Month: November 2021

Service Animals and Decisions

I found this on the PdCure.org site: Services an animal can provide are:

  • emotional support and companionship
  • help maintain a walking rate of speed or gait
  • prevent freezing by pulling gently on the walker
  • pull a wheelchair
  • help promote exercise and daily walks
  • if equipped with a harness (shoulder mounted, not back), can provide stability to prevent falls
  • get help after a fall
  • aid with manual tasks like removal of socks, picking up items, retrieve the morning newspaper, retrieve hard to reach items, open doors or turn on lights

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.

PROCRASTINATOR OR PLANNER? AT THE CROSSROADS

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:

  1. Don’t worry alone. Involve others as you consider options for change.
  2. Support groups can be lifelines at decision crossroads. Every member of the group is an “expert” and can share wisdom and experience.
  3. Gather information. The best decisions are made with facts; not driven by fears, fantasies or misinformation.
  4. Ask for help! You can do anything, but you can’t do everything.
  5. Ask members of your health care team to participate in helping you think about changes. How can the team help the PWP maximize independence, while balancing safety considerations.
  6. Pinpoint the obstacles for making change and then brainstorm solutions.
  7. It’s ok to get “stalled out”; we all need a periodic time out. But then figure out how to get back on track.
  8. Decision making is usually modifiable. Consider the metaphor of using a pencil and eraser in your planning (you probably wouldn’t use a pen to work on a crossword puzzle!)
  9. Don’t let perfect get in the way of good enough. Often a good enough plan is a starting point. Waiting for the perfect plan can be a trap.
  10. Keep humor in your back pocket. Remember these wise words: “He or she who laughs, lasts”. Laughter can be a great coping mechanism.

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

The question was posed…

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

  • I completely agree with the comments above!  I think it is very important for others to understand the variability of PD.  Each person’s journey is different, and for that one person we focus on, the journey for that person is also extremely variable.  One day (or hour!) may be very different from the next.  I choose to consider PD my adventure.  I never quite know what is in store for me.  That can be positive as well as negative; if I am having a bad day, I know that tomorrow may well be wonderful.  The non-motor symptoms give me more trouble than the ones that are visible, so I think I would want someone who does not have PD to believe us when we say we can’t do something on any given day, even if we were able to do that yesterday and may again be able to do that tomorrow.  I am blessed with family members who understand that, making it much easier for me to take each day as it comes. ” Marlene

“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

Encouraging report

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

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.

Assistive Software

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

Steady Mouse

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.

  • Anti-tremor filtering to remove shaking motion
  • Automatic blocking of unintentional mouse clicks
  • A unique Icon Targeting System to snap your cursor to where it was trying to go with the tap of a button
  • An easy global on/off toggle via the Num-Lock key
  • Productivity boosted to orbit

I know

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

Spelunking (Lessons Learned)

On MyParkinsonsTeam MountainjWoman shared this advice!

“So Stop Falling! I have only fallen once in the 11 years I have had P D. When I was teaching spelunking (caving) to junior high school students, I learned an important principle about Not falling (quite important sometimes when caving!) Have 3 points of contact, not just 2. So if you are standing on 2 feet & move 1, that only leaves you 1 to stand on – Crash! But if you are standing on 2 feet plus holding a door frame or a countertop & move 1 foot, that leaves you in a stable position with 1 foot & 1 hand holding you up as you find a good placement for the foot you are moving.”
“I watched my husband relearn how to walk after his slight stroke. He would lean the direction he wanted to go, but not move his feet until he overbalanced, then he would hurry to make his feet quickly keep up with his falling body.”
“Shuffling – 2 problems: 1-The stride is so short that it takes absolutely forever to get from point A to point B
2-You don’t have any clearance when shuffling. The slightest unevenness (a mat, a wrinkle in the carpet) trips us & – Crash!”
“Reteach yourself how to walk – how to lead each step by lifting the knees; the leg is not a stiff, straight block of wood from the hip to the foot. Use all the joints. Pick up your feet & roll through the foot from heel to ball of foot, to tips of toes with each step; proper normal stride length, balancing each step by swinging the opposite arm & by tilting the head toward the foot that is moving forward, how to turn, walk backwards; pivot on the balls on the feet, not the heels; how to regain that sexy hip swing.”
“Bend your knees before & after stepping over something.”
“Do physical & occupational therapy for relearning balance, get homework exercises, & Do Them religiously every day.”
“Orient the balance centers of your brain by touching things as you walk – the back of a couch or chair, the desktop”.
“Dance – moving to music frees up your balance & gait, & it’s Fun!”
“Don’t stand on your own 2 feet – touch the wall, furniture, a grab bar or sit down instead of standing around. The beautiful ballerinas learn their amazing poses at the barre.”
“But decide Not to fall, figure out how “normal” people manage it, & practice, Practice, PRACTICE!”
“It took me over a year, but now I walk & run normally, naturally, without thinking about it.”
“Wouldn’t you rather teach yourself Not to fall?”

Comprehensive Nutrition

  I wanted to tell you about what I am using and the impact it has made in my life.  I had purchased a helmet to protect my head as I had continued to fall.  But I forgot to put it on before going to the hospital to visit a sister who had fallen and injured her back.  As I was stepping from the curb onto the sidewalk, I didn’t get my foot raised quite high enough, causing me to stumble. The thought flashed through my mind..(You didn’t put the helmet on and now you are going to face plant on the cement.)  But miraculously, I was able to move my feet quickly enough that I was enabled to recover my footing.  I’m sure it wasn’t a pretty dance, as several people came to make sure I was ok.  I attributed my rescue to be by the grace of God and the improved comprehensive nutrition of the New Eden product I had begun to consume.            The next week, I was feeling so good, I was working outside and decided to pull a hose around to water an Angel Trumpet Bush… and as I was pulling hard,when the hose snagged on something, it stopped me so suddenly that it caused me to fall backwards.  Thankfully, I had the helmet on, because I hit the cement statue of a child holding a fishing pole, so hard that I dislodged the pedestal from the soil and knocked the child off of the pedestal.  Although my shoulder was sore and where the cement had struck my spine was bruised and swollen,by the third day, the pain was all gone, the swelling had receded and it was as if it had never happened.  Again I thanked the Lord for leading me to this more comprehensive nutrition.          As you probably know, people with Parkinson’s frequently cease to swing their arms as they walk.  Mine would just hang at my side.  But in about the last month I have noticed the swing has returned to my arms when I am going into a store or even around the house or going from house to car.   Again, the only thing I have added to my regime in the last little while is the more comprehensive nutrition.          Also, my  voice has been terribly weak, and I have a friend who is hard of hearing,  When she called me on the phone this week, she said;  “You are speaking louder !  And I noticed that the last time we were together, I could hear you better !”  What can I say, but Thank you for the tool of more comprehensive nutrition. 

I received this letter today from Dr. McDaniel:

“The clinical benefits in Parkinson’s Disease was not  a fluke or an isolated brain function restoration event.  I attach the highest level of evidence based science we have had the research funds to conduct.  It was at the Miller School of Medinine in cooperation  with the Miami Jewish Health Service.  The Jewish facility if the largest retirement in-house operation on the East Coast and has 150 dementia patient beds and an out patient group in early Alzheimer’s disease patients, not ready for being institutionalized. They had done drug company Alzheimer’s research for over 20 years and were experts. All FAILED prior research efforts conducted in the past were designed to determine if a potential drug would SLOW the progression of dementia.   They had never had a patient improve memory and cognition.”

“The idea and intent of our plan to test more comprehensive nutrition met skepticism and cynicism to the point of being insulting and hostile by the investigative team. It was worth more than any earthly value to see and hear their responses to our outcome in 30 pilot patients that the medical school IRB demanded a pilot study be done with all our funds, to show if their was toxicity.  We had no toxicity what so ever with nutrition. But we got a bonus.  There was 69% benefit to memory and cognition restoration, to their astonishment. 46% improved memory and cognition and 23% did not progress. Thus both groups beat any study ever conducted.”

“The CD-14 monocytes with adult stem cell potential increased nearly 400%/ We drew blood on entry and exit a year later and froze the serum.  When the Brain Derived Neuro-Growth Factor assay became available; the BDNGF was elevated in the serum even though it was diluted with the entire blood volume.  We had an objective  mechanism  of action (MOA) for the clinical benefits. The adult stem cells migrated into the brain to replace the degenerated neurons and the BDNGF supports the differentiation of the stem cells to become neuros to increase memory and cognition function.”

“This is why we have had multiple anecdotal reports of benefit in cerebral palsy children and adults, Parkinson’s, strokes, Down’s Syndrome, Fetal Alcohol syndrome, seizures, multiple sclerosis, amyotrophic lateral sclerosis, olivary nucleus dementia, fragile X dementia in boys, brain trauma and retinal blindness.  Just to name a few top incidence conditions.”\  

Dr McDaniel sent me his desk top file  on studies in which brain function was documented to have improved.  I saved them on my computer, but have not included them in this post. Please reach out to me if you would like to see the documented data.