Support group

A support group is just that… Support! You can’t get the support you desire if all you do is attend and observe in silence! You get out of it, what you give in to it.” I kept hearing, ‘ Find a support Group.’ and I actually tried a group once but the exercises they had us do were not realistic. That is when I realized I had lost the ability to skip.

Recently, the MJFF started a Parkinson’s Buddy Network which I joined, and the very first person I reached out to, told me about a support group which meets every Wednesday in the villages, at a rec center just 15 minutes away from where we live., I have attended four times now, and I love it. The leaders always have something to share with the participants. This week it was providing information on specific studies that are currently enrolling PD patients to participate in in Gainsville. When the group have convened, they begin by participation in a drumming activity. They stand and pledge allegiance to the Flag. Then we are led in a ten minute sitting stretching routine and then we dance for around 40 minutes. Two or three ladies demonstrate the planned choreography to go with each song.. We have done the rhumba, and learned a line dance, Marches, and songs like YMCA incorporating the moves to spell. And they work on voices: shouting, singing loudly and counting, while dancing. This week, they had 16 chairs set up 1/2 on each side of a volly net. So After dancing we transitioned to playing chair volley ball with beach balls. The competitive spirit was lifting many of us off our chairs. No score was kept and they had two balls so while the observers, mostly care givers, were retrieving errant balls the second ball would be put in play.

I continue to learn new things. I feel gratitude for my many blessings.

The support group has a weekly newsletter, and I have learned they have 3 meetings each week plus a golf game one morning a week. One of the meetings is stretching, exercising, Big & Loud… held on Sunday . so we won’t be participating in it, or playing golf. The Monday one is for caregivers.

From the Newsletter: The importance of the 3 key benefits of Support Groups!

  • Improving understanding of a disease and your own experience with it. 
  • Getting practical feedback and treatment options. 
  • Gaining a sense of empowerment, control, or hope!
  • I don’t remember where I found this sales pitch for Support groups:

    “It is important that those of us with Parkinson’s learn as much about this disease as possible. We use this knowledge not in helping to find a cure but in helping us cope as we move about in our daily lives. Once we have found some new knowledge. We should not keep it to ourselves. If we have found a way to cope with the disease we owe it to others to pass this information on. Attending support groups is a way that we can do this. A way that we can find out, that we are not alone!”

    “I have been lucky to attend various support groups and have had the privilege to meet up with other Parkies across the country. One thing jumps out at me, those who interact in these meetings seem to be coping better with the disease, both mentally and physically, than those that don’t! They interact better with Parkies and Non Parkies a like! As hard as it may be, you must interact! If you have trouble expressing yourself to those of us with Parkinson’s, how hard must it be to express yourself to those that don’t? People like friends and family and especially your caregiver and medical support team! The more you partake in the support group, the more you can learn about different techniques in how to live with Parkinson’s and easier relate your disease to others. By sharing with others, you will be surprised to find out just how much in common you have. You will find out that what you are going through is not new. Somebody has or is going through it as well. Your participation will most likely encourage others to interact. By doing this, conversations start to flow. New ideas and solutions will seem to come out of nowhere! This is what you were probably looking for when you opted to attend a support group in the first place! This knowledge is a stress reliever!”

    Hospitalization Dangers Awareness

    Acquire an Aware Bag, before you need to have a stay at a hospital . the link tells you how t0o get your free Aware In Care bag and what all is included in the bag

    Parkinson’s Symptoms Awareness

    We must place this information into the proper hands!

    We must relieve the caregiver’s burden of the need to teach hospitals and first responders, especially during a difficult and stressful time.

    Hospitalizations Dangers……

    Parkinson’s CARE Awareness is a cause needed within the Parkinson’s community around the world. Those who CARE for those with Parkinson’s need more than the typical Parkinson’s information. They need education and support in order for them to help manage the disease and its impact, the collateral damage. These carers are often the ones who have the information and knowledge needed by the medical and pharmaceutical world.

    PBH-ORG.COM’s mission, to “provide those with Parkinson’s a higher level of care”, is designed to help their care person, family, friends and community through emotional support, education and programs. Our research has shown, educated, and supported carers profoundly impact the quality of life for their husband or loved one with Parkinson’s. The simple act of removing even a small part of the stress in the caregivers life can create a more positive and healthier surrounding for the one they care for.

    A shared with me by a fellow PwP

    Conversation on ideation

    Please read this discussion and offer your own thoughts. @mckchart said :

    I asked the same question (why me ) but get one thing straight it’s not a death sentence so be very positive and make sure you don’t let it get you down ,many a famous person has thrown in the towel and done the unthinkable ,just make sure you have someone to talk to when things get on top of you …….Parkinson’s educator ( feel free to contact me )

    ……………………………… Here is @pdpatient’s response :

    @mckchart, the “unthinkable” was excellently phrased by you and I couldn’t have said it better. However, you have inadvertently opened the proverbial pandoras box for some PwP’s such as me.

    I was formally diagnosed in the early summer of 2014 by an MDS af the University of Columbia, NYC. I fell into a rut and things went ft bad to worse and I was contemplating the “unthinkable,” which I really hadn’t thought through. My son was 14 and my daughter was 9 and I was the only breadwinner of the family. My only concern for my family was that I would need to die in such a way that it could not be labeled as a suicide. I had my policy long enough, but I could not trust in the system to honor the payout for a suicide.

    Around that time, my most favorite movie actor – Robin Williams had also received a bed diagnosis . I was devastated. Next thing I heard, he had committed suicide. Oops. I have said the “unthinkable,” but it is time for us to face the monster head on and find a way to make this widely known to PwP’s, newly diagnosed PwP’s and their families.

    Thankfully, my family came to my rescue and I agreed to take powerful medications that brought me back from the brink. I survived and my family is doing well still. I am grateful to God and the Universe for everything that I have been fortunate to receive despite my perception that others are more deserving than I. After all there are almost 8 billion people on this planet and I am only one of the lucky ones that is still alive

    I learned along the way that life doesn’t end with a Parkinson’s diagnosis. Every doctor that I have met has told me that I was not facing a death sentence. True. However, what they don’t say is that the possibility of suicide in newly diagnosed PwP’s is extremely high. This is an existential problem that is overwhelming in its impact and understated in its awareness.

    Unfortunately, I am still haunted by the ghosts of this seemingly “easy way out” or so as it seems. It is a path chosen by many and it rears its ugly head once in a while when the symptoms get worse.

    This is a topic that is ripe for involved and in depth discussion.

    …………………………… P Bear’s response

    I do not expect to do myself in over Parkinson’s. However, at one time I had an uncontrolled chronic pain condition that did cause suicidal ideation.

    Each person’s circumstances are unique. It is important to tend to our responsibilities. That said, if someone’s health situation is such that they deem it fitting and proper to leave, it is not my place pass judgment on that decision.

    I get that your mention of income is in the context of why it was appropriate for you to stay. However, income is not a measure of worthiness, and a more modest description would be preferable in my opinion.

    ……………………………. Sharon provided “

    You might want to refer to this Korean study found in science direct.…

    “Suicide risk in PD patients is approximately 2 times higher than that in the general population. Psychiatric disorders, and also L-dopa medication need further attention with respect to suicide.”

    Another good overview can be found in Neuropsychiatry Review

    “Suicide is consistently listed among the top 10 causes of death in the USA, with rates steadily climbing throughout the 21st century and reaching an annual rate of 13.4 deaths per 100 000 in 2016.6 7 It is a dominant cause of mortality among the elderly and persons with neurological diseases including stroke,9 Huntington’s disease10 and epilepsy.”

    ” Depression in particular is common in PD, with one meta-analysis suggesting that 17% of PwP suffer from major depressive disorder and 35% suffer from clinically significant depressive symptoms.”

    In contrast, suicide is not a major cause of PD death (which are falls and pneumonia.)

    Through Sarah’s eyes

    There are links included in her letter. I’d encourage you to take time to view them. Most of them seemed to be YouTube – Ted talks.

    IF I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.” (she is a physical therapist)

    “Dearest Friend,

    Today likely didn’t go the way you planned nor wanted it to go. Whether you’re feeling confused, frightened, angry, or apathetic, I want you to know I’m here for you. I know a new diagnosis of Parkinson’s can knock you for a loop, but consider this letter an invitation to a new chapter of your life – one that is much brighter than you may be imagining at this moment.

    I think the tendency is for someone to say “I’m sorry” right about now, but I’m going to hold off on that lingo because I have a feeling you’re likely not looking for sympathy. Instead, I want to offer my support. Please don’t consider this a hand-out (I know you’re not looking for that either) – I just ask that you consider what I’m about to say with a brave and open heart. Many people that I care about have stood where you stand now with questions, looking for hope. I’ve learned a lot watching them go through this process and, while I won’t pretend to know all the answers, what follows is my best advice for the next chapter of your life…

    #1 You are Not broken.

    It may be your default to take this diagnosis as a sign that your body is broken or even revolting against you but your body is simply telling you it needs serious TLC. It’s likely been telling you this for a while but up until now it’s been easier to ignore than pay attention to. Today your body shouted loud enough for you to hear it so now begins the journey of listening and tuning in to what it’s telling you.  Your body is resilient and always seeking health and repair – you just need to give it what it’s asking for.

    #2 Your Future has Not been decided for you.

    There will be naysayers and fear mongers, but a diagnosis of Parkinson’s is just that – a diagnosis. It’s a label for a collection of symptoms, not your prognosis or a crystal-ball prediction of what your future holds. It’s okay to believe you’ll get better, not worse, and that you’ll never need a wheelchair. This isn’t denial if this belief is paired with deliberate action on your part to improve your health and maximize your vitality. Your future is in Your hands, no one else’s, and your attitude is everything.

    #3 Don’t Hide.

    Your instinct is likely to hide your diagnosis and pretend all is well. The thought of walking into a Parkinson’s support group may make you want to cry – after all, who wants to be face-to-face with a future they’d rather not confront? Luckily, Parkinson’s symptoms aren’t contagious! Joking aside, the Parkinson’s community is incredibly strong and supportive and is an amazing resource. Just because others present with certain symptoms doesn’t mean that’s your fate and learning from their experience is valuable beyond measure. Find a local support group, meet-up, or just another like-minded person with Parkinson’s (PWP) who can act as a confidant through this process. There are many online support groups and you’ll definitely be able to find one that matches your current situation and attitude. Seek out resources that build you up and have a positive impact. Remember, there is strength in numbers and no one can (or should) go at this alone. JOIN OUR TRIBE – SIGN UP FOR OUR NEWSLETTER

    #4 Start Exercising. Now.

    The evidence is strong – regular exercise is neuroprotective (meaning it protects your brain) and promotes neurogenesis (meaning it helps develop new connections in your brain). The buzzword is “neuroplasticity” which means your brain is always molding and changing based on what you ask it to do. So, challenge it (mentally and physically) to change it for the better. The absorption and utilization of dopamine, the neurotransmitter that is lacking in Parkinson’s, is significantly boosted with a challenging and frequent exercise regime. The bottom line: You shouldn’t miss a day of exercise in the same way you wouldn’t miss a day of taking your medication. Yes, it’s that important! If you’re not an exerciser.. well, you are now!

    #5 Small changes = Huge difference.

    Observe your diet. We swallow food just like we swallow pills – why expect that one will have an affect on your symptoms and the other will not? Toxins come in many forms – pesticides, hormones, pollution, food additives and sugar, to name a few – and they burden your immune system and brain. Eat as organic and close to nature as you can afford. Explore supplements but realize you can’t supplement away a bad diet. (Healthy) fats are your friend. Find activities that calm your mind and fill your soul – do them daily. Meditate. Laugh. Prioritize sleep – this is where your brain heals and flushes out toxins. Treating your body like a temple will dramatically affect the way you move, think, and feel.

    #6 Take Action Now, don’t wait.

    You may feel you’re “not that bad”. Your symptoms are minimal and you feel you can pretend they don’t exist and for a while, yes, you’ll be able to go on as if nothing’s ever happened. Your urge to “stay normal” in the eyes of others for as long as possible is strong – I get it. However, when it comes to Parkinson’s there is no waiting, whether you have symptoms or not. Taking immediate action to uplevel your exercise program, manage your stress, regulate your sleep cycle, and overhaul your nutrition is crucial to preserving your precious brain and is the only option. Medication will help your symptoms and DBS may reduce your tremors, but these are simply masking the dysfunctions in your system, not fixing them. Very similar to the way money compounds in your bank account – not changing your habits now will only compound your problems down the line. Starting today, put yourself first and make your health and future your top priority.

    #7 Find Acceptance to Dissolve Fear

    Accepting where you are is different than surrendering – it inspires action instead of passivity. Embrace where you are in this moment. You may have heard the saying, “What you resist, persists”, so don’t push away your feelings. Instead, feel them fully. Cry.. Scream.. Laugh.. By being here, right now, you’ll find that you’re OK. Fear has no place here because you’re not in any immediate danger. The fear comes when you leave this moment and your mind floats into a fabricated future. Stay present and focus on what you can do in this moment. I believe in you. 

    “There is something you must always remember: 
    You are braver than you believe, stronger than you seem, and smarter than you think.

    — Winnie the Pooh

    With all my love and support,

    If you recently received a diagnosis… READ THIS

    When I joined The Invigorated Community on line discussion group for those diagnosed with Parkinson’s and their caregivers, I received this message. IT has been worthwhile for me to re-read.

    I met the woman who changed my life forever one month into my professional physical therapy career. 

    She walked, slowly and timidly, back to my treatment room for her initial evaluation with very little trace of emotion on her face.

    Once she was settled comfortably in her chair, she looked up and said: 

    “When I was diagnosed with Parkinson’s disease, my doctor told me I’d get worse over time and likely be in a wheelchair in 5 years. That was 3 years ago. 

    Since then I’ve stopped walking with my husband in the evenings because I feel so unsteady and I’m terrified of falling again. I’m tired all the time. My back and shoulders ache and my right arm is so weak that I had to give up doing my own laundry and cleaning the house like I used to. 

    I want to be able to take care of myself and get back to doing the things I used to do, but Parkinson’s won’t let me. I honestly don’t know what you can do for me, but my doctor told me I should come, so here I am.”

    This was the first person I had ever treated with a Parkinson’s diagnosis and her story immediately sparked a fire in my heart

    How could her doctor be so sure of her fate?

    So, I asked her to give me 30 days to prove to her that she didn’t have to succumb to the disempowering belief that there was nothing to do but take her medications, get her affairs in order, and pray for a cure. 

    Fortunately, she agreed. 

    We spent 3 days a week together, and she worked hard . Bike intervals… balance pads… walking drills… squats (so many squats!)… twisting and bending in all directions… and, of course, exercise homework for the days she didn’t see me… 

    Until we reached our 30-day mark.

    Not only was she back to walking a mile each evening with her husband, but her back and shoulder pain was also gone. She had enough energy to do her laundry and was regularly hosting their family and friends at their home she was able to clean herself. 

    She looked at me, smiling, and said: 

    “I never thought I’d be able to do these things again. You gave me my life back.”
    Heart . Explosion . 

    Immediately I knew that this was where I needed to be. 

    I don’t tell you this story to brag about myself or to proclaim myself some mystical healer. 

    I tell you because I want you to know this: 

    If you’ve been told that there’s nothing you can do but take your medication, get your affairs in order, and wait for a cure, you don’t have to believe it.

    What follows is a letter I wrote that I wish I could have given you on the day you were diagnosed with Parkinson’s disease. 
    Big hugs,Dr. Sarah King, PT, DPT
    Founder of Invigorate PT & Wellness
    She begins her letter

    “If I could turn back the clock and write a letter to every single one of my clients on the day they were diagnosed with Parkinson’s, this is what the letter would say.”

    “Dearest Friend, [Her words are so uplifting and beneficial… check back tomorrow, for the ‘rest of the story’.]

    Months of Pondering

    Ponderings… (I found this in my drafts and decided it was time to share it now.)
    When I could see a diagnosis of Parkinson’s was coming, I did a little soul searching. What is it I am to learn from such a diagnosis? Two conclusions came to mind.

    1.) I need to express more gratitude… giving credit where credit is due. I am so grateful for the inspiration and guidance that led us to make diet changes, do cleanses and utilize a variety of modalities and supplements that led, in part…to John’s improved health. But more than that, I confess there was a long period of time, during John’s illness when I questioned; When he was told, when given a priesthood blessing, that his health would be restored. (‘How can that be possible?’) … (I was fearful that I would be widowed, being left to raise the children without a father.) It brings to mind the pleading of a father in Mark 9:24 “Lord, I believe; help thou mine unbelief”. I am so very grateful that the promised blessing came.

    2.) Physician, Heal thyself. (a concept taken from Luke 4:23 … that I intend to take to heart.)

    We already learned to think out of the box when considering our health, so armed with knowledge gained from earlier quests, and faith that as we read in Mark 9:23 ‘all things are possible to him that believeth.” I said “Let’s do this.”

    I began to journal things I learned:

    1. There is a reason people are always telling me I look tired… It has to do with the inability of my face to move to show excitement, joy, etc. 
    2. I blink slowly and less frequently… which causes dry eyes… but the good news is… my feelings are dulled, so I don’t feel it.
    3. I can’t make almond flour with my wheat grinder. It would take one almond at a time and spit out almond butter.🤔 But I used my blender to process the almonds adding eggs…and was very pleased with the bread my adaption produced.
    4. etc…

    addendum: So, of course, remembering God has given man wisdom and insight into dealing with many medical conditions… And fully believing He expects us to build on each other’s knowledge and not feel a need to reinvent the wheel, with each new situation… we first sought advice from the medical profession. I am able to report after consulting with five neurologists, I have received the medications that enable me to keep functioning.

    I have been able to pull together some useful information putting it into a different format from any I have found. I hope my efforts help some of you feel informed instead of feeling a need to reinvent the wheel.

    I’m still in here…

    You will be able to see how the challenges have changed for Cory in the seven years since the post I shared from yesterday.

    from a blog by Cory King The Crooked Path posted Nov 2019

    “As time passes, I’ve learned to expect the unexpected from Parkinson’s. It’s surprised me with several unpredicted outcomes, some positive and some not so positive. Sometimes, it’s the physical and mental impact of the disease that’s surprising; sometimes it’s the unforeseen result on my relationships and social interactions. Sometimes I rise to the challenge; sometimes, not so much.”

    “Parkinson’s is a thief, and a sneaky one at that. It’s never honest about what it steals; it gets you while you’re not looking, and takes things you never had the good sense to value, but turn out to be central to a good life.”

    “Parkinson’s is stealing my ability to communicate. I always took my ability to explain, to comment, to describe for granted, and I didn’t realize how fragile it is. Not being able to communicate my thoughts and feelings without extreme effort is devastating, and it affects every other part of my life. It seems like such a simple thing, but Parkinson’s gets in the way at every turn.”

    “I’m typing this blog post, because my voice recognition systems no longer recognize my voice. Siri and Alexa don’t know what I’m trying to say. Dragon Dictate tries harder, but they all three come up with novel (and sometimes amusing) interpretations of my faint, garbled, slurred statements, and it takes more effort to correct them than it’s worth.”

    “Typing is a little easier, but only a little. I don’t coordinate movement between my two hands very well any more, so I have to type one-fingered. I occasionally can still think with some alacrity, but I type so slowly that the thoughts often get lost. My writing is less nuanced, and I often find myself taking shortcuts in my writing, opting for the simple and short rather than the complete and expressive. That may be a good thing.- I don’t know. I do tend to run on, but this externally imposed brevity is frustrating and irritating.”

    “Although I sometimes can still think with near “normality,” I often think as slowly and incompletely as I write. This is the most disturbing of my recent communication deficits, because it not only impacts the transmission of information, it limits my ability to have anything worthwhile to say. My interpersonal communication as well as my written communication are altered by this impact; even with people that know me well, I perceive that there’s a “pulling away” when I’m struggling with a simple conversation or fighting to respond to a question. It’s a negative feedback loop, too – the harder it is for me to talk and have simple conversations, the more I shy away from them. I’m becoming more socially isolated, because it’s just exhausting to try and have a simple verbal interaction with someone.”

    the feeling of horror I occasionally have about what’s happening to my mind and body, and my feelings of claustrophobia, of being imprisoned in my own body. On my worst days, it gets close to the feeling I have about being unable to express my most basic feelings, of being unable to defend myself in the most elementary disagreement, of being unable to correct a simple misapprehension or inject my belief and views into a conversation. My inability to be the “me” that’s still in here, but is trapped and voiceless.

    I can’t even i,\magine how many hours it took Cory to get this piece typed, and expresss himselg so well. (He would have errors just like what O just typrd… to go back and correct) (He would have to re order his thoughts to mske the piece flow.. by cutting and pasting.) Wat a example of fedterination… determination!

    …………………………………………….. an update typed 1/1/2021

    I haven’t written for almost a year and I’ve been thinking that my contributions to this blog were at an end. I’ve progressed significantly in the last year. My voice is usually not understandable, and I am using a wheelchair most of the time to manage my risk of falling. The disease remains variable, so things are not always bad, but I have a view now of what the end looks like, and it’s not pretty. I knew this was coming, but I honestly wasn’t ready for it. I’m not there yet, but it’s more real to me now than ever before.


    I was told by a caregiver about being compelled to have her PwP husband placed into a facility because he got confused and pulled a gun on her. Each PwP has their own unique set of symptoms… But I think I can safely say, I won’t do anything so drastic. There are no guns in the house. 🙂

    From Cory King’s blog The Crooked Path posted Feb. 2013

    “About 20% of PWPs eventually experience dementia, sometimes as severe as Alzheimer’s dementia.  It’s unclear which PWPs will have problems with dementia, but some of the risk factors include early olfactory disturbances, a presenting symptom of akinesia/bradykinesia instead of tremor, and early onset of postural instability. That unfortunately describes me pretty well, and a recent event raises my level of apprehension even higher.”

    “My wife and I have been married for 28 years, and we’re a pretty normal married couple.  In other words, we occasionally get angry with each other, and we’ve had some real knockdown drag-outs over the course of the last three decades. Several weeks ago, however, after a stressful but very enjoyable weekend celebrating my wife’s birthday, we had another argument. The circumstances are relatively unimportant. What is important is that, for the first time that either of us can remember in our entire relationship, I completely lost control. I could actually feel myself spiraling up, and in a strange way I could stand outside of myself and observe how foolish my behavior was, but I was powerless to do anything about it. My wife later told me that I was red in the face, bent over at the waist and hopping up and down, and shrieking.  I said terrible things to her, and she said that she was frightened of me. Rather than thinking about the argument, she said, she just wanted to make sure that I didn’t get between her and the door.”

    “That kind of behavior is completely uncharacteristic of me, but that’s the point. Personality changes, including paranoia, rage, and aggression, are early harbingers of later cognitive decline.  My wife sometimes says she can’t tell whether she’s talking to me or talking to Parkinson’s, and we can both take some small measure of comfort from the idea that it really wasn’t me that treated her in such a horrendous manner.  It hasn’t happened again, and it may never happen again.   However, neither one of us will ever be able to forget, and I think what makes me saddest is that I sense that I’ve lost something unrecoverable. Up to now, I’ve occasionally been obnoxious and unreasonable, and have behaved like the south end of a northbound horse, but I’ve never frightened my wife and I have never made her feel unsafe until now. It’s unimportant whether it was me or Parkinson’s, in the same way that it’s unimportant whether or not a dog that bites is responsible for it.  Pragmatically, it’s the bite that’s important, not whether or not the dog carefully considered the pros and cons and thoughtfully accepted responsibility for his behavior.  My sense of regret is enhanced by my knowledge that this disease doesn’t get better.”

    “This is about as real as it gets.  I know I probably shouldn’t be ashamed of a disease symptom, but there it is – I am.  I know it’s a little old-school, but I’m supposed to solve problems and make things better, not cause problems and make things worse.  At this point, I typically put on my curly wig and start singing about how the sun will come out tomorrow, how my friends and family are wonderful, and how fortunate I really am.  It will, they are, and I am, but tonight I feel a deep sense of loss.   I’m sick of eating this fried rat.”

    ……………………….. Cory made this post 7 years ago. The post I intend to share tomorrow, makes no mention of making his wife feel unsafe. I trust he got a handle on his behavior. But it is very revealing on how Cory’s Parkinson’s has progressed.

    One Face of Parkinsons

    Masked facies (also known as hypomimia) is the loss of facial expressions most commonly associated with Parkinson’s disease. It is so named because the condition gives the affected person a fixed, mask-like expression.

    In Parkinson’s disease, masking can develop as the progressive loss of motor control extends to the facial muscles as it does to other parts of the body. Masked facies can complicate an already difficult situation, alienating acquaintances who may be put off or disturbed by the apparent lack of emotional response.

    I’d like to refer you to a previous post done on 5/20/19…