Thoughts on the Covid Vaccine

I have come full circle on the issue of vaccinations.

When our children were young, we were blessed and privileged to have an MD pediatrician who avoided antibiotics whenever possible and prescribed homeopathic remedies for ear infections. He made sure the hospital did NOT give the routine vaccinations before our youngest left the NICU at age 2 months because he wanted to talk with us first. We discussed each vaccine before deciding whether to give it. We did some, but not all, when they were children. I understand the idea of letting our bodies fight childhood illnesses and the strengthening that occurs when we allow this to happen – with the support of a doctor who monitors our health closely. Working with health organically is certainly the ideal.

However, our world is far from ideal. I realize just how privileged we were and how few people have the opportunity and support we did.

Awhile back, I had a long conversation with a friend from London. He had been born and raised in poverty in Ireland. They were, in fact, neighbors of the McCourt family (Angela’s Ashes). Mikka spoke about all the children who died from the “normal” childhood illnesses in his community; the empty seats in the classrooms, the visits to homes to kneel and pray by their friends’ open coffins. Mikka was angry about the “anti-vaxxers” because they didn’t understand what it was like before vaccines.

I chose to get the Covid vaccine. I also got a flu vaccine this year.

Pharmaceutical companies have a bad rap, for many reasons. They have a lot of work to do to earn people’s trust. I’ve had the opportunity to talk with Pharmaceutical executives and tell them as much. That said, there is so much they have done that has been truly helpful. That a drug company would price gouge a drug like insulin is unconscionable, but it doesn’t mean insulin isn’t an amazing drug. I have Parkinson’s disease/Dopamine Responsive Dystonia. I take a miracle drug (carbidopa/levadopa) that allows me to continue to walk, talk, drive – to do what I want to do. Other therapies, when available and affordable, can be very helpful, but cannot take the place of my meds. Believe me, I’ve tried.

There are changes that need to happen in health care. It needs to become more of CARE for our HEALTH than just treating illnesses, but you might be surprised to hear how many people within the health system are working toward these changes. I had the wonderful opportunity to learn about this when I did some work with PCORI (Patient Centered Outcomes Research Institute) some years ago. I was a part of conversations with doctors, social workers, teachers, scientists, and clergy. I heard about programs all over the country which are creating health care communities. I heard how PCORI insists that clinical study goals are goals set by patients, not clinicians, before applications can be approved for funding… and more… lots more.

I chose to get the Covid vaccine. I chose it at this time because I feel it is the best chance we have to keep our family safe and the best way to get Covid under control.

For those who choose not to get the vaccine, I ask you to do two things:

1) If you must go out around people, wear a mask , even if you don’t have symptoms. Definitely stay home if you have any symptoms of any illness! Be responsible for your decisions and keep people safe, people such as the two in our household who are immunocompromised. How many people are out there with compromised immune systems who cannot take off work, cannot avoid being around people, and cannot afford alternative health care?

2) Recognize you are coming from a place of privilege and your decision is a luxury few people in the world today can afford. Ironically, your ability to easily get a vaccine is also a privilege.

Terri Reinhart

https://www.npr.org/sections/codeswitch/2013/08/26/215761377/a-history-of-snake-oil-salesmen

https://exploreim.ucla.edu/research/researching-integrative-medicine-challenges-and-innovations/

https://pcori.org

Finding a Neurologist - third time's the charm?

Living in a large metropolitan city with all-you-could-ever-ask-for-and-then-some medical services is privilege. It doesn’t necessarily mean you can take advantage of those services, even if you want to or need to, but they are there. Living outside a large metropolitan city often means you take what you can get.

There is one movement disorder clinic in all of Western Massachusetts and they aren’t connected with my chosen health plan. So…. finding a neurologist I would be comfortable with has been an adventure.

1st doc - was a headache specialist. He had obviously looked up information about Parkinson’s before I came in, because when I complained about fatigue, he said fatigue was not a symptom of Parkinson’s and (shuffling through his papers and glancing at his computer screen), if it was a major symptom, he would have written it down. I lasted two visits. On the second one, he smiled sweetly at me and, having dictated into his computer (my medical record) the words “mild symptoms”, he let me know that “as we get older, we don’t have as much energy as we used to”. I fired him.

2nd doc - the one I will name - Dr. Armand Alliotta told me right off he wasn’t a movement disorder specialist, but if we got stuck and needed more help, he could send me to Boston. Dr. Alliotta listened, he chatted, he put me at ease. I was thrilled to find him and didn’t care if he wasn’t a Parkinson’s specialist! He treated me as a person, a fellow adult person, and made it clear we would be working together. Instead of being patronizing, he shook my hand. It was like being welcomed as a peer. Then he retired.

At my last visit to Dr. Aliotta, he referred me to the movement disorder doc in Springfield. I guessed that since I’d been through two neurologists already, going outside the regular referral zone must be permitted. After all, he’d been ready to send me to Boston!

3rd doc - movement disorder clinic - This clinic reminded me, in some ways, of the large clinic at Anschutz in Denver. It was busy, people were moving quickly, and everything seemed ultra professional. I saw the nurse practitioner. I often prefer the nurse practitioners because they seem to have more time to spend with patients. Talking with her, answering her questions, I was very aware this was definitely a place that understands Parkinson’s disease and dystonia. At some point, she brought the doctor in and introduced me to her. The doctor seemed quite aloof, but then, I don’t know her at all yet.

I thought things went well, but there was one hiccup. A few days later, I went to pick up a prescription (not related to PD) and the pharmacy advised me i had three more prescriptions ready to pick up. Huh? Seems the nurse practioner and doctor decided to prescribe some meds and sort of forgot to talk to me about it. I went home in a huff and put in a call. To her credit, the NP listened and listened.

The essence of what I told her (and some of what I wanted to tell her) is this:

I do not expect you to solve all my health issues and eliminate all my symptoms. I do not expect you to take away all my pain. When I tell you what my symptoms are, it is for your knowledge.

If there are symptoms I want to have addressed, I will let you know. Then it is your job to let me know what the options are for treatment, including no treatment. I also expect you to honestly let me know what the effects of medications can be, whether they are intended effects or the non-marketable kind.

When I come in to the office, my speech may slur sometimes. I may not be terribly coordinated. I may need to ask you to repeat what you say, especially as we wear masks. I may ask questions that seem obvious to you. However, as this is a movement disorder clinic, I would expect you to understand that these symptoms do not give you any indication of my intelligence. Make sure you treat me in accordance with this understanding.

I’m a new patient to you, but I was diagnosed 14 years ago. I am not new on this journey.

Medications are always a concern for me. My system is ultra sensitive to drugs. Believe me. Please! If I say I cannot take a certain drug, do not assume I was overusing it and prescribe it anyway. If I say I cannot take it, I WILL NOT take it. When I ask about possible effects of a drug, do not brush off this concern. Yes, I know there is only a small chance of some of these severe reactions, but when they happen, it’s not just a small part of me that’s affected. It’s all of me. If I’m not willing to risk being one of the 5 % of people who have a reaction, support my decision.

You are the expert in regards to the scientific stuff.

I am the expert in regards to my own being - physical, mental, emotional, spiritual. I am also part of a family. I am the one who understands that my needs have to be balanced with the needs of my family. I will not use a medication that could interfere with my ability to drive a car.

Thank you for listening. Thank you for apologizing about the medications. I really do not want to look for another neurologist and start yet again.

**

And yes, I am still privileged. I live in an area where there’s a neurologist - more than one, in fact. There are a lot of rural areas where there aren’t any specialists close by. I am grateful I had amazing neurologists in Denver who knew to work with me. My other choice here would be to find a doctor in Boston to see once or twice a year, then have my PCP follow up in the family medicine clinic. That would be okay, too. For now, I’m confident I was able to communicate my concerns and needs with the nurse practitioner.

It’s a work in progress.

Adventures in Grocery Shopping

Amazingly, there were handicap parking spaces available, right in front of Costco and right before Costco opened for senior hour. I probably should have been suspicious, but then, it’s been awhile since I’ve gone shopping. Chris usually does the shopping and he’s more in tune with what we need, rather than what sounds good in the moment. I tend to shop like my dad.. more so after spending a number of years shopping with him. I was good today. I did not buy the extra large two pack of Nutella.

After I parked, I noticed there was a line of people with baskets, standing in socially acceptable blocks of space. Ah. Though I’d gotten up too early and wasn’t 100% at the top of my game, I realized I’d have to get in the line. Fine. The line snaked around the corner of the building. It’s okay, I thought. It’s early. I walk better in the morning. Cruising around the corner, I gasped to see the line all the way down and around the next corner. Okay, I thought, I’m here already. I may as get in line and do this.

I parked the car at 8:10. I got to the end of the line at 8:25. Cruising may have been a bit of an exaggeration. At 8:31, a masked man came down the line, yelling to everyone to make sure they have their Costco cards out to be checked at the door. Not doing so would hold up the line.

At 8:35, I was at the front door, showed my card to the nice young person outside the door, then put it in my purse. Another 5 steps and a young woman asked to see my card. Oops. I guess the other guy was just directing traffic. I fumbled in my purse for the next minute or two and finally pulled out the card again. Everyone was glaring at me. I took my cart and went down the first aisle I could.

From there on out, I lost track of time. It is with great excitement I can announce - they had toilet paper! I got a 30 roll pack of Charmin. Charmin! Not scratchy cheap generic 1 ply, but TP for royalty! I would have jumped for joy, but having used most of my energy reserves waiting in line, I decided to save what remained to (hopefully) keep the brain running on all synapses. It worked for awhile.

I don’t do the shopping anymore because I wimp out before I get to the things we really need. I’d come home with Nutella and chocolate chips, but no fresh fruits and vegetables. Chris kindly decided to take over so we’d live long and prosper.

I did not come home with Nutella today.

So why did I go to Costco by myself today? Because I was awake and up and had my morning energy and the senior hour was from 8:30 to 9:30 and I wanted to do it.

To my credit, I came home with asparagus, oranges, chicken, cheese, strawberries, potatoes… all in large Costco size quantities. I also came home with 4 lbs of powdered sugar, 4 1/2 lbs of chocolate chips, and two large jars of pickles (one dill, one sweet and spicy). Then I wore out. I had a list of everything else we needed, but the legs said no and the brain said huh? and I figured maybe I’d best get home before I passed anything shiny to pick up and bring to our nest. Animal instincts were about all I had left. I also desperately needed to pee.

So, back to the car, took the mask off and took a deep breath of fresh air. Despite having an itch start in my left eye and travel down to my nose, I did not touch my face. By the time I arrived home, the itch had become a twitch and I abandoned the car for Chris and Patrick to unload, taking myself in for cleaning.

Chris said I did well, which I think means he’d let me do it again. Nice. He didn’t even say anything about the chocolate chips or the 4 lbs of powdered sugar. If we run out of meat and there are shortages, we’ll just have to live on chocolate chip cookies. And pickles.

Maybe next time I’ll have enough energy to find the spaghetti noodles and jam and whatever else was on the list. Maybe we’ll just order them from the regular supermarket.

I wonder if they have Nutella?

Off to Boston

I'm off to Boston next week, on the bus, by myself. Partly to check out the dental school clinic and have a free dental exam and partly to reassert my ability to be independent. So, I'm going for the whole day and will be able to do a little sight seeing before my late afternoon appointment. Maybe stop at a couple of the old cemeteries that are close by....? Maybe the Boston Tea Party Museum...?

Reality check - it's supposed to be 20 degrees. I may be hanging out at South Station for awhile.

My journal has been suffering from severe neglect over the last year and, with a few hours to sit, drink tea, and people watch, maybe I can catch up on a little writing. I’ll bring my handy dandy neo writer with me so I won’t get distracted by the internet. The Neo runs on 2 AA batteries which can last a year or more and it’s practically indestructible. South Station looks beautiful - like Union Station in Denver. Good place to people watch.

There’s a lot to write about, even if I don’t count the half dozen articles I’ve started and are now languishing in the drafts folder. We’ve been living in New England for almost an entire year now. There’s got to be a few stories in there. There’s one in particular I want to share which is about a unique exercise program for people with Parkinson’s. I visited once and I actually did some boxing and I actually enjoyed it. Me. I didn’t expect to, but then I didn’t know I’d be boxing to music.

After the visit, I came home with the email address of one participant, who invited me to her house for tea, along with another woman whose husband is in the program. From them, I learned where the best movement disorder specialists are (Boston and Hartford), where there are other exercise programs, how to find scholarship grants to help pay for exercise programs, and I learned that New Englanders aren’t as standoffish as I’d always heard.

I’ve actually met a number of lovely women around my age. Many of them are named Karen. Considering the challenge I have with remembering names, this could be a good thing. I never forget my friends. Who THEY are is so much more than just a name.

I could also follow the lead of my niece who, at the age of 3 didn’t realize her preschool classmates came pre-named. When I asked her what her friends’ names were, she replied, “I don’t know. I haven’t named them yet. I think I’ll call one Cinderella.”

Hey friends, guess what? If I start having a lot of trouble remembering names as I get older, y’all are gonna be Karen.

Humditty Day

Long before we moved to New England, Chris introduced me to “Bert and I and other stories from Down East”. Created and told by Yale University students Marshall Dodge and Robert Bryan in the 1950’s, the stories recount the adventures of two Maine fishermen and woodsmen. “Bert and I”, in turn, introduced us to Down East talk including one phrase which has become a favorite. We’ve been in Massachusetts for 6 months now so we know what hot and humid days are like. Fortunately, we haven’t had too many days when walking outside feels like walking into a sauna, but when we do, the enjoyable part of it is being able to say slowly, “the air is laden with humditty”.

I’m not sure anyone besides “Bert and I” say humditty. It just has a nice ring to it, don’t you think? It makes me think of Pooh bear and can’t you just hear Pooh singing about a humditty day? Sounds much better than going on about the high humidity and heat wave and all. Of course, the way they say it in the stories does not sound at all like the cheery little verses Pooh would sing. It’s much more of an Eeyore tone.

It’s hot in Denver, too, though the humidity is down around 19%. Las Vegas is even dryer at 9%. You don’t sweat in Las Vegas. You bake. I thought I was adjusting well to the climate here. It wasn’t affecting me nearly as I’d expected. Hey, I thought, this is easy. No problem. I can dance and sing a little song about our humditty days…

…until two days ago.

On Saturday and Sunday, the temperature was in the mid-90’s and the humditty was high, too. The dew point temperature was high as well. I don’t understand it enough to explain, but I found a decent explanation online. It tells why we can get trapped in the hot sticky humid weather pattern. It might help a little bit to know what’s going on so we know exactly why we’re so miserable.

Cue Eeyore: “The air is laden with humditty. Don’t blame me. Nobody listens to me anyway.” Okay, that’s not a direct quote, but it could have been.

Here is the weather link: https://www.mlive.com/weather/2019/07/too-hot-to-rain-weather-coming-heres-why-that-happens.html

Fortunately, the weather is much nicer today. It’s cloudy, rainy, and cooler. We sat on the front porch and ate lunch. Today is a nice humditty day and I can imagine Pooh bear stepping in puddles as he sings.

“That’s right,” said Eeyore, “Sing. Umty-tiddly, humditty-doo. Here we go gathering Nuts and May. Enjoy yourself.”

“I am,” said Pooh.

New York City - Pride Weekend in Rush Hour

There were Micky Mouses and Minnie Mouses all over the place. I was wondering what brought them all to Time’s Square, which shows beyond a doubt it was our first time there. I made the expected and perfectly understandable mistake of taking a photo of them. Just that fast, we were surrounded. They offered to pose with us for a photo. Sure, why not? What came next, I should have expected: “Tip? Tip? Tip?” over and over until each one of them has a dollar or two. I wasn’t sure what would have happened had I not been able to tip them. After that, I was very careful about taking photos.

New York City is …. interesting… especially in the area around Time’s Square and Broadway. It’s glitzy and greasy at the same time. It’s exciting, fast, crowded, loud, and not very gracious…and then someone does something gracious to remind us there are wonderful people everywhere. An older man noticed my daughter and I looking lost. He stopped and quietly took his time giving us directions and made sure we understood. As he walked away, I noticed the stiff gait and lack of arm swing. It’s just possible we may have been helped by someone else with Parkinson’s.

To be fair, I don’t think people in New York are NOT gracious, they just seem to be in a hurry all the time.

Going to the Pride Parade in New York City on the 50th Anniversary of Stonewall sounded so cool, and it was, sort of. A LOT of people were there for the parade. Nice to see so many people celebrating Pride and showing their support, but there were so many people that the city had closed off many streets and limited pedestrians to specific walkways. This meant walking down 5th Avenue was a little like trying to drive to and through the Lincoln tunnel on Friday at rush hour on a festival weekend. It was stop and go all the way.

We were often directed to places which were not accessible for my scooter. Several times, I needed help to lift the scooter on or off a curb. Who helped? Women! In each case, it was a woman who came to our rescue. Attempting to find a place to see was a lost cause for me, so I parked and told Emma to try to get as close as she could. I took out my knitting. Might as well make use of the time. The energy was so fun and positive and alive, I was okay with not seeing the parade. I heard it and felt the energy.

the horse sharing grain with the pigeons

The day before the parade, we experienced a true NYC moment. Standing by the entrance to Central Park, a young man driving a horse and buggy made his way down the road followed by an impatient driver in an SUV who honked continuously at them. Once the horse and buggy were out of the way, but before the SUV driver could hit the gas pedal, a man stood right in front of the SUV and started lecturing the driver. I don’t know what was said, but judging by the gestures, it was lively.

The best moments are always those with people we know. On Friday evening, we square danced with a group which included several of our friends from Denver. Saturday, we were treated to a wonderful lunch at the home of my cousin Daniel and his family, and Saturday evening, we had dinner and explored the city with two of Emma’s friends from college.

Central Park is also beautiful and a wonderful gift of nature in the middle of all the concrete, steel, and glass. We saw fireflies in Central Park - and squirrels and pigeons. There are trees and grass and I remembered the scene from “The Fisher King” when Jeff Bridges and Robin Williams lay on the grass naked.

I’m glad to be back home and, if this doesn’t sound like the most enthusiastic review of the big city, it might be because I came home with an infected tooth. This, too, shall pass.

We learned a lot over the weekend, not the least of which was that we can successfully navigate the city. I’m not sure how soon I want to go back, but I think I will some day. We can do this!

I Believe You

Really? I wanted to say. Are you sure you want to believe me? You don’t think I’m a hypochondriac who is looking for lots of pain medication, despite the fact I’ve rarely taken any and, when it’s suggested, I tend to panic?

Really? I wanted to say. You trust my assessment of my own body when I say a certain pain is not muscle pain? You trust me? You’re not going to insist I go for weeks of physical therapy to prove it’s not muscle pain?

Really? I wanted to say. You believe me when I say I am super sensitive to medications? You’re not going to insist that a particular drug is safe for me and either scoff at me when I refuse to try it (yes, I know your grandmother took it without problem. I am not your grandmother) or, if I do, look at me with your face turning pale while I’m having a severe reaction and say you didn’t know I was THAT sensitive?

Thank you.

Thank you for explaining what could be causing the pain I have (it’s not awful, just there, so nobody worry) and explaining to me what other symptoms I need to be aware of and when to come back in and get things checked.

Thank you for believing me.

***

I finally got through all the ins, outs, ups, downs, twists, and turns of getting medical insurance in a new state and I had my first appointment this morning. The clinic is 25 minutes from our house, which would have been nothing in Denver, but evokes wonder here. A friend had told me about the excellent care this clinic offers and, well, I don’t care about driving a little extra ways to have excellent care.

I don’t mind the drive, especially as it curves through the Holyoke Mountain Range. The mountains here are not nearly as spectacular as the Rockies, but these gentler mountains are far more accessible, especially to this 61 year old who didn’t like driving the steep mountain roads. Here, I feel like I’m almost living in the mountains. A 10 minute drive to the northwest and we’re in the Holyoke Range. A 10 minute walk to the west and we’re next to the Connecticut River. Looking out our 2nd floor window to the east, we have seen deer. Looking out our front window on trash day, we saw a groundhog.

I digress. I just picked up my prescription at our local Big Y grocery store - a typical big grocery like Safeway or King Soopers. I did not have to present my insurance card or explain how it would be covered even though I technically don’t have prescription drug coverage until July 1st. The pharmacy knew all that already. The cost was exactly was I was expecting.

I loved my neurologist in Denver, Dr. Lynsee Hudson Lang. She was another doctor who believed me. My PCP doc at Kaiser did not believe me and, at the end, was treating me as though I was somewhat senile and couldn’t be trusted to have any opinions on my own health. After this PCP left, I had one visit with another new doctor who was patronizing and insulting and…. well, you get the picture. I decided unless I was in an acute health crisis, there was no way I’d go back. Not a good place to be.

I believe our move to Massachusetts was really the right move for us, for many reasons.

Some Thoughts on Awareness Month

One step out of the store and I knew I was in trouble. I had no idea where I had parked my car. I’m not really getting forgetful, I just had a lot on my mind. I had just come from talking with a social worker and, finally, was feeling reassured about my health insurance. Maybe all those Humpty Dumpty pieces will go back together again, after all.

At that moment, however, knowing this wasn’t helping me to find my car. As I stood there, looking puzzled, a man walked up and looked at me. Was it so obvious I was lost? I guess so. I confessed. I had forgotten where I’d parked. I felt silly, but the man just smiled and asked what kind of car it was. I blanked out completely. After a pause, I pointed to one closest to me and said, “It’s shaped like this one, but it’s dark red.” He nodded, glanced over and said, “That Nissan Rogue over there?” YES! That was it!

It wasn’t until he was walking away that I saw the telltale stiff walking, no arm swing, and tremor in his right hand. I’d had an encounter with another person with PD and neither of us were aware of it, at least not while we were talking together.

I recently received a lovely honor for my blog. It is listed as one of the Top Ten Real Life Parkinson’s Blogs. What I love best is the description:

“Terri Reinhart’s blog, Studio Foxhoven, is far from ‘a blog about Parkinson’s disease’. Rather, it is a frank, honest, and often humorous journal of any and every aspect of her life that she deems worthy of writing about. It just so happens that some of those aspects are, in part, shaped by Parkinson’s, with which she was diagnosed in 2007. “ from My Therapy App blog .

Over the years, I find myself writing less about Parkinson’s and more about life. It works for me. It’s not so interesting to write just about my Parkinson’s anymore. My PD and I have gotten to know each other well enough, it’s old hat. There are a lot of new things in my life right now and I don’t want to limit myself in what I write. I’m grateful the award site appreciated my attitude, too.

Have you ever heard of Sjögren’s Syndrome? Or Relapsing Polychondritis? Or Dandy-Walker Syndrome? How about Mast Cell Activation Disorder? Did you know April is also Sjögren’s Syndrome Awareness Month? These are rare disorders, but I happen to know someone with each of these challenges. I hope you are curious enough to look them up.

I know we need to spread awareness of Parkinson’s disease. We are somewhat privileged, though, and it’s important to remember we have some very big name people helping our cause: Michael J Fox, Billy Connolly, Alan Alda, Linda Ronstadt, Neal Diamond. .. to name a few. You might have heard about Sjögren’s Syndrome from tennis champion, Venus Williams, who also has this diagnosis. The other syndromes aren’t connected with anyone famous, so unless you’ve known someone personally with one of these, this is probably the first time you’ve heard about them.

April is also National Mental Health Month, National Autism Awareness Month, Irritable Bowel Syndrome Awareness Month, Women’s Health Care Month, Stress Awareness Month … and many more like National Poetry Month, National Fair Housing Month, and National Soft Pretzel Month. It’s also National Humor Month.

With so many many things to be aware of, it’s difficult to see how anyone can remember them all. I’ve looked ahead to May and I’m overwhelmed already! May is almost here and brings with it National Correct Your Posture Month. National Stroke Awareness Month, and National Asparagus Month. There’s one nice one arriving: National Date your Mate Month. I’m putting it on the calendar.

It’s not May yet and there’s lots I need to be aware of this month…starting with Where Did I Park My Car. Is there anyone famous out there who has this challenge?