditation
— Massage
— Counseling

Dr. Richard says it is very common to have depression, apathy, mood, sleep, concentration problems with PD, but your doctor can help with all of these with medication options in concert with exercise, meditation, counseling and other tools. Doctors don’t always ask about your mood or emotional state in your neurological appointments. She says, please, please, please don’t feel it is not a personal deficit, but one way in which your PD is manifesting itself so bring those changes up to your neurologist to get help.

Dan mentioned several members of his care team, but forgot to mention his therapist who really helped him to get through the depression that overtook him when he first got his PD diagnosis. It was a combination of medications, talk therapy, support group, etc. If he finds himself feeling that way again, he will reconnect with that therapist.

Dr. Richard reminds us that doctors believe depression that is treated before motor symptoms are noticed, is probably the first presenting symptom of PD because they now recognize depression can be a symptom of PD.

Dan says your doctor can’t read your mind, so you need to tell them how you have been feeling, regardless of the cause. If it is decreasing your QoL it is worth bringing up to discuss how to overcome those low feelings so you can feel more motivated to do the exercise, socialization, etc. that maintain QoL in other ways.

Dr. Richard wants everyone to remember to use the valuable services of PT, OT, speech therapists as part of your care team.

SUMMARY

Summary
Accomplishing goals and optimizing personal care
* Living well is about creating a plan and making changes as needed to address your overall health
* Set goals that address all aspects of your care, including physical, mental and social health.
— Speak openly with your doctor and other members of your care team about how they can help you reach your goals.

QUESTION & ANSWER

Dr. Richard says most people have multiple medical conditions as they age so if you have chronic low back pain you may not be able to participate in some of the popular exercise programs for PD, but you can seek physical therapy advice to find exercises that will not only keep you moving, but help the lower bcd pain. Communication between your neurologist and PT is crucial.

You can even start with your primary care physician (PCP) about those other medical conditions outside your PD. They may refer you to a neurologist, movement disorder specialist, or PT. Be sure all your team is communicating with each other.

Dr. Mathur brought up how does dementia play into PD care? Dr. Richard says you can get all levels of cognitive dysfunction in PD, especially as people get into really advanced years. It can just be executive function issues, which is easier to adapt to. But, in some cases people will develop dementia, which is defined as cognitive impairment that affects your ability to accomplish the activities of daily living without assistance. If you think you have cognitive impairment, you should have an evaluation. You can get recommendations for improving independence. You can find our you have delusions and learn how to manage living with this more confusing and debilitating condition.

Dr. Mathur asked Chad about his mother, who had PD which was undiagnosed for many years. Chad said she had cognitive impairment and as a care partner he found the best thing he could do with respect to activity is to meet her where she was because her ability to remember from one day to the next, have the motivation to cooperate with exercise, etc. was very fluid.

Dr. Mathur asked Dr. Richard if there is a minimum amount of exercise daily and how does medication play into that?
There are a lot of studies into what kind of exercise is best, what they achieve, how often to do it, and for how long. She says there is not definitive answer to any of it. She recommends doing something every day, get your heart rate up, but there is no specific prescription. Don’t overdo it so you are in pain or debilitated afterward. Don’t let it take over your life unless you truly enjoy spending that much time exercising. Stay really well hydrated!!!

Dan exercises right after taking medication so he can move most smoothly. He works out every day and is cognizant not to overdo it. He gets his heart rate up and tries to engage his mind while exercising. He really enjoys non-contact boxing. He really doesn’t want to overdo it so he doesn’t suffer an injury and have a tremendous set-back while he recovers from an injury.

Dr. Mathur asks if the massage therapist and other allied professionals should be certified? Dr. Richard says PT, OT and speech therapists should definitely be specially trained in PD. There are those who are specially trained in neurological conditions, but that is often focused on stroke. You would do better with someone who has been trained or is willing to educate themselves about PD specifically.

Dr. Mathur asked everyone what is the most important thing you could tell someone with PD to optimize their QoL.
– Dan would say you are still the same person the day after the diagnosis. Don’t obsessively look at the internet, exercise and reach out for support from whomever is willing to help walk you through this.
– Chad says be proactive. First thing, find a movement disorder specialist you feel comfortable with so you can really communicate with them about depression, etc. Then, build your team (PT, OT, speech therapist, etc.) and get involved in the PD community (support group, fundraising – whatever is for you). Exercise!
– Dr. Richard says keep an open mind because you will continue to learn, symptoms will change, get your information from reliable sources and once you have all the information discuss it with your Dr. and decide what treatments, medication, exercise, social involvement, etc. work for you over time.

Recording, Resources + Notes from Orthostatic Hypotension in PD, MSA, and LBD Webinar

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Recording, Resources + Notes from Orthostatic Hypotension in PD, MSA, and LBD Webinar

Brain Support Network and Stanford University co-hosted a webinar last Monday, September 18th about orthostatic hypotension (OH) in Parkinson’s Disease (PD), Multiple System Atrophy (MSA), and Lewy Body Dementia (LBD).

 

 

RECORDING

We’ve posted the webinar recording here

 

SURVEY

If you listen to the webinar recording, please take LESS THAN FIVE MINUTES to answer six questions on our survey here.

 

RESOURCES

For additional information on the topics addressed during the webinar, see:

Orthostatic hypotension

Parkinson’s

Make an appointment with Dr. Santini at the Stanford Movement Disorders Center – 650-723-6469

Multiple System Atrophy

Lewy Body Dementia

 

 

NOTES

Our terrific volunteer, Denise Dagan, took notes from the webinar.

Webinar
Orthostatic Hypotension (OH) in Parkinson’s, Multiple System Atrophy, and Lewy Body Dementia

Speaker:  Veronica Santini, MD, movement disorders specialist, Stanford University
Host: Candy Welch, former MSA caregiver, Brain Support Network
September 18, 2017

 

SANTINI’S PRESENTATION

Topics for this webinar are:
* Describe symptoms associated with orthostatic hypotension (OH) in
– Parkinson’s Disease (PD)
– Multiple System Atrophy (MSA)
– Lewy Body Dementia (LBD)
* List the conservative and medication interventions used for treatment

Normal Blood Pressure Response to Gravitational Change
Gravitational Change = changing from lying or sitting to standing, even climbing stairs.  Gravity pulls blood into the legs and belly (up to 1 liter, or more).  That means less blood goes to the heart, resulting in up to 20% less blood leaving the heart and consequent blood pressure decrease.  Normally sensors in the neck see less blood pressure and sends signals to close blood vessels, increasing blood pressure.  Important organs get nutrients and oxygen.

In OH the sensors are not working properly (baroreceptor reflex is dysfunctional), so blood vessels don’t close.  They stay open and blood pressure drops, causing symptoms.

Common symptoms include:  lightheadedness, dizziness, almost passing out, weakness, fatigue, visual blurring, headaches.

Less common are:  buckling legs, walking difficulties, confusion, slowed thinking, shortness of breath, imbalance, jerking movements, neck pain/“coat hanger headache”, chest pain

Rare symptoms include:  stroke-like symptoms, weakness or numbness, abnormal cramping/dystonia.

Evaluation of OH includes:
– History of autonomic symptoms
– “Orthostatic” blood pressure (BP) = measure BP in both laying and standing postures.  OH is defined as a drop of the systolic >20 or diastolic >10
– Neurological examination
– Autonomic testing can be helpful in distinguishing PD/DLB from MSA

Approach to Treatment of OH:
Conservative therapy first, then adding Medications and, if necessary, Combination therapies (both conservative and medications, even a combination of medications)

Goals of Treatment:
1. Prevent loss of consciousness (this leads to falls and potential injury)
2. Prevent close calls (almost losing consciousness and)
3. Identify and prevent symptoms of OH (leg weakness, falls, somnolence, confusion)
4. Improve fatigue, exercise tollerance and cognition

Actions to Avoid:
– Standing motionless
– Standing too quickly
– Working with arms above shoulders
– Hot environments (anything that leads to sweating)
– High altitude
– Hot baths
– Fever
– Dehydration !!!
– Vigorous exercise
– Fast or heavy breathing
– Large meals
– Alcohol
– Straining with urination or defecation
– Coughing spells

Conservative Management:
– Water ingestion (60oz/day!)
– Salt tabs, dietary salt (chips, pretzels, nuts, deli meats, soups, tomato juice)
– Head of bed elevation 10-20 degrees/4” or 10cm (reduces postural change extremes, and urination)
– Physical maneuvers that raise orthostatic blood pressure (standing calf exertion, raise one leg on a step, knee bends, single knee kneel)
– Cooling vests, leg sleeves, binders around the abdomen after eating to prevent blood rushing to gut for digestion

Medications:
Fludrocortisone (Florinef)
Mineralocorticoid, a-1 agonist = woirks by expanding blood vessel volumes
Dose 0.1-0.5mg/daily
Should be used carefully due to rise of volume overload, electrolyte abnormalities
Additional side effects: headache, swelling, weight gain, high blood pressure lying flat.

Midrodrine
Peripheral z1 agonist = Works by squeezing blood vessels
Dose 5-10mg 3x daily
Common side effects: pupil dilation, goose flesh, tingling, itching
Can also cause high blood pressures when lying flat.

Droxidopa (Northera) (Newest FDA-approved Rx)
Norepinephrine (NE) pro-drug but the exact mechanism of action is unknown.
Studies have shown low standing NE
Dose 100-600mg 3x daily
Common side effects: headaches, dizziness, nausea, blurry vision, high blood pressure
Can also cause high blood pressures when lying flat.

Doctors advise against lying down when using all of these so you don’t raise blood pressure too high. Never take them before bedtime so blood pressure doesn’t go to high while sleeping.

Non FDA-approved Pharmacology:
Pyridostigmine (Mestinon)
Improves standing BP in patients w/OH
Does not increase BP when lying down
Effective alone or w/Midrodrine
Side effects: diarrhea, salivation, nausea, vomiting, muscle cramps, twitching\

Yohimbine
a-2 adrenorectptor antagonist = increases norepinephrine and BP
Side effects: confusion, increase in heart rate, headache, or tremor
Medication interactions
Regulation of supplements

 

QUESTIONS AND ANSWERS  (all answers are by Dr. Santini, unless indicated)

Q:  What can caregivers do to help?

A:  Be the squeaky wheel by reminding your family member to keep hydrated, eat salty foods (even it that means the two of you eat different meals), help them check blood pressure throughout the day.  Also, give your doctor a symptom report so he/she has a full picture of challenges at home.  Doctors can’t fix what they don’t know about.  Sometimes patients get used to having low BP, so they don’t report changes to their doctor.  Caregivers can be more objective in how things used to be before BP issues arose, like seeing increased falls, more sleepiness, etc.  Caregivers need the right amount of support, as well.  Sometimes, the doctor can arrange for a nursing assistant to come into the home to do BP checks, or provide other services.  Just let your neurologist know if you are feeling the least bit overwhelmed.

Q:  How do you keep someone safe with OH without confining them to a wheelchair?

A:  Doctors should make sure the patient’s BP is good enough to have a full and active life.  It is a step-wise process, so be patient, but patients and their families or caregivers should be persistent.  Make sure all aspects of the patient’s health influencing BP is investigated, the big picture is formed and all therapies possible are attempted.

Candy:  We had a tilting wheelchair for my husband, who had MSA, so when he was feeling faint they could tilt the chair back making it easier for the body to maintain blood pressure, and preventing him from feeling awful or passing out.

Dr. Santini:  Neurologists are often able to write a letter to your insurance company recommending such a chair so that it is covered by insurance.  They are very expensive, but insurance did pay for Candy’s husband’s tilting wheelchair.

Q:  How does blood pressure affect brain function?

A:  There are several philosophies, but it is thought the blood carrying oxygen and nutrients doesn’t get to certain parts of the brain when BP is low.  The most upper parts of the brain affect both thinking and leg function.  Lack of oxygen and nutrients to these parts of the brain can cause all the symptoms mentioned; visual blurring, headaches, neck pain, dizziness, etc.

Q:  Are there any new blood pressure (BP) treatments?

A:  Yes, the newest is Northera.  Anecdotal evidence shows it to be quite effective.  But, the old ones are tried and true and new ones can be significantly more expensive.

Q: How do BP medications interact with Parkinson’s medications?

A:   There are several issues here.  Parkinson’s disease and atypical parkinsonian syndromes, like Lewy Body Dementia and Multiple System Atrophy cause problems with orthostatic hypotension.  So, the disease itself causes OH problems.  Almost every medicine doctors have to treat parkinsonian syndromes also drop blood pressure, unfortunately.  Patients should understand they need not suffer.  Let your physician boost your BP with some meds, then get your PD symptoms under control with other meds.  It is more meds, but if it improves your quality of life because you can move better and you can think and not be dizzy, etc. it’s probably worth it.  I frequently see patients who are not taking enough carbidopa-levodopa because it lowers BP.  I boost the BP, then add enough carbidopa-levodopa to improve mobility.  It’s a trade-off, but I feel quality of life is the most important thing while the patient is well enough in other ways to be active without feeling dizzy.

Q:   Can beta blockers help?

A:   With beta blockers you have to be careful. Beta blockers are often used for tremor control. We use those that don’t affect BP too much. They can be helpful for people who have very elevated heart rates.  Usually, the best treatment is to use the BP boosting agents. Oftentimes, in the absence of Northera, which can sometimes cause an increased heart rate, if you treat BP, heart rate can come down.

Q: What foods and supplements are best for OH?  Anything to be avoided?

A: It’s more how often you’re eating and how much you’re eating.  The bigger the meal, the more your BP can drop afterward.  If you are susceptible to BP drops after meals, an abdominal binder can be helpful.  Put it on about 10 minutes before a meal and keep it on for an hour afterward.  I recommend several small meals throughout the day, rather than three big meals. As far as what meals are best, we know some people have more difficulty with digestion of gluten or lactose.  Try going gluten free first for a couple weeks to see if it makes a difference for you.  If not, return the gluten and try going lactose free for a couple weeks.  It’s a good test to see if you are one of those with these digestive issues.

Q: What do you do if you have both OH and hypertension?

A: This is by far the most challenging of the group.  You have to decide on goals of care. Most commonly, people have hypertension, or high blood pressure, when they are lying flat. In that case you should avoid that flat position during the day.  At night we sometimes give a short-acting high blood pressure medicine, something like captopril, clonodine, etc.  It is more challenging when people have wide swings in BP.  It is extremely common in MSA and advanced PD.  Even standing or sitting people will have very high blood pressures, with systolic in the 180s of 190s.  Others will have extremely low blood pressures standing, with systolic in the 70s of 80s and they are passing out.  One thing doctors will do is ask patients to take their BP before they take the BP boosting medicine.  Then, the doctor will advise against taking the BP boosting meds when BP is already high, but to take it later in the day.  Sometimes, a person will need to avoid everything causing high BP.  Sometimes not treating high BP is the best option, even though that would normally not be recommended.  You have to treat which is causing the most symptoms and affecting quality of life.

Q: Can salt tablets help?

A: Yes, if you don’t like eating salt.  Talk with your doctor.  Taking a 1 gram tablet of salt in a tablet works better for some people than having salty meals.

Q: Can OH cause shortness of breath?

A: Yes!  It’s a common symptom because the upper lungs aren’t seeing as much blood as they usually do when BP is normal.  Gravity is pulling the blood down and those upper lung fields feel like they’re not breathing so people feel short of breath.

Q: Why does BP drop with exercise?

A: Sometimes it will raise, sometimes it will drop.  You may notice basketball players wearing sleeves on their ankles and legs.  Those are compression sleeves to help adjust BP.  When we exercise, the blood vessels open up so all the blood flow can get to those muscles that are working so hard.  The problem is that in OH we don’t have those extra reflexes to boost the BP back up.  Sometimes vigorous exercise can drop BP in people who have OH.  Those leg and arm sleeves can be very helpful in that case.

Q: Can OH lead to sudden death?

A:   It is a more rare circumstance.  It can certainly lead to heard dysfunction, and that could lead to sudden death.  We know that in autonomic dysfunction people can also have arrhythmias, and that can lead to sudden death.  If not exactly OH, sometimes it’s the autonomic failure that involves the heart that can lead to sudden death.

Q: Is OH more severe in MSA than in PD or LBD?  Is treatment of OH different with these three diseases?

A: Treatment tends to be similar but you have to be ready as the patient, caregiver, and healthcare provider to accept more OH in MSA. OH is typically more severe in MSA than in PD or LBD.  Sometimes very advanced PD or LBD (10+ years) may have severe BP swings, but MSA is more severe because OH occurs early in the disease course.  BP swings/OH is one of the most prominent symptoms people have in the entire MSA disease course.  Treatment goals in MSA may be different from PD and LBD as more accepting of BP swings.

These questions were sent in during the webinar:

Q: Someone has MSA w/OH but also supine hypotension (low blood pressure lying down).

A: This is easiest to treat because you just need to boost BP in all positions (lying down, sitting, and standing).  I would be concerned something else is going on and would recommend autonomic testing to determine that.

Q: Someone has primary autonomic failure (PAF) with possible MSA.  Does OH occur in PAF?

A: Oh, yes!  This whole category of PAF is a difficult one.  There is a current study looking at the natural history of primary autonomic failure.  Based on that research they are finding some of these patients eventually meet qualifications for an PD or MSA diagnosis.  Some people just have PAF, but not significant PD symptoms or progressive parkinsonism.  The main symptoms these patients have is OH and they really suffer from that.

Candy: This is how my husband was diagnosed with MSA.  First, doctors diagnosed PAF.

Q: Northera doesn’t help.  Should I stop and restart it?

A: No.  Sounds like you need to adjust the dosage.  Tell your doctor.  Sometimes, you just need to call or email, rather than make an appointment to see the doctor, for a medication adjustment.  Sometimes, they may ask you to come in in order to understand the problem.  If I had a patient report this to me and the patient was at the max dosage of 600mg/daily, I would cover all the bases with the patient.  I would reassess everything, confirming that the patient is drinking enough water, eating enough salt, wearing compression stockings. Does this patient tolerate Florinef and, if so, can we retry it?   Are you on an effective dose of Florinef or Midodrine, would adding pyridostigmine help the situation? When things get really tough, I sometimes temporarily reduces the anti-Parkinson’s medications (carbidopa-levodopa or dopamine agonist).  Sometimes reducing the PD meds isn’t what’s necessary, but increasing carbidopa can reduce side effects of levodopa, sometimes.  It’s worth looking at.

Q: Can coconut oil help OH?

A: Harmful? probably not, unless you have high cholesterol.  Ask your doctor if you should or should not be eating coconut oil, based on your health numbers.  There is no evidence that it helps.  It’s just the new magic for everything.

Q: Questioner feels faint while having a bowel movement. What can be done?

A: Either urinating or defecating activates the opposite side of the autonomic nervous system, lowering blood pressure.  People have passed out on the toilet.  Bathrooms are dangerous with hard surfaces to hit your head on when passing out.  The answer is to treat the constipation so there is no straining.  Don’t treat to the point of diarrhea because there can be straining with that, as well. Any of these may help:  Miralax, Senna, Cholase, or any stool softener. Another solution may be to put your feet onto a stool so knees are raised while on the toilet (Squatty Potty) can help defecation without straining.  Massage the lower belly while trying to poop can help move your bowel.  Best to poop after a hot meal and around the same time every day.

Q: What about SSRIs (antidepressants) for OH?

A: Yes, Prozac has been studied for use in OH. There is some research that it can help boost BP.

Q: Is Parkinson’s with OH more severe than PD without or a more rapidly progressing form of PD?

A:   Everybody who has PD has a different form of the disease. I have heard the strangest symptoms that a neurologist would consider ‘off medication’ symptoms, or those not normally attributed to PD, but happen to be attributed to that person with PD.  It’s very common for people with PD to have OH.  They are just a little unlucky because with OH you get a lot of symptoms.  Although you feel horrible and like you’re dying, sometimes, it doesn’t mean that your PD is more severe, just because you have those symptoms.  It means it’s something we need to treat and get your quality of life better.

Q: It seems OH research is focused on MSA. Do you feel that is true, and if so, why?

A: Yes, it is very true because patients w/MSA have OH symptoms early and severely in the disease course.  Researchers feel that if they can develop a treatment for OH in MSA, it will help those with PD.  I feel more studies should be done for OH in PD because improvements in OH improves cognition and physical activity for patients with PD.  Up to 30% of newly diagnosed PD patients have OH, so they would benefit from OH research.

Q: If I have severe OH, what kind of doctor should I see?

A: It depends on the specialty at different medical centers.  If you come to see a movement disorder specialist at Stanford, I have had specialized training in treating OH.  But, some movement disorder specialists prefer you see an autonomic specialist if you have OH. Other specialists who can treat OH include cardiologists or nephrologists.  You just have to find the specialist most comfortable in treating OH at the medical center where you are being treated.

Q: Is OH caused by a pathology in the brain?

A: People with MSA, LBD and PD have an abnormal buildup of the protein alpha-synuclein in certain brain cells.  These people can be affected by OH.  Other atypical parkinsonisms, like PSP, CBD, etc. that don’t have alpha-synuclein don’t have OH so we feel there is a connection between OH and alpha-synuclein.

Q: Does Stanford have an autonomic testing center?  Do you know where other autonomic testing centers are located in the US?  What is the benefit of having this testing?

A: Stanford has a very good autonomic testing center.  It is especially useful for people who have diabetes and PD, or in cases where symptoms seem more severe than what would be expected in PD so you would like to gather more information to determine if it is really MSA.  For these people, it may be a good idea to have autonomic testing. Stanford is probably best place for autonomic testing on the west coast.  Mayo Clinic in the midwest, and there are several places on the east coast are terrific, like Beth Israel.

Q: Some research shows that doctors see OH and automatically diagnose MSA.  What’s happening here?

A: I see people newly diagnosed with PD who have some OH and they have been misdiagnosed with MSA.  They actually have PD, but because PD medications lower BP, the medications can make their symptoms look more like MSA early in the course of their symptoms.  When there is a question as to whether someone has PD or MSA, autonomic testing should be done to differentiate between the two.  Seeing a movement disorder specialist rather than just a neurologist because they are specially trained to use set literature criteria that helps to differentiate between these conditions. The history of a person’s initial symptoms helps me figure out an accurate diagnosis.  Also, seeing how a person’s symptoms progress helps to determine an accurate diagnosis.

Q: What does autonomic testing look like?

A: The patient lays flat on a special bed.  There are several tests.  In one they infuse a medication that causes sweating to see how autonomic nervous system responds.  They may also have the patient do deep breathing to see if their heart rate and blood pressure responds correctly.  They also suddenly change the patient’s position from lying to standing (by tipping the table up quickly) to see how heart rate and blood pressure system responds. Depending on the body’s responses to all these different tests, they can determine if they are normal or abnormal.  If there are abnormal responses, it the problem coming from the brain or from the peripheral nervous system. That can be helpful in differentiating between disorders.

Q: What about Methotrexate?

A: That can be used if there is an immune component to the patient’s autonomic dysfunction.

 

Use of donated brain tissue in research

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One of the key benefits of brain donation is that it enables donated tissue to be used for future research.  Families are understandably interested in knowing how their loved one’s donated brain has been used in research.

The Mayo Clinic Brain Bank does not update families on this.  With hundreds of brains in their brain bank, it would be impossible to keep all families with all diagnoses updated.

So we recommend to families what we do — look at PubMed (pubmed.gov).  PubMed is a US government-funded database of all published research articles around the world.

Conduct a search

Conduct a search in PubMed (pubmed.gov) along these lines:

XYZ (diagnosis) autopsy confirmed Mayo Dickson

XYZ is either the clinical diagnosis of your loved one or the neuropathologic (confirmed) diagnosis of your loved one.

If the neuropathologic diagnosis, it’s best if this is written in the same language as was in your family member’s neuropathology report from Mayo.  Some common neuropathologic diagnoses we see are:

* Alzheimer’s disease

* Lewy body disease  (which are some of the words used when the diagnosis is Parkinson’s Disease, PD Dementia, Lewy body dementia, or dementia with Lewy bodies)

* frontotemporal lobar degeneration (which are the words that might be used when referring to frontotemporal dementia, primary progressive aphasia, or semantic dementia)

* progressive supranuclear palsy

* corticobasal degeneration

* multiple system atrophy

* motor neuron disease

* argyrophilic grain disease

The words “autopsy confirmed” are included in the search as we are hoping to find only the research that includes donated brain tissue.

The words “Mayo” and “Dickson” are included in the search as this refers to Dr. Dennis Dickson, the neuropathologist at the Mayo Clinic.  If any research is published around the world utilizing brain tissue donated to the Mayo Clinic, Dr. Dickson will be given credit.

Search results usually go back many years.  You can refine the search by clicking on “Publication Date.”  Example:  let’s say your family member died in 2016.  You can select “1 year” to find articles published in the last year.

Look at the “Methods” section

Say that this refinement yields one article.  You can look — for free — at the abstract of the article.  Pay attention to the “Methods” section of the abstract.  This will provide a date range.  Example – “We assessed the distribution and severity of [some] pathology in [number] autopsy-confirmed XYZ [diagnosis] patients collected from YEAR to YEAR.”  Did your family member’s brain arrive at the Mayo Clinic Brain Bank during that timeframe?

You can perform this same search every so often.

Sign up for email alerts

What we at Brain Support Network do is sign up for email alerts whenever research is published using this search criteria.

It is very exciting when your loved one’s donated brain tissue has been used in research!

We at Brain Support Network will try to keep our blog site updated whenever we see research utilizing donated brain tissue that we’ve helped make arrangements for getting that tissue to Mayo’s researchers.

Thank you for donating your loved one’s brain!  You’ve helped us all by enabling research.

Robin

 

Stanford/BSN Webinar – Orthostatic Hypotension in PD, MSA, and LBD, 9/18

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Stanford/BSN Webinar – Orthostatic Hypotension in PD, MSA, and LBD, 9/18

Brain Support Network (BSN) is pleased to announce its second webinar with Stanford Movement Disorders Center, one of our Northern California partners.

Update:  See our notes from the webinar here.

Join us for a free, one-hour webinar on orthostatic hypotension in Parkinson’s Disease, multiple system atrophy, and Lewy body dementia. The speaker is Stanford movement disorders specialist Veronica Santini, MD. And the host is long-time BSN MSA group member Candy Welch.  Please spread the word!

What is orthostatic hypotension?  It is the sudden drop in blood pressure upon change in position such as sitting up from lying down in bed or standing up from a seated position.

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Orthostatic Hypotension in Parkinson’s Disease, Multiple System Atrophy, and Lewy Body Dementia

When: Monday, Sept. 18, 2017
2-3pm Pacific Time (US and Canada)

Speaker: Veronica Santini, MD, movement disorders specialist, Stanford Movement Disorders Center

Register in advance for this webinar:

https://stanford.zoom.us/webinar/register/32ffda459570534466858a512be5123a

After registering, you will receive a confirmation email containing information about joining the webinar.  Save that email as it contains an important link with the meeting ID embedded.  You will receive reminders.

Note: If you can’t make it on September 18th, we encourage you to register for the webinar so that you will be alerted when the recording is available online.

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Further details on the webinar topic:

Dr. Veronica Santini, a movement disorder specialist, has extensive experience with orthostatic hypotension in the context of three disorders — Parkinson’s Disease (PD), multiple system atrophy (MSA), and Lewy body dementia (LBD).

Dr. Santini will address these topics:

  • what is orthostatic hypotension (OH) and how is it diagnosed?
  • is OH different in PD, MSA, and LBD?
  • what are the non-pharmacological treatments?
  • what are the pharmacological treatments?

There will be time for audience questions on OH.

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Further details on the speaker:

The speaker is Dr. Veronica Santini, a movement disorders specialist at Stanford University. Dr. Santini has special interest in the autonomic system.  She takes a holistic approach to patient care and seeks to integrate conservative and alternative therapies where appropriate.

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Further details on the webinar host:

The webinar will be hosted by Candy Welch, whose husband Bob had multiple system atrophy (MSA), confirmed through brain donation. She is on the Board of Brain Support Network, a nonprofit focusing on the four atypical parkinsonism disorders, including multiple system atrophy and Lewy body dementia. Candy will be speaking about brain donation for multiple system atrophy at the national MSA conference in October in Nashville.

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Register in advance for this webinar:

https://stanford.zoom.us/webinar/register/32ffda459570534466858a512be5123a

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Questions? Please contact Robin Riddle.