Not for Everyone

A sweet person on a group chat asked a question: “How do you make the transition to a nursing home?

I personally don’t think I need to worry about a nursing home to the end of my life, but things do happen. My mother promised her mother she would never put her into a nursing home… But after my mother had a disabling stroke, and she was total care for my father, he had no choice but to put his mother-in-law, Lola into a home. It was the best thing that could have happened, for Lola. She met other ladies she had things incommon with. they would sit together and knit, they watched the same soap operas. She was as happy as a duck in a puddle.

So, with that knowledge…I wanted to share some thoughts gleaned from the chat: and advice that I have put in bold.

At some point your relatives may want to settle you into a nursing home. Here are some of my ideas based on shared experiences. Can you think of more ideas?
What are the advantages of moving into a nursing home?
1. You won’t have to cook your own meals any more. Granted, institutional food is not as healthy or natural as what you might fix for yourself, but normally the meals & snacks are created by professional dietician and are balanced & varied.
2. You won’t have to clean house.
3. You won’t have to do laundry.
4. You will have physical therapy available.
5. You will have activities available.
6. You won’t have to remember when to take your meds.
This may seem like not worth the price of giving up your freedom, but in many ways it will give you more freedom to write, color, listen to music, get on the internet, look out the window, and be yourself.
Before you go, be sure to pack your activities
Additionally, be sure to mark your name on everything clearly with a permanent or laundry marker. Get a silver or gold marker to mark black things. Carve your name in some things with a knife tip, engraving tool or drimel, before you mark it; cellphone, chargers, laptop.
1. Your cellphone & charger.
2. Your laptop. (Check to make sure you will have internet access.)
3. Your coloring books & colors.
4. Your music & something to play it on – headphones or earbuds are best.
5. Address &/or phone books. If you have time, program them into the contacts in your smart phone or take a picture & save it on your laptop. Be sure to save it on Cloud or Google Drive so you will still have it if something happens to your device.
6. A warm coat, hat, muffler (scarf) & gloves in case you get to (or need to) go out in colder weather.
7. Lighter outer wear including a raincoat & rain hat for cool but not cold weather.
8. A week’s worth of warm clothes, spring or fall clothes, and summer clothes.
9. PJ’s or nightgown 3 or 3 & bathrobe & slippers – 2 each.
10. A good grabber for reaching things.
11. Paper & pens & pencils & pencil sharpener.
12. A small safe, hopefully with a setable combination lock, not a key. Set the combination to a number you can easily remember.
Things you will Not need:
1. Furniture
2. Knick knacks
These may be hard for you to leave someday. Begin to eliminate what you can,. It helps to have pictures of favorite items. It also helps to bequeath them to a descendant who will value them. If not, sell them on Craig’s list & at least you will have the money for them.
Speaking of money, nursing homes are expensive. They often take the money from the sale of your home or property, so put the property in a relative’s name first and set up a bank account with a relative that does not have your name on it.
Pets – many nursing homes will allow 1 pet if you feed it and take care of letting it out to do its job yourself.

Oven wisdom

It seems only prudent of me to turn the responsability of putting items in or out of the oven to someone else who has better balance… since I do most of my falling when I lean over. Like last Wednesday, I leaned over to comfort our shepherd, lab mix by putting his ‘Thunder shirt’ on him, and found myself sitting on our closet floor.

I enjoyed reading this post from the AdjunctWizard’s Blog

My Own Reaction Surprises Me by AdjunctWizard. She wants to do it herself. We had a tough for me conversation this morning about issues we trip over as travel the annoying twisty road of Parkinson. It started out as, you know I can still do stuff.This was a response to me speculating about learning to make my own piecrust instead of buying a commercial piecrust. I will take the path of least resistance every time I can. There are enough things to staff, organize and worry about. If someone has already made the piecrust, I am good with that.I buy salad in a bag too. Dump and go. Chop a tomato and it is salad. Dressing is in the fridge.She remarked that she could make a pie and that she knew how to make piecrust. Naturally I forgot about what I have been attempting to practice on a daily basis. I started to enumerate the negatives. I caught myself before I got too far into the ditch along side this partially paved macadam thoroughfare.It is Lenten season. Instead of chasing some carryout fish fry from our parish we had the makings of tuna casserole. An old time favorite from the Dinner for Two Cookbook by Betty Crocker (You can still find one if you poke around.) Remember Betty Crocker? She is my go to for a lot of things. That seemed like an easy thing and she likes it. I said why don’t you make the tuna casserole and we can have the leftover pie for dessert.She agreed.We attended a discussion in the afternoon about newer drugs used to treat Parkinson’s disease and when they are used and how they worked. When we returned I attended to the laundry and then busied myself with work for my job at our local community college where I teach part time.She announced she was going to start on the tuna casserole. It was three pm. I spent the next hour listening and worrying and occasionally sneaking a peek into the kitchen twenty feet away. After a few misfires on her part she got started with minor aid from me. She put all the ingredients into a Corning ware bowl and mixed it. She used to know how to start the oven but that knowledge and skill has been lost to Parkinson. I told her which buttons to push and it clicked on.I went back to work on my project but gave it up for a bit when the oven played its happy tune to announce it was up to temperature and waiting. I went in for the oven placement of the casserole. She put it in but I worried while watching. (Maybe I am a worry wart.)Scary activity for someone not steady on her feet.I suppose there is a good mechanical engineering reason for oven doors to open as they do. I have not seen one built so that door opens any other way but down. A standard range winds up with the door about a foot off the floor so that the person reaches down into the oven from three feet away. It looks to me like a disaster waiting to occur. I hovered nearby as she put the casserole into the oven and then put on oven mits to get something from the fridge.We ate about an hour ahead of when we usually eat but time and calendar and sunrise and sunset seem to have less meaning for her. It is time for us to start eating dinner at four pm like the rest of the old folks.

No Silver Bullet

As I have previously indicated, I belong to a forum where people with PD ask questions and share experiences. Recently Eliza-Jane asked:

‘I have lost my voice to PD. I saw a ENT Specialist who advised me that my vocal chords weren’t closing properly. She suggested having a filler injected. Has anyone had this done?’

In reviewing the responses, I followed the rabbit hole to discover a youtube group…. No Silver Bullet 4 PD And this very informative Video. I learned quite a bit from viewing it.

Always striving to have wisdom to know how to implement the knowkledge I obtain.

Sue

Advocate for yourself

I cry too easily, I can’t read anything aloud, with even a hint of sadness 0r stress or I start to cry and then I can’t talk… I am a silent cryer. When I attend a reception line at weddings, I cry. When we would watch a tv show as a family, the children delighted in catching me crying over silly things, and reminded me that it wasn’t real. I told them my bladder was simply too close to my tear ducts. I have never been depressed. I am the eternal optomist.

I appreciated the sentiments expressed by SilentEchoes in a forum I follow: She shared…..

“Pathologic tearfulness (emotional incontinence) is a disorder of emotional expression rather than a primary disturbance of feelings.”

“It’s not you – it’s your brain injury. I cry easy – too easy. I often lose credibility with the doctor when it happens to me. The imbalance of power in the exam room is very real.”

“A neurologist told me that the fact I was crying in his office was evidence of mental illness. When we left my husband said, we’re never going back to that a$$h*le. When you understand what is going on in your brain, you’re better equipped to advocate for yourself. This is much harder to do in the early phase when you’re baffled by the weird stuff you’re experiencing.”

“Gaslighting and psychological abuse is never okay; and especially not in the context of the medical setting.”

“Emotional incontinence is not associated with depression, impulsiveness, memory impairment, or executive dysfunction.”

“Pathologic tearfulness is not a manifestation of psychiatric illness, it reflects abnormalities in brain networks that control emotion regulation beyond the hippocampus. The condition may be present in other neurologic disorders, this article provides novel insights into the neural basis of affective control and its dysfunction in disease.”

https://n.neurology.org/content/94/12/e1320

“The more you know the better you can advocate for yourself.”

Make some noise

I found this article from ‘Parkinson’s News Today’ insightful… I’m appreciative to the PD Support group . They help me project my voice.

patients speak less | Parkinson's News Today | illustration of woman speaking with megaphone
Parkinson’s Patients Speak 60% Less Than Healthy Peers

“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 VoiceThe 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

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

The Lighthouse

I looked at the newsletter put out by the Parkinson’s Support Group , and I was curious: so I called the Caregive Resource Center. Gave her my phone number and email address. Then the lady, Amy, called to provide the address where the Lighthouse Inn respite bnb retreat is located. We decided to attend. And enjoyed two full hours of live bluegrass music by the Sandy Back Porch. We were in the shade and seated onchairs on a cement pad. The weather was overcaast, breezy and beautiful. A grill master was grilling up hamburgers and hot dogs. And they took a break and we ate. and saw the large Arts N Craft room, fully stocked with all types of mediums paints, acrilics, fabric, canvas, wood, , things for making decorations, wreathsPrinting pads, ink pads, Stamps & Stensils,ribbons and beads. We met the Ocupatinol Therapist who will be seting up the exercize and therapy room. There were a ton of and large variety of equipment, like exercise bikes, leg lifts, arm press, etc… to address any anticipated Parkinsons symptoms. All brand new.

Amy’s father suffered from Parkinson’s. and he died this past year. Amy and her mother got the idea to provide a place where caregivers can take their partner and leave them there for 5 hours, Monday – Friday so the caregiver can have respite and know their loved one is being well cared for, having experience in the arts & Crafts, exercise/therapy, Music (AND another area I can’t come up with immediately) I do remenber they have Jigsaw puzzles that clients can work on puting together which is good for brain function. And they will have a bathroom and a cafe in the large building where the day time clients will, participate in art, music and exercise, etc,,

Then Amy’s mother died this year, too, but Amy has decided to continue on. She has very qualified staff, and the Lighthouse Inn currently have their first two clients. If you happen to live near The Villages you might want to check them out. So if your loved one’s disease progresses to where you don’t feel safe to leave them unattended, you can have an option for respite care.

I was only in the Large Inn main house, but I had to go thru a bedroom and a wheelchair assesssible shower to get to the potty. There were photos on their blog site that I found showing their little dogs, snuggling with guests.

Rather than charge us for providing great entertainment and a meal, they gave us the opportunuty to donate to a Parkinson’s fund

They said they have another event planned for November and then they will plan to have other s0ocial get togethers the last Friday of each month Beginning in January.

May be a cartoon of 1 person and text that says 'Inside of everyone There isq lighthouse houSe A place you'an go W'here the the light never goes out A place where the waves Wash away everyHhing And all that is left Is what is HERE to stay'

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!”