I have discovered a blog by a caregiver of his wife who suffers with Parkinson’s Dementia. I find it very inciteful

https://adjunctwizard.com/2020/09/27/it-has-been-a-couple-years-now/amp/
I have discovered a blog by a caregiver of his wife who suffers with Parkinson’s Dementia. I find it very inciteful

https://adjunctwizard.com/2020/09/27/it-has-been-a-couple-years-now/amp/
I found this article from ‘Parkinson’s News Today’ insightful… I’m appreciative to the PD Support group . They help me project my voice.

“People with Parkinson’s disease verbally communicate less than those without the neurodegenerative disorder, according to a recent study that discovered that patients speak about 60% less than their healthy peers.”
“Apart from the tremors and movement issues associated with Parkinson’s, the disease also can disrupt aspects of a person’s speech, including volume, rhythm, and intonation. Such difficulties in speaking lead those with Parkinson’s to rate themselves as being worse at conversing compared with their counterparts without the disease, according to researchers.”
“Now, a new quantitative study shows that, in fact, patients speak for fewer minutes each day than those without Parkinson’s.”
“In some cases, a person with Parkinson’s will hesitate to speak or pause when speaking, leading even attentive listeners to jump in or talk over that person,” according to a press release from the University of Nebraska-Lincoln. Angela Dietsch, PhD, an associate professor in the university’s department of special education and communication disorders, conducted the study with Jeff Searl, PhD, director of the undergraduate program in communicative sciences and disorders at Michigan State University.
+The study reporting their findings is titled “Daily Phonatory Activity of Individuals With Parkinson’s Disease,” published in the Journal of Voice. The two researchers investigated the amount of phonatory activity — also called phonation or voicing, but basically, how people speak — among Parkinson’s patients compared with those without the disease.+
“The team looked at 30 age- and sex-matched individuals, half diagnosed with Parkinson’s and using dopaminergic medications — commonly used medicines to replace the dopamine lacking in Parkinson’s patients — and half without the disease, who served as the control group.”
“All participants were asked to wear vocal monitors — specifically, the VocaLog vocal monitor — for three days while going about their daily lives. The monitor measures the number of one-second windows in which the sound is increased over zero and then reports that relative to how long the monitor is worn. That allows for the determination of %PA, or percentage of phonatory activity, which essentially quantifies how much time people speak.”
“This method gets around the usually used questionnaires, in which participants often overestimate their speaking time.”
“The Voice Handicap Index score — a self-reported measure in which patients report how much their voice disorder impacts their quality of life — also was assessed.”
“Results showed that patients with Parkinson’s had, on average, 54 fewer minutes per day in which they spoke, resulting in about 60% less speaking than those without Parkinson’s. Those with Parkinson’s had 11.1% phonatory activity over the course of the three days, while those without the disorder had an activity of 18.6%.+
“Additionally, the Voice Handicap Index was found to directly correlate with the amount of speaking the patients did. Those who scored themselves higher on the index, meaning they had less quality of life due to a higher impact of vocal issues, tended to speak less than those who scored themselves lower.”
“Overall, “the results indicate that PwPD [people with Parkinson’s disease] engaged in less verbal communication in their daily environment compared to adults without Parkinson’s disease,” the researchers wrote. “The findings support reports in the literature indicating that PwPD often have reduced communication participation.”
“Furthermore, the team believes that the percent of phonatory activity may be a useful measure to assess communication changes in patients with Parkinson’s disease, as a way to evaluate both disease progression and treatment.”
By Yedida Y Bogachkov Phd
The Parsonson’s Support Group I joined had a marvelous guest speaker today.
Mr Yuiska, PT, Sports Physical Therapist although retired he has a free website. And for the people in the Villages, he offers a free exercise class each Monday.
His Mantra: “Sit Less..Move More”
http://www.pilatesplusforboomers.com
He has so very many training videos and helpful tips. PLEASE go pick his brain. I am going to copy a little of hi message he shared today: “Learn to improve balance and decrease falls, strengthen yoour body and improve your lifestyle utilizing Pilates core stabilization/proper posture.”
What is Pilates Posture?? stand erect, by elongating the spine, keep the head on the shoulders, not the chest. Breathe out and pull belly button upwards/backwards to the spinepulling pelvis up and level. Y\Think of the pelvis as a bucket, keeping it level. Breathe out maintaining the level pelvis.”
He also gave this advice: View Video: http://wwww.homeability.com click on “Ihow to get up from the floor MacGyver style. Getting off the floor.”
I found this on the PdCure.org site: Services an animal can provide are:
To learn more about PD service dogs and view a couple videos showing training and how they support people with PD go to this link: Service animals
I have over 400 blog posts saved in my drafts. When I typed Service Animals into my site search to see if I had already addressed the subject, it pulled up this wonderful article which came out of the 2018 World PD Congress. Since it was still in my drafts, I chose to combine into one post to share with you.
Are you by nature a planner or a procrastinator? As a clinical social worker in a PD Center of Excellence I work with people with Parkinson’s (PWP) and their care partners at critical crossroads of decision making, it is challenging to balance planning ahead versus staying focused in the present. My social work training and decades of experience help me appreciate that how and when we take action in the PD arena, is similar to how we behave in other arenas. So, back to the opening question: do you tend to be a planner or a procrastinator? Are you unsure which category you fall into? Perhaps that’s because we don’t fall neatly into these discrete categories. However, we do have styles and patterns for how we make decisions. Consider these different strategies in planning a dinner party.
The planner, weeks before the party, consults many cookbooks and online recipes and may try the recipe out ahead of time. Planners will try to set the table a day before and does food preparation as far ahead as possible. When guests arrive music is playing and appetizers are plated.
The procrastinator decides to see what looks good at the market and will base the menu on that, shops for what is fresh and enjoys the excitement of trying something new. If there is last minute preparation, guests may be asked to put on an apron and help out!
One approach isn’t better than another. The planner may feel more pressure to have all aspects of the dinner well-orchestrated. The procrastinator may be more adventurous and is known by friends and family for spontaneity.
A great deal of humor is used regarding these two groups of individuals. Some relevant quotes for planners: “A goal without a plan is just a wish” and “By failing to prepare, you are preparing to fail”. And for the procrastinators there is humor. For those who tend to delay there are these adages: “Tomorrow is often the busiest day of the week”, or “If it weren’t for the last minute, I wouldn’t get anything done!” and consider this one, “If procrastination was an Olympic sport, I’d compete in it later!” As is the case with all humor, joking is a way of coping with stressful life situations. We also know that black and white categories usually don’t hold true. In the case of procrastinators or planners most of us have some characteristics of both personalities.
The purpose of this blog is not about shame or blame for planners versus procrastinators! Rather it is about looking at how different styles for problem solving affect critical life decisions. In my clinical work I am often asked by people with clients is it “too early” or “too late” to plan for lifestyle changes related to the diagnosis? We know that from the moment the PWP hears the words “You’ve got Parkinson’s” life is dramatically changed. There are cascading decisions that begin as one leaves the physician’s office after the diagnosis is made. Questions arise such as: when and how to share the diagnosis, should I continue to work, is driving safe, should I move, when do I explore hiring help at home and how early should I have the difficult discussions about end of life. That is a lot to consider; fortunately there is usually time to carefully consider options. Also, it is definitely the case that one size does not fit all. For example, in the case of sharing the diagnosis, a younger patient who is still working, has very mild symptoms and has young children may make a different decision around disclosing the diagnosis than an older person who is more symptomatic, retired and has grown children. Eventually, the diagnosis is shared; hopefully once shared the PWP and care partner reap the benefits of garnering important emotional support and practical help.
Let me review in greater detail one decision that is somewhat more complicated than sharing the diagnosis and often a topic for discussion with clients. “When do I need to think about a move?” This decision brings even strong people to their knees! Who can forget Dorothy’s famous refrain, “There’s no place like home” (The Wizard of Oz). Attachments to home run deep; we associate home with raising children, important relationships with neighbors and the neighborhood, family holidays celebrated in the home and that intangible feeling that “Home is where the heart is”.
There are many factors affecting the decision to move. The commitment to remaining at home and adding home services, as needed, may work out well. However, the decision about moving is often motivated by safety. Older homes with stairs may present safety risks, especially for someone who has a history of falling. Moving may be related to “downsizing”; part of a process that many begin to consider once children have left the home and the upkeep of the older house becomes a burden. Moving can bring the PWP and care partner geographically closer to where adult children are living. Or, a move to Retirement or Assisted Living helps for better access to supportive services when these are needed. But, there can be many barriers to moving. I am not surprised when clients tell me, “There are just two things that keep me from making a move: cleaning out the attic and cleaning out the basement!” The emotional and physical work of a move and cleaning out decades of accumulated “stuff” can paralyze anyone. It is a surprise for some to discover that efforts to “downsize” can mean paying more for a move to a smaller but newer home, condominium or Retirement community. So, how does anyone with PD accomplish this larger than life task?
There is a lot of downside to not planning for this important transition. The process can begin early. Some clients talk about starting to clean out closets and the dreaded basement and attic slowly. Ask for help from adult children, especially since the clean out may include many mementos from their childhood (for example the cherished soccer trophies, or the bag of stuffed animals nobody could part with). Professionals can be hired to assist with the actual cleaning out of belongings. They are skilled at not letting the process get bogged down in emotionality, yet sensitive to the process of “letting go” of things (big and small). A geriatric care manager can help think through the important “where” of a move.
Friends and family can play an important role with this, too. Creativity is important! One client moving from a large home to a one floor condominium planned a ceremony to bestow blessings for her new condo. Following her Jewish traditions she gathered close friends to say the Shehechayanu; a prayer celebrating special occasions. She and her husband wanted more emphasis on the sweet than the bitter of this move. I ask clients to think about other transitions they have made and we consider strategies they used to get through those difficult times. It is likely that what helped in the past can be helpful now. Finally another important tip in surviving the emotional turmoil of a move is to understand that with any transition it is normal to experience a sense of loss over what you are leaving. We all cling to what is familiar. What we can’t know in making a move are the benefits in the new living situation. Following a move, one can feel liberated from all of the clutter and “stuff” from the prior home. A new living space that is accessible, promotes independence, reducing fall risks. Or, there may be new social opportunities of a move to a retirement community. If the move puts you closer to family, visits can be more frequent and spontaneous.
While I chose to focus on a move as a major life transition, there are general guiding principles that can be helpful at any decision crossroad:
The ongoing task of care planning in the face of PD is challenging! But you will get through this. I talk with clients about spirituality. Prayer and belonging to a religious community can be important for healing and connection. But I use a broader approach in conversations about spirituality. I ask the question, “What gives you strength?” A rich discussion usually ensues. Strength, for some, is garnered by being in nature, or music can help one transcend stress, others turn to gathering the family for ceremony and celebration. There are so many ways that each of us find to cope and remain resilient. Think about what has given you strength in the past and tap into those resources as you find your way.
https://www.worldpdcongress.org/home/2018/8/14/procrastinator-or-planner-at-the-crossroads
What would you like for Non-Parkinson’s patients to know? P
I have included a few of the responses that seemed representative of other PwP. Being a PwP, I acknowledge, just because you have seen one Person with Parkinson’s, you’ve seen one Person with Parkinson’s. No two people have the exact same combination of symptom’s. I noticed not very many people mentioned drooling. For me, if I could cease drooling, I’d know we were on the right track. Sue. …………………………………………………………………………… “First, our increasng klutziness (knocking over water glasses, slipping on the pavement, missing the chair on the way down and ending up on the floor, etc.) are not due to carelessness or ignorance, or lack trying to avoid an accident. A PD patient’s brain is just not working at 100%. It takes a miracle of interconnected sensors, brain control centers, eye-body coordinatio, and so on, to walk straight and do other “ordinary” balance tasks, but the information channels between brain and muscles is faulty. Please note that we feel much more humiliated by our own inability to put the dishes in the dishwasher quietly than anyone else who is saying in a scolding voice, “Can’t you be more careful??!!” Robert
“If you are living with PD (I am loath to say “suffering from”) you probably recognize the not so subtle suggestion in the responses that the non-motor symptoms of PD are often the most devastating part of being a club member. I still cringe when family members and friends say “…but you look so good.” Yes, I too have motor symptoms, but Sinemet is a formidable ally in the struggle with most of them. For most of the motor symptoms I can tolerate the situation by finding workarounds or thinking my way through a situation (e.g. how to button a shirt) or setting up modest, achievable goals (working in the garden in 15 minute sessions). Since everyone who knows my condition recognizes the characteristic motor issues of PD, I need only do things slowly to indicate the reality. But the sleep disturbances, absence of restorative sleep (Occasionally I need 12 hours of sound sleep only to wake up exhausted), fatigue, brain fog, anxiety, depression, voice changes (which have made me difficult to understand), etc. are far more the thieves of life which are not visible to others. When I am asked how I feel, I respond with my immediate sense but always add the caveat that the non-motor symptoms are the true torture. I then provide a litany of those symptoms. I also add the fact that the social withdrawal which is also a reality of this condition is more due to the non-motor symptoms.” Bonanno
‘My reactions are totally different to Bonanno‘s. When someone asks me how I am, I actually smile/try to smile depending on the day, and say ” not too badly thanks, how are you feeling?” I realize that when someone says ‘how are you’ it is just a way of saying hello. They actually may be concerned but it is not their fault or problem that I have PD. It is certainly not my fault but it is my problem, and I really don’t want to burden them with my hassles, that is, not if I want them to remain my friends. I know they care, and that’s what counts.” Clive
This was taken from a post on a forum I participate in. The contributor uses the sign in name of … PrayN4aCure
“I wanted to give this forum an update on my participation in the clinical trial at the University of Texas in Houston. I was reluctant to comment beforestudy was completed but was compelled by my wife to do so. It has been nearly one month since my first infusion, but my family has witnessed some clear improvements.”
“The first thing that they noticed was my freezing has completely stopped. The next biggest changes are that I no longer have any tremors, my rigidity has lessened, and my gait has improved where I no longer drag my right leg. What I noticed, is my speech has improved along with my vision has become clearer, and my jaw and tongue no longer quiver when I open my mouth.”
“I only had a 33% chance of receiving the real stem cells on the first leg, so I wasn’t expecting anything, but I did notice after 2 two weeks I started feeling a little flushed each day. My blood pressure remained steady, and I temperature was normal, but I remember the Dr. asking me during the infusion how I was feeling and if I felt flushed. Just an observation.”
“So if I got the Placebo, all I can say is sign me up for another. I am patient 37 out of 45 and I am in the last group. Group 1 has already received their 2nd infusion and mine is scheduled at the end of February. I remain cautiously optimistic and hopeful that this study will prove to be a viable therapy for those who have any form of neuro-degenerative disease, until a complete and effective cure has been has discovered.”
“I will keep y’all updated.”
Explanation of proceedure involed: additional information provided by another forum member using the user name of Despe
“Bone marrow extraction from a healthy donor was obtained by aspiration under local anesthesia. Testing was performed using FDA-approved licensed kits by Gulf Coast Regional Blood Center. MSCs were expanded using a Terumo Quantum Bioreactor29 by the Center for Cell and Gene Therapy of Baylor College of Medicine under current Good Manufacturing Practices designated by the FDA. The total quantity of allo-hMSCs was reached in 3 passages. Thawing was initiated on infusion day, and allo-hMSCs were aliquoted into a 250-mL transfer pack with 5% buminate. Release tests were performed on the pooled cells (purity, viability, cell dose, and microbiological testing).”
I am pleased to alert you to a new book published by some friends of mine. We met, because of the Parkinson’s group in the villiages. John and I attended one of their seminars and deffinitley learned some valuable information which has already been of great worth. I recommend it to both caregivers and PD warriors. Sue
A new book, “Our Parkinson’s Disease Instruction Manual: How to have a good life while coexisting with Parkinson’s disease” is now available at Amazon.com. It can be purchased as a digital download or as an 8 ½ x 10 inch printed book. The digital version can be read on a Kindle, tablet, computer, or smartphone. The digital version costs $4.95 or, if you have a Kindle Unlimited subscription, there is no charge. The printed version costs $ 11.95 plus tax. Go to Amazon.com and search for “Our Parkinson’s disease Instruction Manual”.
Authors are fellow Villagers Edmund Smith and Jane Masterson. They have 25-years of experience with Parkinson’s disease and are frequent speakers in The Villages and other places where they give a seminar entitled “Ideas for Living Well with Parkinson’s Disease”.
The book covers the following subjects in 24-chapters: How to get great medical care, Learning from others, Exercise, Drugs, Electronic gadgets, Tricks to unfreeze, Speaking loudly and clearly, Making the home PD friendly, The bathroom, The bedroom, Urinary incontinence, Keeping the caregiver healthy, Assist devices, Increasing your mobility, Lift assist, Preparing for a visit to the hospital, Inpatient rehabilitation, Driving, Flying, Vacationing, Parkinson’s and pets. The book includes thirty-five photographs and twenty-five Internet links.
I thought this looked very cool. So thought I’d share it with you who might have hand tremors which make using the computer difficult.
Go steady with your mouse again! The SteadyMouse Project
SteadyMouse is assistive software, designed from the ground up to be your fierce ally against Essential Tremor and the variants that often accompany Parkinson’s disease and Multiple Sclerosis
By detecting and removing shaking motion before it reaches your cursor, and by blocking accidental clicks, the entire mouse experience goes from a chaotic battle to an enjoyable reality.
I haven’t used this personally, but it was shared with me, so I thought I’d pass it on.
I know there is a difference between Hemp (OK) and Marajuana (frowned on). I felt I should include this in my index of alternative therapys
A gentleman from Phoenix wrote this about his wife and the hemp product that gives her comfort:
“After much research, she stays away from analgesics(Pain Killers) because of stomach irritation and side affects. She only takes Greenforia Full Spectrum 1000mg CBD Oil 3x a day. When she feels a little anxious or has neck or shoulder pain in the evenings. 10 drops per dose (20mg of CBD) does wanders. Not only does it help with pain and anxiety, she has great sleep. She also uses the Greenforia 3in1 Topical CBD Ointment 300mg on painful and sore areas. These products are all natural and have been third party tested for quality. I wish you the same results my wife receives with this products. They are easy to buy online and the best thing, they are very affordable. Their web site (greenforia.com) even has a resource page that has medical articles on specific diseases. Very helpful.”
I went to the website gfeenforia.com and scrolled down to the bottom of the Home page.. And found the two short write ups very informative.
The secret sauce and Clinically proven