Happy New Year and Thank You!
Brain Support Network would like to extend heartfelt appreciation to all our community members for contributions throughout the year, and especially in meeting our challenge grant in December 2017.
Together, in 2017, we have successfully completed 95 brain donations, published 600 unique posts to Facebook, and distributed over 250 more detailed email updates on LBD, PSP, MSA, and CBD. We were able to accomplish so much.
Best wishes for a happy and healthy 2018!
I read this advice today on a Yahoo!Group from a caregiver whose husband has passed away. You might find some value here.
Here are some things that helped us:
1. [My husband] wanted to know what was happening, so he uses his computer to research the disease in the early stages. I was able to help him with good resources. I’m both a nurse and a librarian, so this was easy for me. You might want to seek out the assistance of a reference librarian if this would be helpful for you. … We even enclosed [some print information about the diagnosis] with our Christmas newsletter shortly after [my husband’s] diagnosis. Learn enough to get a sense of what to expect, but don’t obsess. No two cases are exactly alike.
2. I wish I had set aside more time, especially early on when [my husband was] still was able to get out and about, to make plenty of memories to hold onto after he was gone. But I’m eternally grateful for those we did make time for. Even after he was home bound, we did some fun things together and with our adult sons. It was good for them to have those good memories, too.
3. Make a detailed list of things other people could help you with. You may not need or get them all, but make the list anyway. When friends ask what they can do, you’ll not be able to think of anything otherwise. With the list, you can choose something that person is especially suited to do and ask for that. When you’re feeling in over your head, use the list to seek out help as well. Do not hesitate to ask! You have people in your life who love you and/or Ted and want to help, whether you realize it or not – neighbors, church or other organization members, coworkers and/or former coworkers, community volunteers, family members. Don’t hide your needs and you’ll be surprised how much help is there you didn’t even know about.
4. Consider bringing hospice in sooner rather than later, especially if they offer palliative care in your area. They aren’t just for people who are actively dying! Mike started getting hospice services when he was still going to work every day, and was with them for nearly two years. They were immensely helpful with equipment, supplies, respite, ideas for workarounds, volunteer companionship and project assistance, finding facility care when the time came, nursing care and communication with [my husband’s] primary care doctor and neurologist, emotional and spiritual support, you name it.
5. Get the equipment you need when you need it, but don’t get ahead of yourself and spend a lot of money on expensive equipment you may only need for a short while. Hospice can *really* help with this. For the big ticket items, think about how you’ll be able to use them after [your husband] is gone. (I know. It’s hard to think about his being gone at this point. And you shouldn’t dwell on it. But do be practical.) we bought a recliner/lift chair that [my husband] basically lived in for more than 1 1/2 years. Almost two years after he left me, I’m still using it daily. We also bought a recumbent exercise bike so [my husband] could continue exercising after he could no longer ride his regular bicycle. …
6. If you haven’t done so already, get a durable power of attorney for yourself and set yourself up as the designated payer for social security. [My husband] was nervous about doing this, but he knew it was necessary. I kept him in the loop and got his agreement with every decision, and that let him know he could trust me to make the same decisions he would. His cognition was slow but lucid until the end, thankfully. Some people have to make those decisions without input from the person they are making them for. We waited almost too long to set the social security thing up because we didn’t realize they didn’t recognize a POA. Once [my husband] could no longer sign his name or speak clearly on the phone, both were essential and I was glad we had the foresight to put them into place before we got that far.
7. Know that when you are stressed, it may be hard to figure out what to do first even with simple things like getting up in the morning. I made myself index cards for the bathroom and kitchen with step by step instructions for morning and evening routines (4 cards). Then I put them back to back in two snack size ziplock bags to waterproof them. When I was so overwhelmed I was paralyzed just trying to figure out whether to brush my teeth or take a shower first, all I had to do was follow the list. I still use the bathroom list sometimes.
8. Keep a variety of grab and go meals on hand for when cooking or even planning is just too hard. If you have a good size freezer, use it liberally. Same goes for you slow cooker. When you do cook, make big batches and freeze single-serve microwaveable portions. If anyone offers to bring you a meal, let them!
Despite the fact that this email is about a talk given at a caregiver conference, there is nothing caregiver-specific about this email.
The Avenidas Senior Center Caregiver Conference was in late October 2017. Brain Support Network volunteer Denise Dagan attended the conference and shared notes from several of the talks a few weeks ago. One highlight was the talk by Stanford geriatrician Mehrdad Ayati, MD. The title of his talk was “Caregiving for Your Immune System.” Denise says “Dr. Ayati included some exceptionally useful information everyone should know about sleep.”
Denise’s notes are copied below.
Robin
Notes by Denise Dagan, Brain Support Network Volunteer
Speaker: Mehrdad Ayati, MD, geriatrician, Stanford University
Topic: Caregiving for Your Immune System
Avenidas Senior Center Caregiver Conference
October 21, 2017
Longevity doesn’t ensure a good quality of life.
Healthy aging doesn’t mean more pills, more doctors, more tests, and more supplements.
In studies of long-lived populations, the most important factors contributing to longevity was:
– Environment (safety and security, including socioeconomic status)
– Nutrition (influenced by finances, education)
– Lifestyle (very social societies with tight family and friendship bonds tend to live longer)
– Luck
– Disuse (lack of exercise and mobility)
– Genetics (only 25% influential on longevity)
– Disease (vaccinations, exposure to air/water/food/insect born illness)
The biggest thing doctors can do to help someone age well is to get them to modify their lifestyle. Doing that involves the same advice given to all caregivers:
– Exercise
– Have good nutrition
– Stimulate your brain (learn something new every day and be social)
– Stay up to date with your own health maintenance
– Get good sleep
Physical evidence of aging at the cellular level is the length of our telomeres (the tips of our chromosomes). Telomeres shorten with each cell division. If/when telomeres become too short the cell dies.
A 2013 study looked at study participant’s genes at the beginning and end of a 3-month period of improved diet, exercise and socializing. They found an increase of telomere length in that short a period, which correlates to healthier aging and overall lower cancer risk.
Sleep is a huge factor in maintaining our health and wellness. Adults should get 6-8 hours of sleep. Normal sleep goes through four stages in 90-110 minute cycles. Sleeping pills interfere with these cycles. Restorative sleep is in stage 3, just before the REM stage (Rapid Eye Movement, which is when we dream). There is actually 20% more brain activity during REM sleep than when we are awake.
There are two proteins that influence our sleep:
Adenosine – a product of muscle use, it builds up throughout the day and as it increases in quantity you become sleepy. This is why doctors recommend exercise to improve sleep. Note: Caffeine blocks adenosine receptors in the brain, preventing adenosine’s access to the brain while caffeine is present. That is why caffeine keeps you awake.
Melatonin – part of our circadian rhythm (day/night awake/sleep cycle). It builds up as a result of sunlight exposure through the eye. That exposure can be restricted by cataracts, retinopathy, stroke, Alzheimer’s, and more, resulting in sleep disruption. Wearing sunglasses in the late afternoon also restricts sunlight exposure at a critical time of day and can disrupt sleep.
Sunlight exposure and exercise can reduce agitation and help sleep for those with dementia.
Sleep is a restorative, regenerative time. During sleep the glymphatic system clears byproducts from the brain, including adenosine. If you don’t sleep well, you wake sleepy because adenosine is still present in the brain.
During sleep the brain migrates short term memories from the hippocampus to long term memory. This process doesn’t happen when sleeping pills disrupt your sleep cycles.
Dr. Ayati shared a circadian rhythm and sleep cycle chart with us showing when melatonin begins to affect our sleep, the fluctuation of blood pressure and heart rate throughout the day and night, etc. Click on this link to see the chart:
learn.pharmacy.unc.edu/insomnia/node/6
In people from middle age to the elderly it is normal to wake early and sleep early.
Teens typically have about a 2 hour delay from adults, so they sleep later and wake later. Early morning sunlight exposure may offset that delay and bring their sleep/wake times earlier. About 10% of teens have sleep disorders later in life.
The invention of the lightbulb allowed people to stay awake past darkness, when it is normal for us to be sleeping. More recent technologies (screens) further influences our sleep/wake times leading to increased rates of diabetes and obesity. We don’t get enough sleep because we use technology after dark, and we eat late, after our circadian rhythm has reduced our digestive activity for the night.
Over-medication is also a huge problem, especially due to medication interactions. Doctors tend to prescribe according to protocol, sometimes without thinking, “Does it make sense to prescribe a preventative medication to an elderly patient?” Statins, for one, don’t make any sense to start in someone who’s already 80 or 90 years old.
The effect of medications on the elderly is largely unknown because the elderly usually don’t participate in drug trials. When a new medication is released to the market doctors don’t even have anecdotal evidence (yet) of how well it will work for an elderly person or if it will interact badly with other medications.
Drug Cascade Syndrome – One example:
A patient complains about not sleeping well. His doctor prescribes a sleeping pill. The sleeping pill causes lack of energy and motivation. The doctor prescribes an antidepressant. The antidepressant causes weight gain. The doctor prescribes a statin and blood pressure medication.
If the doctor had taken the time to investigate more and implore the patient to change his lifestyle, the patient wouldn’t now have metabolic syndrome.
Maintaining good mental health and cognition goes a long way toward healthy aging, also. Dr. Ayati recommends learning or doing something challenging to our brains. We didn’t used to think that the brain could develop new pathways. In fact, now we understand that we only lose neurons faster as we age because older people have less activity, more anxiety, more depression, and less learning than young people who are in school, launching careers, rearing children, and more physically active.
In fact, one study found that taxi drivers in London have the largest hippocampus (short term memory center) in the brain. They have to adjust their routes depending on construction, traffic, passenger demands, etc., whereas bus drivers who follow a route set at the beginning of every day, did not have large hippocampus.
So, get out there! Move as much as you can (without hurting yourself) and learn something, volunteer, be sociable, and age healthfully.
Janet Edmunson, author of the book Finding Meaning with Charles, has given permission to share an excerpt on acceptance and denial. The “Charles” in the book’s title is Janet’s late husband. He was diagnosed during life with progressive supranuclear palsy, and with corticobasal degeneration upon death. We have many copies of the wonderful book to share within our local support group.
Though the book is primarily for caregivers, I think those with a neurological diagnosis can find great benefit from it. And the book has very few PSP-specific or CBD-specific details so it can be appreciated by everyone.
Check out Janet’s website (janetedmunson.com) at for details on her occasional webinars for caregivers and for her “positive affirmations” emails. Her book can be purchased at Amazon.com.
Excerpt from
Finding Meaning with Charles
by Janet Edmunson
Available in paperback, audiobook and e-book formats on Amazon.com
It wasn’t until about the third year of Charles’s disease that the Serenity Prayer had its greatest impact on me. But I have always loved it, and it means the most to me when I am going through tough times: “ . . . grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”
I have really latched onto the concept of “accepting the things I cannot change.” Though we tried to fight it, Charles’s disease was going to take away his abilities, and eventually, his life. Our choice was to accept that or deny it.
I don’t know for sure what Charles’s choice was. He was determined not to let the disease change his life and goals. He tried hard to keep contributing as best he could. That was how Charles tackled everything in life. He denied the obstacle and set out to conquer it. He wouldn’t succumb. He fought all the way to the end.
Is that acceptance or denial?
I, however, consciously chose to accept it and make the most of it.
My greatest learning through this experience came when Charles and I attended the Mind/Body Medical Institute program which, at the time, was held at Beth Israel Deaconess Hospital in Boston. The instructor, Peg, talked about acceptance, explaining that the way to accept the things that we have no control over, such as an illness, is to make meaning out of it. Wow! Make meaning out of it! Her explanation suddenly allowed me to consciously look at what Charles and I were going through and identify where it helped us grow and where it allowed us to have an impact on others that we wouldn’t have had without the adversity of his disease.
Taking a proactive approach to making meaning out of our situation helped me to positively focus on the opportunities and not plunge into depression. I was determined to help Charles reach whatever potential his life could give. And I was amazed to see how Charles became even more influential – even after he could no longer talk. As a caregiver, I found it important to focus on this greater purpose. My goal for caregiving went beyond making sure Charles was safe and physically cared for. I wanted to ensure that he still lived life to the fullest whatever degree the disease would allow.
Accepting Charles’s disease and making meaning out of it didn’t mean that we didn’t feel pain. Coping with this type of degeneration was difficult physically and emotionally for Charles, the person with the disease, as well as for me, the caregiver. We faced many trials – some successfully, others not. But we both became better people through experiencing his disease.
Scott Peck starts his book, The Road Less Traveled, with the sentence “Life is difficult.” He goes on to explain that once we accept this, we can begin to make the most of life. Charles and I had discussed this concept a number of times when we faced problems at work or with other people. The misfortune of his disease forced us to face our greatest life difficulty, truly testing our ability to accept adversity and then move on.
I don’t know of anyone who expressed this thought better than Viktor Frankl in his book, Man’s Search for Meaning. Frankl survived the atrocities and indignities of a concentration camp in World War II.
He realized there that to renew our inner strength, we need to have a future goal. He quoted Nietzsche’s words, “He who has a why to live for can bear with almost any how.” I found that “finding meaning” is a way to define the why. The act of looking for and finding meaning in Charles’s disease focused and empowered me.
The Parkinson Voice Project (parkinsonvoiceproject.org) has hosted a few webinars on various aspects of Parkinson’s Disease this year. In November 2017, they held a 90-minute webinar with Connie Carpenter Phinney, former championship speed cycler and co-founder of the Davis Phinney Foundation. The topic was the importance of building a productive care team. Much of the webinar is applicable to non-Parkinson’s situations. Though most of the ideas were focused on the person with a diagnosis, many aspects of the talk were applicable to caregivers.
You can find the recording here:
www.parkinsonvoiceproject.org/ShowContent.aspx?i=1844
For me, these were the highlights of Connie Carpenter Phinney’s talk that applied to both caregivers and care recipients:
* Stay social! Lack of socialization is as bad for your health as smoking two packs of cigarettes daily.
* Get HIPAA release forms signed so family can communicate with all doctors.
* Designate your healthcare power-of-attorney to make decisions about your healthcare when you can’t.
* Set up your support team. (This is true for caregivers and care recipients.) You can start small — family, one friend you rely on, one doctor you trust, and one other person coping with the same diagnosis. You will need more support than your family. Put your friends to work whenever they offer. Others coping with the same diagnosis understand your challenges and have information about resources, symptoms, tips, and tricks.
Here’s what Connie said about caregiving:
– You didn’t ask for it. Neither did the person with Parkinson’s.
– You’re not alone, but it might feel like you are.
– You can do this, though you may feel like you can’t.
– It’s okay to dislike PD. Avoid disliking the person with Parkinson’s.
– Teach your person with Parkinson’s to accept help from those other than their primary caregiver so that you won’t burn out.
And here’s Connie’s key advice to those with Parkinson’s:
– Avoid resentment. It is negative and it will not serve you.
– Mind your manners. Apologize if/when you lose your temper.
– Give praise. Thank your caregivers.
– Accept help when you have Parkinson’s.
– Reward with smiles. Smiling is good practice and good medicine.
– Move. Get outside. Exercise keeps you moving when you have Parkinson’s. Sunlight helps you sleep.
As is customary(!), Brain Support Network volunteer Denise Dagan listened to the entire webinar and shared her notes. See below.
Robin
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Notes from Denise Dagan, Brain Support Network Volunteer
Strategies for Building Your Care Team to Live Well with Parkinson’s
Speaker: Connie Carpenter Phinney
Webinar Host: Parkinson Voice Project
November 11, 2017
As you age you start living more in the present and the past, and not in the future. Without a goal there is no future. With Parkinson’s you don’t know what the future holds so you become content with the present.
Connie grew up in a home with her mom having chronic MS, three rambunctious sons and Connie as her only daughter. Connie and her husband, Davis, who has Parkinson’s disease, learned a lot from caring for Connie’s mother and Connie’s Olympic training, that they apply to their Parkinson’s journey.
– Be flexible. Take things as they come.
– Live in the moment.
– Focus on you and continue trying to improve.
Who carries you, as the caregiver? Who’s looking after you? Are you looking after yourself? In this journey you need to learn to ask for help.
The thing(s) about caregiving.
– It is not called caretaking. It is not just one person giving and the other taking.
– Caregiving is a journey on a two way street. It’s a long journey.
– It’s fair to ask, who cares for me? It may take some work to figure out who cares for you. Your person with Parkinson’s needs to care for their caregiver or make sure their caregiver takes care of themselves.
– Doctors as caregivers. What?! Connie never thought of the physicians in the equation as being caregivers, but it is a team. Think about who’s on the team. You want your primary doctor to view themselves as a caregiver and as part of the team.
– One caregiver told Connie that being a caregiver was the toughest job he had ever done and he had been a Navy Seal.
– According to a government survey, 60 million Americans consider themselves to be caregivers.
– We ALL care. It is not a one-way street. Connie prefers to see herself as a care partner. She gives care but also expects care.
Harness your caregiving superpower. Get out. Do what you love. Reduce stress. Most caregivers identify to some degree with having some angel wings and a halo (occasionally tarnished). Parkinson’s asks caregivers to slow down and be more forgiving, magnanimous, patient.
What I know:
– You didn’t ask for it. Neither did the person with Parkinson’s.
– You’re not alone, but it might feel like it.
– You can do this, though you may feel like you can’t.
– It’s okay to dislike PD, avoid disliking the person with Parkinson’s.
What we know about Parkinson’s Disease. It’s not just neuroscience.
– It can turn your world upside down.
– It’s 24/7. A friend of Connie’s with PD doesn’t like to blame every outburst on PD, but it pervades every moment. Connie gave him permission to, “pull the Parkinson’s card,” because PD is an unpredictable 24/7 thing. He needs to apologize and do his best to keep it together, but he should cut himself a break.
– PD involves daily concessions most people don’t have to make. Slip on -vs- tie shoes. Button down shirts take a lot longer. Having to allow much more time for things, or always running late.
– It rarely ‘plays nice.’ Just when you need to be somewhere you have symptoms that get in the way of your attending or making it to the event on time.
– It’s as unpredictable as it is complicated. There are similarities between people w/PD, but many differences, too.
– Tremor is the tip of the iceberg. People outside the Parkinson’s community don’t understand that non-motor symptoms are part of the equation (constipation, incontinence, pain, vision problems, sleep issues, etc.) Even facial masking and the social consequences. People think you’re not paying attention, stupid, or drunk.
Notes for the person with Parkinson’s:
– Avoid resentment. It is negative and it will not serve you.
– Mind your manners. Apologize if/when you lose your temper.
– Give praise. Thank your caregivers.
– Accept help when you have Parkinson’s. Teach your person with Parkinson’s to accept help from those other than their primary caregiver, to prevent that care partner from burning out and compromising their health.
– Reward with smiles. Smiling is good practice and good medicine. It moves your facial muscles!
– Move. Get outside. Exercise keeps you moving when you have Parkinson’s. Sunlight helps you sleep.
Notes for the Parkinson’s caregiver:
– Patience. Infinite patience.
– Re-Set. (You might need a do-over to re-set the rules of engagement.) The way you have interacted before in your relationship may no longer work now that Parkinson’s is a factor. You may not be communicating well together since Parkinson’s entered the picture and you need to find a better way to work together. Try to get to a place where you don’t have to apologize, but you do anyway.
– Choose to keep it positive and upbeat.
– Stay social. Lack of socialization is as bad for your health as smoking 2 packs of cigarettes daily.
– Reminisce. Looking back can help you look forward. It’s good for your brain.
– Move. Exercise. Do what you enjoy that is active/physical.
– Be spontaneous and selfish once in awhile. Connie took the opportunity to go see the total eclipse with her son at the last minute. She found it so spectacular she vowed to take Davis with her next time.
The Rulebook (aka Game Changers):
1. Reboot, restart, rewrite your rule book. Write it down and have a conversation with your partner about what’s working and what’s not for each of you.
2. Never let your person with Parkinson’s go to the doctor by themselves. They aren’t very good advocates for themselves. Even if you send them with a list they they don’t report back all the details.
3. Tape record the appointment because you each remember different comments the doctor made. Taking notes distracts you. Take notes from the recording so you have the important information handy.
4. Get to know your medical providers (neurologist/movement disorder specialist). Connie recommends finding a movement disorder specialist and explained you really want a neurologist who specializes in movement disorders, even if it is only a once-in-awhile appointment to confer with your regular neurologist. Your primary care physician (PCP) should be communicating with your neurologist/movement disorder specialist so your PCP is up to date on all the symptoms and treatments you have brought to the neurologist/movement disorder specialist. You may have to insist that your PCP receive neurologist’s notes. Once, when Davis’s regular movement disorder specialist was out of town and they had to see a different doctor, they gained a new perspective. The new doctor gave them seven areas on which they could improve upon after 17 years with the disease and all their education about the disease. They did a cognitive evaluation so they would have a baseline for Davis’s degree of dementia. Much of the cognitive issues in Parkinson’s have more to do with the slowing of processing speed, which is what they found with Davis, but now they have the baseline to compare to over time.
5. Don’t be afraid to challenge and change. Challenge what you’ve been doing. You don’t get better by doing the same thing. You can only improve by challenging yourself. If you cycle, add some weight training, voice training, etc. to keep up with the pace of the degeneration of Parkinson’s. You can get function back, but you have to really work at it.
6. Inform yourself about side effects of medicines vs. symptoms of disease. Understand the side effects of medicines and how they affect behaviors vs. behaviors affiliated with the disease. The caregiver needs to understand what to look for as far as aberrant behaviors. Some people take up gambling, for example. That can be a side effect of medications so telling your doctor and adjusting dosages or prescriptions will solve the problem. Feel comfortable communicating with your Drs.
7. Safety first. There is balance between minimizing the chance of falling vs. getting enough movement to keep moving. Pain killers/opiods to treat an injury from falling can result in even more injury from falling due to dizziness.
Some things you need to draw a line in the sand and say, “No more,” like ladders, shower curbs, etc.
Install grab bars, ramps, etc. before you need them.
Rulebook Essentials:
1. Driving – No attendees had been tested to see if they are still okay to be driving, but several admitted feeling uncomfortable being a passenger while their family member with Parkinson’s. Occupational therapy evaluation will test you to see if you are okay to be driving. It is part cognitive, part reflex/skills based. It is not cheap but it is less expensive than it can be if your person with Parkinson’s has an accident and the person they hit finds out they have Parkinson’s and are not fit to drive. If you are okay to drive, you need to keep driving because lack of practice means losing skill week over week.
2. Disabled parking pass. Not to be close to the store, but to have more door swing to get in/out of the car.
3. Sleeping arrangements. REM Sleep Behavior Disorder (RBD) is when someone acts out their dreams. It is very disruptive and can be injurious to a co-sleeper. Best to have twin beds in the same room if you sleep with someone who has RBD.
4. Household safety. The person with Parkinson’s should help around the house as much as possible. Mobility and manual dexterity, cognitive skills. If you don’t use it, you lose it – BUT – no ladders, cleaning gutters, and other activities dangerous to someone with gait/balance issues.
5. Understand the benefits, timing and side effects of medicines, especially if you change dosing. Taking meds on time is incredibly important. Be sure it is happening if symptoms are fluctuating, even if they set an alarm on their phone, because they could be forgetting what the alarm is for or sleep/snooze the alarm, then forget about it. You could end up with too high a dose complaining about symptoms that could be due to inconsistent medication use.
Also be sure to order/refill meds prior to running out to reduce stress/hassle.
Don’t wait!!!
– Learn to ask for help. Groceries, sweep the floor or walkway, any little thing is helpful.
– Learn to accept help. Most of the people the Phinneys find helpful now, didn’t know them before PD.
– Teach your person with Parkinson’s to accept help early on so later they are willing to accept help.
– Don’t wait until you feel exhausted.
For all y’all:
– Be informed. Don’t overrule your doctor, but understand why they are recommending x, y, or z.
– Avoid isolation. Embrace the Parkinson’s community. They will serve you well.
– Choose optimism. It is your best friend during difficult days.
– Seek contentment. Be satisfied with what you’ve got. Stay off social media that looks like others are happier than you are.
– Humor heals. It is distracting from your personal challenges. Turn off the news.
– Keep the faith. Whatever helps carry you from day-to-day. Focus on happy.
Disability
It is important to consider when and how to apply for Social Security Disability. If you are under 60 applying for Social Security Disability will fast track you onto Medicare. Your first attempt at the paperwork will probably be rejected. They usually come back and require more information. Be persistent.
Dream Team
– Family First but you will need more
– Friends, especially those you meet after Parkinson’s diagnosis. Old friends may be caught in old patterns and not know how to adapt and be helpful and supportive. Don’t blame them for that, just seek new, supportive friends.
– Other people with Parkinson’s in their family. They understand your challenges. They have information, tips and tricks to share.
– Therapists – Physical, Occupational, Emotional therapists. Connie recommends physical therapy regularly, especially with someone familiar with Parkinson’s.
– Physician(s) – PCP informed by your neurologist/movement disorder specialist. Be sure the person with Parkinson’s signs a HIPAA release form so their family can communicate with all the doctors from the beginning. You will also need to designate your healthcare Power-of-Attorney who can make decisions about your healthcare when you are unable to.
Start Small
– One friend you can rely on
– One doctor you trust
– Another person with Parkinson’s
Keep a Calendar
– Weekly classes
– Appointments
– Reminders for birthdays, weddings, trips, educational seminars
– Do what you love! Connie paints, cycles, etc.
QUESTION AND ANSWER
Q. Does Davis still bike?
A. Yes. He uses an electric assisted bike to keep up with friends and family. They also walk and Davis has joined a singing group.
Q. What are the 7 things the substitute neurologist recommended?
A. Take the driving evaluation, look at seeing an ENT about having collagen injections in the throat (they did have some success with this), botox for dystonia in one foot, medication changes, cognitive testing, weight training because Davis tends to falls backward but strength training may help that.
A. The Parkinson Voice Project doctor fully endorses getting different perspective in any area of life.
Q. How to go about seeing another doctor without making your regular doctor angry?
A. Explain to them you are trying to build a team and want them to communicate together. Most doctors know people shop around, especially when they have a serious, long term illness. May work best to have similar, but not the same specialties like neurologist & movement disorder specialist.
Q. How do you deal with Medicare says you can only have PT or other therapies for a limited time?
A. Every insurance company is like that. Your doctor needs to continually support you and repeatedly prescribe it. Try to find a physical therapist who knows about Parkinson’s and can be of the most help to you.
A. There is a Medicare Therapy Cap. Parkinson Voice Project has raised $1M grant for physical therapy centers around the country to support expanding voice therapy for Parkinsons.
Q. How does Connie encourage Davis to do his PT without starting an argument? Do you nag, or not?
A. In general that is where another person with Parkinson’s comes in handy. When you sign up for something like Rock Steady Boxing with a group or friends, they can hold you accountable. For typical PT like taking large steps, it helps to do it with them and try to make it fun and funny. The exercise that works is the one that you’ll do! Mix things up a bit so it is fun and not boring. Until you meet someone who can no longer communicate, you don’t appreciate how important it is to keep working on speech. Same with getting out of a chair. Nagging never works.
Q. If you have a neurologist do they have a movement disorder specialist in their office for a consult?
A. No. Usually, movement disorder specialists are in a group or specialty clinic. Your neurologist may not recommend a movement disorder specialist, especially if you live in a rural area.
A. The speech therapist makes the analogy that her license allows her to treat a child, but she has 20 years experience with Parkinson’s, so she shouldn’t be treating children – but her license allows it. Asking someone with Parkinson’s who they see can help you find the specialists you need.
