JackieHC
Forum Replies Created
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I am quite certain that my young-onset PD is due to all of the exposure that I’ve had in my childhood through my mid-20s. After reading “Ending Parkinson’s Disease, a prescription for action” by Ray Dorsey, MD, Todd Sherer, PhD, Michael S. Okun, MD, and Bastiaan R. Bloem, MD, PhD [all world-renowned Parkinson’s researchers], I followed the book’s suggestion, wrote it up and sent it to [email protected]. Dr. Dorsey contacted me the next day to ask if they could potentially use my story in their next book. I’m pasting it below. Trichloroethylene exposure and to a lesser degree, glyphosate exposure have both been shown to be associated with the development of PD.
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I grew up in the small (population of less than 4,000) southwestern Minnesota town of Jackson, eight miles from the Iowa border, 80 miles from South Dakota. It’s corn and soybeans country, so I spent many weeks during my teenage summers detasseling corn and “spraying beans.” This meant riding in one of four seats in a “bean buggy” that had been attached to the front of a tractor, where I would sit, armed with a long-nozzled metal squirt-gun with a hose connected to a massive tank of Round-up (glyphosate). My job was to spray the weeds, not the soybean plants. Now, the instructions on the pesticide label state that it should not be sprayed in windy weather, but the farmers have only about a one-month window between when the soybean plants are grown large enough to be distinguished from the weeds and when they have grown so much that the leaves will help to camouflage the weeds. Also, he or she runs the risk that the plants’ stems will be crushed by the massive tractor wheels. So as you have probably already guessed, he or she will take advantage of any June day when it isn’t raining, or so muddy that the tractor will get stuck. June is typically the wettest month in southern Minnesota. It might be a good time to mention that in those days, it took 3 drops of Round-up to kill a weed, but only one drop to kill a soybean plant. I usually stripped down to my bathing suit and denim cut-offs, in order to work on my suntan. Might as well multitask, right? (This was in the 1970s, so we hadn’t heard of sunscreen yet.)
When I’d get home from the fields, my mom would immediately say, “Go take a shower! You reek of chemicals!” It had taken me years to be able to understand how she had been able to tell (smell) that it was me who had come in the front door, since she would be in the kitchen, making supper. No showers for me, though. I preferred baths — long ones (45-60 minutes). Unfortunately, for most of my youth, and long after, Jackson’s municipal water supply — the water that I drank and in which I soaked — was contaminated with trichloroethylene from a defunct circuit board plant.
In September 1988, I led a land-based crew of six on Greenpeace’s “Water for Life” tour. We participated in nonviolent direct actions from St. Louis, Missouri to Memphis, Tennessee as the international environmental group’s research vessel, Beluga, traveled down the Mississippi River. On this particular day, we intended to temporarily block the outfall pipe of the American Bottoms (I swear that I did not make up that name! Go ahead and Google it!) municipal wastewater (sewage) treatment plant to highlight use of the local St. Louis sewer system by toxic polluters — for example, Monsanto, Mallinckrodt Chemical, and others– a practice that occurs nationwide.
We were all outfitted in protective drysuits, but there were only five pairs of rubber boots for six people. As one of two women who were meant only to hold up the Greenpeace banner, well behind the pipe, I said that I would stick with my canvas Keds, which were kinda like loafers (no laces) but with rubber soles.
The men placed the plug with hydraulic jacks. Reporters, who’d been brought to the scene by inflatable boats, shot photos and videos but then wanted to get back to land to file their stories. The four men left, too. Then, the pent-up water pressure blew out the plug. My banner partner and I had no choice; we had to retrieve the plug, lest Greenpeace be accused of littering the river we were there to protect. So we waded into the neon yellow, chemical-smelling effluent, got the plug, and waited for our inflatable. Once in the boat, I became nauseous, tired and developed a headache. I had those symptoms for a week.
Some might say, “You were trespassing. You got what you deserve!” This is my response, “It is true; I was trespassing. But does anyone deserve to be poisoned? And what of the innocent people living downstream, whose communities’ water supplies come from the Mississippi?”
Five years later, while researching pesticides’ health effects for a presentation that I was going to give at a conference in Midland, Michigan, which is home to Dow Chemical Company (another notorious maker of PD-related pesticides, “Agent Orange,” ) I learned that my flu-like symptoms after the American Bottoms action matched exactly with those of acute pesticide poisoning! Ten years after the action (July 1998), I was diagnosed with young-onset Parkinson’s disease (YOPD) at age 34.
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My goal for 2024 is to complete the majority of the filming for our feature-length documentary, “Come Talk To Me,” which we hope to have ready by Summer 2025 for community screenings and film festival showings. It will definitely be submitted to the 2026 World Parkinson’s Congress screening room..
Here is a brief summary of the film:
<font face=”garamond, times new roman, serif”>“Because communication is everything.” </font><font face=”times new roman, serif”>“Come Talk To Me” shows Parkinson’s disease (PD) activist Jackie Christensen, husband Paul, and a diverse group of friends with PD as they reflect on how it has affected their own speech and relationships </font>with family, friends, and healthcare providers, and discuss available assistive communication options, as well as possible barriers to their use.<font face=”Times New Roman, serif”></font>
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I just want to mention that folks who have had deep brain stimulation (DBS) neurostimulators implanted should generally not wear clothing with magnets because the magnets can interfere with the wires, or at least that’s what my programmer told me when I had my bilateral DBS put into my subthalamic nuclei (STN) back in 2006. New DBS technologies have come online since then, but there are also a lot of new wireless gadgets — including mobile phones — that can interfere with DBS. For example, men who used to put their phones in their shirt or jacket breast pocket should probably doing stop that after having DBS.
Mary-Beth, I’d love to see a new forum topic on DBS Do’s and Don’ts for non-medical advice only, of course. Just relating personal experiences. Would you please start one?
My main experience with adaptive-type clothing has been with bras. I have trouble with the closures, front or back.There are a couple of companies that make stretchy bras that provide support but that are not as tight and hard to get on as sports bras. Honeylove.com is the only name I can remember right now.
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I LOVE being called a Parkie (Parky)! It shows that I have a sense of humor about this blasted disease! It’s also the name of the raccoon mascot of the World Parkinson’s Congress (they spell it with the -y ending).Besides, I have enough problems talking already! Saying one less syllable is much easier for me than “PwP”.Besides, when someone uses PWP for the first time, then you have to define it: “person with Parkinson’s.” And please don’t even talk to me about using “Parkinsonian;” that just sounds pretentious! However, if I know that someone finds it disrespectful, I’ll honor their wishes and not use it in their presence.
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I have been told that both of my books, although written some time ago, have been very helpful to many people. In fact, the Minnesota chapter of the American Parkinson’s Disease Association used to give a copy of my 1st book, <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>The First Year—Parkinson’s Disease: An Essential Guide for the Newly Diagnosed, (2005) to every newly diagnosed person who contacted them. The chapter on medications is outdated but I believe that the rest of it holds up well. Likewise, my 2nd book, Life With A Battery-Operated Brain: A Patient’s Guide to Deep Brain Stimulation Surgery for Parkinson’s Disease (2009) has gotten good feedback for its list of questions to ask potential surgeons, and for its thorough list of things to consider before making the decision to undergo DBS.
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I’ve used what my personal trainer son calls a “coaching water bottle.” It’s a 64-oz (half-gallon) plastic bottle with times and motivational sayings at intervals. The recommended daily allowance of water is 8
8-oz glasses of water per day. There are many different models available on Amazon.com and at other retailers. I use one with a built-in straw; a wire brush to clean the straw comes with it. Some also come with carrying straps, since it is a large bottle. You can also use a 32-oz. bottle and just refill it. I had a stainless steel bottle ‘cuz I really loathe plastic, but I didn’t like being unable to see how much I had left to drink.
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My heroes are my husband, Paul, who has been my care partner on this 26+-year journey with PD. He can make me giggle uncontrollably, and I can still do the same to him. A sense of humor is essential for surviving PD.
Karl and Angela Robb are also my PD heroes. Karl was diagnosed with PD when he was 26, more than 30 years ago. He and Angela are the calmest, most centered people I know. Like me, Karl has written 2 books about Parkinson’s. He also has an award-winning blog, A Soft Voice in a Noisy World. Angela is his care partner and co-author of their second book, Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit. We met in the early ’00s when we were all volunteer advocates for the Parkinson’s Action Network in Washington, DC. They were the state coordinators for Virginia, and I had the same role for Minnesota.
Liz Ogren is another PD hero of mine. Liz is a force of nature who started an organization, Pedal and Roll for Parkinson’s several years ago. (The group name has been modified to Pedal, Roll and Stroll for Parkinson’s, or PRSP). Despite having PD, Liz has been getting Parkies on recumbent bicycles, trikes and tandems owned by PRSP at least twice/week during bike season (which here in Minnesota is May-October).
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Joanna, here is the link to the STRONGHER group, https://www.facebook.com/groups/536168113386842
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I’ve had young-onset PD for more than 26 years, so my family and I are dealing with a lot. I’ve been an activist all of my life, so when I see an opportunity to organize, I grab it. It allows me to feel like I’m bringing people together.
For example, I hope that you will join me at 9AM Pacific time/noon Eastern on Wednesday, May 24 to watch Michael J. Fox’s new documentary, “Still,” on Apple+ TV.**
NOTE: There is no mechanism for us to communicate while we watch. We are all committing to begin watching the film at the top of the hour designated for our own time zone. If it is easier for you to watch the movie this weekend and just join for the discussion, that is totally fine. The film is 1 hour, 34 minutes.
We will take a 10-minute break and then reconvene on Google Meet for 90 minutes at 10:45 AM Pacific/11:45 AM Mountain/ 12:45 PM CENTRAL/1:45 PM EASTERN.
To join the meeting on Google Meet, click this link: meet.google.com/mdk-cxdf-mzd
Or open Meet and enter this code: mdk-cxdf-mzd
** If you are not currently an Apple+ TV subscriber, go to https://tv.apple.com. You can sign up for a 7-day free trial.
AGENDA FOR GOOGLE MEET
– Introductions (name, where they live and how long they have had PD)
– Discussion of any existing national resources/programs for people living with Hoehn & Yahr stage 4-5 (advanced stages)
– Brainstorming and discussion of ideas for what we would like to see national PD groups or government agencies do with/for us
– Research opportunities we would like to propose
– Wrap-up. Do we want to meet again?Please RSVP to me ASAP so I will know how many folks will be joining the Google Meet. Thanks!
Jackie Hunt Christensen
Parkinson’s disease and environmental health activist, volunteer, and author -
Hi. I’m a 59-year-old woman. I noticed my first symptoms when I went back to work 7 weeks after our 2nd son was born; I was 32. I was finally diagnosed 3 neurologists/18 months later by being out on Sinemet. I was able to do my job as co-director of the Food and Health program at the Institute for Agriculture and Trade Policy and co-director of Health Care Without Harm: The Campaign for Environmentally Responsible Health Care until I was 40. By that time, my dyskinesia was so bad that I was practically generating my own wind power! My husband told me that sometimes he couldn’t look at me when I was talking because he was afraid he was going to get motion sickness. Neither of my kids has ever known me without PD, but I have always encouraged them to ask questions, and I spoke to their classes at school. A couple of tips on talking to kids about PD: let them know that it is not contagious, nor could your PD have been caused by anything that they did. Also, let them know that you will always have PD (based on the current state of the science). Kids tend to assume that PD is like chicken pox or a cold, illnesses that are short-lived.
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Joanna, I’m so sorry that you haven’t been able to find any support yet. May I ask where you live?
I have a couple of suggestions from when I was still working (I’m 59 and have had young-onset Parkinson’s for 26+ years. I was forced to stop working for pay in 2004 when I was 40, but I’ve had a very rewarding volunteer “career” as a Parkinson’s advocate since then.).
* On facebook, you can join the StrongHer with Parkinson’s group. It’s just for women with PD, and I’d say most are still working. I have found that group to be very informed and supportive.
*if you go to the Parkinson’s Foundation website (parkinson.org/your-area), you can check to see whether they have any evening or weekend support groups in your city.
* If the Parkinson’s Foundation doesn’t have any groups where you live, try the Amerian Parkinson’s Disease Association (apdaparkinson.org).
* If neither of those organizations have existing groups, you could follow in Barbara’s footsteps and start your own group. Both Parkinsons’s Foundation and American Parkinson’s Disease Association have lots of free materials for starting a group.
* You can let your doctor know that you are willing to meet with other PD patients in your age group, if she or he has any. By giving your physician written permission to allow other Parkies to contact you, you avoid HIPAA (Health Insurance Portability and Accountability Act) privacy concerns.
* Check your doctor’s office for flyers about upcoming events, such as deep-brain stimulation seminars. Even if you aren’t interested in the topic, it’s a great way to meet other people.I have found support groups to be absolutely essential for coping with this disease, and that goes double for Paul, my husband and care partner of 35 years.
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I am a 59-year-old woman. I’ve been fighting young-onset PD for 26 years. My urinary issues began about 6 years ago. I had a couple “accidents” at home–I didn’t just leak a little; I passed about ½ cup of urine each time. Ever since those incidents, I have worn Depends incontinence panties daily. I still have those accidents. At night, I wear them so that I don’t have to wake up my husband to take me to the bathroom.
So I called for a “first available” appointment in urology. He was a middle-aged man, who literally was writing a prescription for me as I was sitting down in the chair, before I’d even said a word! I insisted that he let me explain what was going on. It turned out that the Rx he’d been writing, for frequent urination, would not have addressed my issue, incomplete emptying of the bladder.
Here are some things I’ve learned about my urinary challenges over the years:
1) Hydrate! The recommended daily intake (RDI) for water is six to eight 8-ounce glasses of water. That’s half of a gallon. I have found it helpful to use a “coaching” bottle, which is a 64-oz. plastic jug with a gauge on the sides noting, in 4-oz. increments, how much I’ve drunk, with motivational sayings (“Keep on chugging,” “You’re almost there!”). Caffeinated drinks, such as coffee, tea, and Coke, are diuretics. In other words, they cause me to get rid of more liquid than I have drunk, which needs to be considered when computing my daily intake. Being fully hydrated helps me avoid urinary tract infections (UTIs), which are very common in Parkies.
2) See a urologist (Women: try to find a female urologist. We have additional factors (i.e., childbearing, menopause) that can affect our bladders.). Primary care physicians rarely have knowledge about Parkie pee problems unless we teach them.
3) Advocate! I may not have an M.D., but I have a P.H.D. (Personal History of Disease) that makes me an expert in my Parkinson’s. I have overcome my fear of asking “stupid” questions, but I do try to respect my doctor’s time by writing and prioritizing my questions in advance. If we don’t address them all during the appointment, I can leave the list with her so that she can have her nurse mail me additional information.
4) Have your care partner or a close friend come along to the appointment. It’s good to have an extra set of ears to take in what is likely to be a lot of information. Also, my friend and personal care attendant, Jillian, is often able to add changes she has observed during the eight hours we spend together every weekday. And she can translate my speech, which is soft, slow and often difficult to understand.
5) Carry incontinence products with you.
6) Women: do Kegel exercises to strengthen your pelvic floor.