Parkinson Canada Maritime Support group STW Parkinson Zoom Invitatin fo 12 noon this Thursday the 16th
Good morning, everybody We had a great session last week with psychologist Dr. Jo Durup. Of course, when we have a speaker we lose the usual chit chat, so here is an idea. Stuff That Works is crowdsourcing patient data from all over the world. 2.9million members – 21,000 Drs. – 107.2 Million data points covering 1,247 conditions. It is free to join, you can remain pretty much anonymous. They are not selling or promoting anything. Great place to research your side effects or compare medications. i.e. nothing to lose and a lot to gain. Please visit the site at www.stuffthatworks.health I have been working with them for sometime as a volunteer facilitator. I host a session on the 3rd Thursday of every month for North America and Europe and one for Australasia on the 4th Wednesday of every month, I’d like to invite everyone in the Parkinson Canada Maritime Support Group to join us in the STW group. How often do you, as a person with Parkinsons or a carer, chat informally with others in the same boat?
Our challenges are similar all over the world Join us for a chit chat on zoom this Thursday 16th May @ 12 noon Atlantic Canada time for 1 hour. Starting at 4pm in the UK – 11 am Eastern time, 10 am Central, 9 am Mountain, 8 am Pacific.Discusssion revolves around potential treatment, gadgets we find useful, exercise options, side effects and often, just how to live with PD. Join Zoom Meetinghttps://us06web.zoom.us/j/83488563639?pwd=MGovcXpXNFBMcWhoWTlTUzRkT0E1QT09Meeting ID: 834 8856 3639Passcode: 879469 All best wishes Jon Jon DenmanZoom Facilitator Parkinson’s Canadawww.Stuffthatworks.health1-902-820-3300Nova Scotia, Canadajondenman@denexindustrial.com
Accepting that you or a loved one has Parkinson’s disease can be an important step towards living the best life possible with PD. Coming to a place of acceptance is different for everyone. Some MyParkinsonsTeam members are relieved to finally have answers, and accepting their diagnosis is a logical next step. Other members go through periods of denial or depression before accepting their diagnosis. For many, accepting Parkinson’s is an ongoing process. No matter your path to acceptance, you’re not alone. Support is always available at MyParkinsonsTeam.
For many MyParkinsonsTeam members who went years or months with undiagnosed symptoms of Parkinsonism, learning that they have PD can be a relief. “I accepted my diagnosis from the beginning,” one member wrote. “At least it explained why I kept shuffling my feet and couldn’t write anymore. I thought I was losing it.” Another member shared a similar sentiment, “They are 100 percent sure it is Parkinson’s. It’s a load off our minds to finally have a definite diagnosis.”
If accepting a Parkinson’s diagnosis took you longer, or you’re still working towards acceptance, you’re in good company. Denial, depression, and grief are common on MyParkinsonsTeam. “Still coming to grips with this diagnosis,” one member wrote. “Traveling between denial and feeling loss.” A caregiver wrote, “My husband has PD. We felt gut-punched when it was diagnosed five years ago.”
Identifying healthy coping mechanisms can help you and your family process difficult feelings and learn to adjust to the new normal of Parkinson’s disease. MyParkinsonsTeam members shared the following coping techniques that have helped them accept their diagnosis and manage their mental and physical health:
Stay present: “Don’t dwell on the past or languish in the future. Stick to now,” one member advised.
Don’t rush yourself: “How long should it take [to accept a PD diagnosis]? Well, I think that we all go at our own pace – whatever that may be,” a member who’s lived with Parkinson’s for several years shared.
Be grateful: “My daughter would ask me to find three amazing things for each day and write them down. It was to keep me focusing on finding the positive,” a member suggested to another.
Find sources of joy: “I ended up adopting two kittens and they have been a comforting distraction and therapeutic joy!” a longtime member wrote.
Seek support: “I still have the occasional pity party, and I make good use of my therapist, an understanding neurologist, and a physical therapist,” another member who’s lived with PD for several years commented.
Connect with the PD community: “We each go to a support group which is really helpful for being with people who understand,” a wife to a husband with Parkinson’s wrote.
Sometimes accepting a Parkinson’s diagnosis is an ongoing process. “I don’t think we are ever necessarily done,” one member wrote to a newly diagnosed teammate. “We think we are, something pops up, and we find out we still have more work to do.”
“I don’t think we ever fully accept it,” a member diagnosed four years ago wrote. “I will have days where I don’t really think about it and others where I feel overwhelmed and angry over everything about PD. We just try to find a way to live with the changes and accept our new normal.”
Members who’ve come to a place of acceptance notice an improvement in their quality of life. “I made a choice last night to accept my diagnosis and do the best I can to lead a more productive life,” a newly diagnosed member wrote. “This morning I awoke to an incredible peace. I want to thank all of you [on MyParkinsonsTeam] who have helped and encouraged me when I was so depressed and in danger of losing my faith.”
On MyParkinsonsTeam, the social network and online support group for those living with and caring for someone with Parkinson’s disease, members talk about a range of personal experiences and struggles. Accepting a Parkinson’s diagnosis is one of the most discussed topics.
Here are some conversations about accepting a Parkinson’s diagnosis:
For many people living with Parkinson’s disease (PD), pain is an uncomfortable reality. Stiff muscles, dystonia, constipation and nerve pain related to PD are common causes of pain – and up to 75 percent of people with PD report experiencing pain during the course of their disease. Pain is a difficult symptom to recognize and treat and it can fluctuate day to day, or even over the course of a day. And what works to help one person’s pain may not be the best approach for another.
In this Third Thursdays Webinar, our expert panel will discuss why Parkinson’s causes pain and ways to treat it, from standard treatments such as medication adjustments and muscle relaxants to alternative therapies like acupuncture and cannabidiol, or CBD. Tune in to learn more, including steps you can take to manage pain and reduce discomfort.
Once you register, you will receive an email from “Michael J. Fox Foundation Webinar” with a link to watch the webinar. You will receive this email automatically upon registering, two days before and two hours before the live event.
This week, PD Warrior founder Melissa McConaghy and head online coach Jason King demonstrate movements and strategies involved in a complete workout circuit to provide people living with Parkinson’s disease (PD) a full-body workout.
During previous weeks in this six-part series, you learned how to warm up, tackle tremor, overcome bradykinesia (slow movements), boost agility, and perform neuroprotective exercises. This week’s videos share a complete exercise routine for people with Parkinson’s disease. You can modify the specific exercises based on the type of PD you have and your level of comfort with exercising.
Consider these steps before you work through the videos:
If you aren’t accustomed to exercising, check with your physician first.
If your doctor gives you clearance, it is suggested that you warm up prior to exercising and stretch after you complete your session.
Try to engage in exercise three times per week.
It may be normal to feel some muscle soreness following exercise.
Warming up, stretching, and staying hydrated can help combat muscle soreness.
Keep a chair or other item nearby for stability in case you need to lean on it or sit down.
Here are the videos in the PD Warrior circuit routine, starting with some warm-up exercises. You’ll need a tissue box or an item of similar size for one exercise, and a chair for another. Written steps for each exercise are included: You can write them down or print them for reference.
Simple ladder climb — Marching in place, maintain a steady rhythm as you alternately lift a knee to chest level while raising the opposite arm toward the ceiling. Depending on your range of movement and comfort level, you may choose to lift your knee to hip level and/or reach your arms out in front of you as you march. Repeat the motions three to five times.
Single-leg stance — Squat down with your legs hip-distance apart. Next, stand upright with all of your weight on the left foot while thrusting your arms up and out to the sides. Repeat the movement, but this time, put your weight on the right foot. Try to hold the pose for a moment before switching legs. Repeat the movement three to five times.
Rotations — Stand with your legs hip-distance apart. Pivot your feet as you twist from side to side. After a couple of movements, extend your arms out to the sides, if possible, as you continue to pivot side to side. Repeat this movement several times.
Once you’re warmed up, try this exercise circuit, consisting of four exercises.
Start by placing a tissue box or other similar-sized item in front of you.
Stand with your feet hip-distance apart, then raise your left leg to chest height and step over the box with your right arm stretched in front of you and your left arm stretched behind you.
Hold that pose for several seconds, and then step your right leg over the box so that you’re standing with your feet side by side.
March in place, taking four big steps as you turn 180 degrees to face the item you’re stepping over.
Repeat this move, leading with your right leg first, then the left leg again. Repeat the exercise three to five times.
With your legs hip-distance apart, hold your fists to your chest.
Turn on your feet as you pivot your body to the left while pushing your left arm out from your chest.
Raise your left leg in front of you to hip height while pulling in your left arm and extending your right arm forward. Hold this position for several seconds.
Lower your leg to the floor behind you as you pull back your right arm and extend your left arm again in front of you.
Repeat this move, but turning to the right this time, and then the left again. Repeat this movement three to five times.
Starting by planting your feet hip-distance apart and your arms straight to your sides.
Shift your balance from side to side, moving your weight to the left leg and lifting the right leg off the floor, then shifting in the other direction. This pendulum-like movement will resemble a penguin slowly waddling in place.
If you feel comfortable with the movements, add your arms: Rotate them straight out to your sides, then in front of you, then back to the sides as you shift your weight from the right leg to the left and back again.
Perform this move three to five more times while making a complete 360-degree turn.
Sit in a chair — without arms, if possible — with your legs spread in front of you.
Sit on the edge of the chair and grasp the bottom with your right hand for stability.
Rotate your left arm down toward your right leg as if you’re punching the ground. If possible, turn your torso so that you’re looking behind you.
Sit up as you reach that arm out to your left side, then rotate it behind you. Hold on to your right leg with your right hand to prevent it from dropping toward your left leg.
Return to your original position, then perform this move, punching down with your right arm toward your left leg.
Repeat this move from one side to the other three to five times.
MyParkinsonsTeam has partnered with PD Warrior — an organization that specializes in providing rehabilitative exercise programs to people with Parkinson’s disease — to help spark your exercise journey. One way to live well with Parkinson’s disease is to make exercise part of your life — as long as your health care team is on board. Participating in an exercise program may help you manage PD symptoms, slow the progression of the disease, and keep you in a healthy routine.
PD Warrior offers in-person and online regular, targeted, and personalized exercise programs to help reduce parkinsonian symptoms — from the comfort and privacy of your home.
PD Warrior’s signature 10 Week Challenge is the leading exercise rehabilitation program for people with Parkinson’s. Designed by renowned neurophysiotherapist Melissa McConaghy, the 10 Week Challenge is tailored to suit the individual needs of participants and their specific types of Parkinson’s. This rehab program will make you move, stretch, and sweat, but most of all, you will feel good. Find out more about the 10 Week Challenge.
PD Warrior’s online gym offers the option to join an intimate group, one-to-one private coaching sessions, or a combination of both. No matter what you choose, you will be training with an experienced PD Warrior coach who will work to your ability and provide exercises specific to your Parkinson’s. Find out more about PD Warrior.
Find Your Team
Through MyParkinsonsTeam, you can join an online social network for those living with Parkinson’s disease. In doing so, you will gain access to a social support group of people who are facing similar challenges and understand what you are going through. Start a new conversation on MyParkinsonsTeam.
Is Your Parkinson’s Progressing? 15 Symptoms To Track
Parkinson’s disease is a progressive disease that advances differently for everyone. Symptoms of Parkinson’s and how quickly the disease progresses vary from person to person.1 Keeping track of your Parkinson’s symptoms can help your doctor understand how your condition is changing over time and whether your medications are still working well. Certain symptoms tend to start or worsen as Parkinson’s progresses. Over time, medications for motor symptoms may not work as well and may need changes to your treatment plan such as:1Higher dosesMore frequent doses, or other changes to your medication scheduleAdditional medicationsTracking these symptoms can help you have better conversations with your doctor about your Parkinson’s disease symptom status and the best course of treatment for you or your loved one.Try The MY PD-CARE ToolSymptoms That May Mean Parkinson’s Is Progressing11. “Off” periods when Parkinson’s medications stop working2. Tremors and shakiness, which may affect the other side of the body3. Visual changes4. Pain and changes to the sense of touch5. Worsening constipation6. Dizziness upon standing up (orthostatic hypotension), perhaps leading to more falls7. Need to urinate frequently, urgently, or during the night8. Loss of motivation or enjoyment in activities9. Feelings of depression or anxiety10. Extreme sleepiness during the day11. Rigidity or stiffness12. Walking and balance problems, which may require the use of a walker13. Bradykinesia (slowness)14. Daily tasks may become more difficult, take longer, and require more assistance15. Dyskinesia (extra movements)
Tracking Parkinson’s Symptoms
For an easy way to track your Parkinson’s symptoms, visit MY PD-CARE. You can either fill out the questionnaire on the web page or download and print a paper copy. The results will help you have better conversations with your health care provider about your symptoms, your disease course, and which treatment options may work best for you.
If you or your loved one with Parkinson’s hasn’t consulted with a movement disorder specialist yet, consider asking for a referral. Learn about ways a movement disorder specialist can help with Parkinson’s symptoms.Try The MY PD-CARE ToolTalk With Others Who UnderstandMyParkinsonsTeam is the social network for people with Parkinson’s and their loved ones. On MyParkinsonsTeam, more than 98,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s. Do you or your loved one have Parkinson’s and concerns about progression? Do you track your symptoms? ABBV-US-01274-MC v1.0 Approved June 2023
Reference1. Armstrong MJ, Okun MS. Diagnosis and treatment of Parkinson disease: a review. JAMA. 2020;323(6):548-560. doi:10.1001/jama.2019.22360
Why did I receive this email? MyParkinsonsTeam is working with AbbVie Inc., a global biopharmaceutical company, to help educate people about the importance of symptom management and to equip people with a helpful tool to track symptoms and improve communications with their doctor. MyParkinsonsTeam receives compensation for sharing this information with you. It’s just one way we empower our members with relevant information while keeping MyParkinsonsTeam free for all.
Parkinson’s is a funny old disease to get your head around. I do not mean funny in the classical “LOL” sense … but I mean funny in the sense that, to me, it is a dilemma, wrapped in a riddle, enveloped in a cocoon.
I cannot quite figure it out. There are layers to this disease. Layers to the plethora of motor and non-motor symptoms that I currently experience (and will begin to experience in the future.)
Unexpected changes
So, just when I think I have reached a degree of understanding in the delicate daily management of my symptoms, a new layer or unsuspecting surprise is revealed. This means I am unexpectedly thrown a curveball.
For example, a new symptom might suddenly appear, or an existing symptom might drastically deteriorate in severity. Or perhaps the unexpected change might be that, without any warning, a tried and tested Parkinson’s medication that I have taken for years might suddenly stop working.
This example is particularly problematic because it can lead to a noticeable deterioration in symptoms, anxiety about the progression of the disease, and challenges in managing the daily devastation of the pain and discomfort of the disease.
The challenges of a neurodegenerative disease
There are lots of challenges that I experience with having this diagnosis. For me, some of the more worrying and problematic are:1
It is degenerative. As time progresses, my symptoms will only get worse.
There is no cure, and if I am being honest, I am highly dubious there will be one in my lifetime … if, ever.
The advancements in medication have been slow. The principal medication (levodopa) prescribed was first discovered in the 1900s.
The progression of my disease is unpredictable and unique to me. It has been quite aggressive in a short space of time.
Pain is becoming a more problematic issue as the disease progresses. In the beginning, it was never an issue.
Grieving what I have lost due to Parkinson’s
However, the biggest challenge (and therefore the hardest thing to accept) about this disease is its sneaky thief-like tendencies. Without any warning or without any sound reason … it surreptitiously snuck into my life. Upon its shocking arrival, I experienced a loss of many, many things. I experienced a type of grief I had never encountered.
For example, the first thing it stole from me was my ability to be a competent and capable parent. For the first 2 years of my precious daughter’s life, I was rendered utterly useless and dependent on the goodwill of those around me. My family was forced to altruistically rally around and care for us both, while all silently shocked and saddened by the visible deterioration in my mobility.
I was undiagnosed. Unmedicated and thus very immobile. I was bereft that I was unable to cuddle and care for my baby girl in the way I wanted to. The only thing I could do during this terrible time was stay seated on the sofa. Stiff, stuck, and sinking into a sea of sadness.
The mental decline
Parkinson’s disease knocked me further down by stealing my mental and emotional well-being. This was the second notable loss that I experienced. Previously, I had possessed a happy, go-lucky demeanor. I had a vibrant social life, and I enjoyed a range of hobbies and interests. I enjoyed being alive. I had a zest for life.
During the 18 months it took to diagnose this disease, I found myself schlepping and dragging my stiff, slow, broken body to countless doctor and hospital appointments. I experienced an endless barrage of the same, dull, and repetitive lines of questions. I became a mumbling parrot, reeling off the same sequence of events of how I had noticed the first symptom when I was commuting to work … blah … blah.
Depression and disability
Meanwhile, behind the scenes, I felt the devastating mist of depression descend into my mind. A negative, deafening, and destructive cacophony of thoughts dominated my mind. Thus, as well as struggling with a physical disability, I was now going to have to struggle to manage and come to terms with an intensely debilitating “reactive” depression. Huzzah! A double whammy of depression and disability engulfed me and became a part of my daily reality.
So, sadly, the joy for life I had once possessed drastically diminished and dissipated with the advent of this disease. When my health changed and I became housebound, or more accurately (as I mentioned previously), “sofa bound.” I was forced to silently weep over the demise of my mental well-being.
Evidently, other various minor and major losses have also been experienced in the decade since I was diagnosed. But I am curious, what losses have you experienced and have some losses been harder to accept than others?
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I must admit that since being diagnosed with Parkinson’s disease (PD), I have had bouts of positive and negative thinking. Since everyone has a different experience dealing with PD, I know it can trigger positive or negative thinking.
However, I also know that for me, there is no purpose for negative thinking, except if I am planning a pity party! Negative thinking, in my opinion, is not good for my health when dealing with PD symptoms.
Practicing positive thinking
I try to practice positive thinking every day because it helps me handle my symptoms. With a positive attitude, I am able to handle the trials and challenges of living with PD in a healthier way.
By adopting a positive way of thinking, I have improved myself emotionally, mentally, and have decreased my stress levels. In addition, my anxiety level is not so prominent concerning the future progression of this insidious disease.
Utilizing positive self-talk
I think positive thoughts and I continue to repeat these thoughts regularly. As a result, my mood is more optimistic. On the other hand, if I am thinking negatively, this type of self-talk is not good for me. It causes me to feel sad, depressed, and does not serve a purpose. I do not benefit from rehashing negativity in my life.
While utilizing positive self-talk, I do not get depressed. My psychological and emotional state respond favorably, and I reduce stress. Because stress can take a physical toll on the body, by not being stressed out all the time, I can improve my health. Moreover, chronic stress can impact life-expectancy. Through positive thinking, I have developed better coping skills during stress provoking times in my life.1,2
Reframing my thoughts
When I think negatively, I am amplifying the harmful aspects of my thought process and reducing the impact of positive thinking. With negative thinking, I anticipate the worst thing that could happen without any indication that something else is imminent. It causes my views on life to be black or white, with no gray areas.
Hence, it was necessary to adjust my outlook. Now when I start to think negatively about living with PD, I try to put a positive twist to those thoughts. When difficult news or situations occur, I try to reframe it by finding some humor at those times to destress the situation.
I try not to be with people who are negative. I prefer to surround myself with positivity and positive people because negativity stresses me out. Positivity edifies me. To further support this, I think of things that have happened in my life that made me feel thankful.
How exercise impacts my mood
Exercising also positively affects my mood. When I participate in physical therapy, I change my dark thoughts into bright ones. For example, I used to say to my physical therapist, “I cannot do that in therapy. It’s too hard for me,” or “I am not getting any better at trying to walk.” Now, I reframe it by saying, “I will give it another try.”
If I am not in the mood to do physical exercise for an hour, I say, “I can do this exercise by breaking it down into smaller parts.” I feel that practicing positive self-talk can be a beneficial way of helping people with Parkinson’s disease.
I have said I do not, and will not, accept Parkinson’s disease (PD). I do not deny that I have it. I see doctors and take medications. But acceptance, as I understand it, requires consent. And as I have said before, I never gave Parkinson’s permission to enter my life, let alone take it over.
A plan for living with Parkinson’s
What is a good approach to analyzing any situation or decision? I have listed pros and cons to help evaluate issues over the years. Typically this has helped me make a satisfactory decision and plan next steps with clarity.
I wonder if it will help me establish a good plan for talking about Parkinson’s as well as living with it in the best way possible? A list of pros and cons follows, simply as each topic occurred to me.
Daily life
Pro: I say that I live with Parkinson’s instead of accepting it. Con: I live with a rude, obnoxious roommate.
During the day, the roommate that is PD forces me to follow an annoying medication and meal schedule. I have to think about doing previously automatic movements, which becomes fatiguing by itself. It wakes me at all hours of the night. It does this with frequent trips to the toilet. It does this by trapping nightmares and stuffing them in my head. It also does this by delivering muscle cramps or night sweats.
The cost of PD
Pro: I saved money while working and was able to set aside funds toward retirement. Con: Parkinson’s has made me spend my money on things I need to live with it.
This is especially evident when I look at the cost of insurance, insurance supplements, medical appointments, and prescription medications. At some point this may include adaptive devices, home health services, or residential expenses because it has destroyed my ability to live in my home. Well, this is a rabbit hole I think I will stop following for now.
Impact on relationships
Pro: PD has brought new situations and people into my life. Con: It has made me give up things I want to do and people I want to see.
Overall, I am glad for new situations and new people that enhance my life and with whom I can work to be an advocate for persons with PD.
Exercise
Pro: Exercise is good for me so I maintained a reasonable exercise routine throughout my adult life with the anticipation of living healthier longer. Con: Exercise is required daily, which sucks some of the fun out of it.
The anticipation is now more about all things avoidance. I seek strength in order to avoid needing help with chores and taking care of myself. I seek balance in order to avoid being a fall risk as long as possible. I seek aerobic capacity so I can avoid needing supplemental oxygen. Exercise is good.
I can choose to live well with PD
I know there will be criticisms of my pros and cons list. I am certain I am biased. This is written in first person, after all. Here is one last thought …
I wonder if accepting Parkinson’s is a good choice in the long run. Maybe I should try to live well with PD by waving a white flag of surrender. Maybe I should consider it more like the stalemate in chess that allows one to call the game a draw instead of a loss. Technicalities. Semantics. Glass half empty or full?
In the end, one pro that I will embrace is choosing to learn all that I can to live as well I can for as long as I can. This is what I would do even if PD never entered my life. Maybe this pros and cons list helped remind me of that. I will take that as a pro and stop while I feel ahead in this PD game. How do you live well with Parkinson’s? It is your move.
To a person living with Parkinson’s disease, anxiety is probably an all too familiar, hideous condition. Posy’s story may ring a few bells.
Following a serious case of streptococcal pneumonia in 2002, Posy suffered a horrible depression. This illness followed her around, like a “Black Dog” for many years (these are the words used by Winston Churchill to describe his own depression.)
After several months of this misery, she finally stopped taking her morphine-based medication. This medicine had been prescribed upon her discharge after a 2-week hospital stay. After stopping the medication, Posy hoped she would return to life. However, what followed was a double whammy!
A forewarning of Parkinson’s?
One night, Posy experienced excruciating electric shocks throughout her body. She had heard of restless legs as her father suffered these. But these ghastly feelings continued without respite through the night, preventing Posy from getting any sleep. Was this a heart problem?
In the morning, Posy called an ambulance. On her way to hospital, the paramedics took her blood pressure. As it was “normal” (150/90), they deduced that Posy was just having an anxiety attack. No amount of explaining that Posy’s blood pressure was normally 90/58 had any effect.
She was given diazepam and sent home. Now, Posy wonders if this awful akathisia (which became a recurring unwelcome visitor) was a forewarning of the Parkinson’s disease diagnosis that was to come in 2017. It seemed untreatable, except with benzodiazepines.
Anxiety takes over
Posy was then cursed with overwhelming anxiety throughout her whole body. It dominated every minute of every day. The depression did not move out to make room for this new delight. On the contrary, the 2 monsters decided to co-exist in Posy’s body and brain. She wanted only to hide in bed. Speaking on the phone made her heart beat out of her chest. Socializing was unthinkable.
Unable to cope with therapy
Deciding she must try therapy, Posy was dropped off at the door by her Dad. At first, she just could not take a step. Listening to the therapist nearly drove her insane. The light seemed to block her vision. He was so annoying, asking such predictable questions, offering such obvious insights. Posy wanted to scream!
What can you do?
Now, Posy will repeat the vital words of encouragement with which she concluded a previous article.
To anyone out there going through this: you are not alone! I, and many, many others, really can feel your pain. You are definitely not alone, and you are not crazy.
In her previous article, Posy also outlined small actions to help cope with depression. But, what can you do to cope with the symptoms of anxiety? The same tips apply:
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