Jane Manchee

Traveling with Parkinson’s Disease

Last month I was telling my PRO caregiver support group that full time caregiving doesn’t mean you still can’t enjoy traveling together. It takes planning, a sense of humor, perseverance, and a dash of “what the heck was I thinking?” It’s also possible to get the respite breaks you need and deserve while living with PD.

Over the years my husband Joe and I have done a fair bit of air travel, a lot of road tripping, and when Covid hit, like most folks, we pivoted to Zoom visits. In June this year we made our annual trek to our summer cottage in Ontario Canada. We like to go for a couple of months so we drive because we have our dog Jet and a lot of gear. Gear like Joe’s cooler full of meds, his CPAP machine, a wheelchair, a walker, our luggage, food, etc. to drag along with us.

My preference for driving was cemented after I flew with two large dogs in crates, a husband in a wheelchair, our luggage, and our easy 5-hour flight that turned into a 17-hour odyssey. I decided I’d much rather take the time to drive. It’s a long one, about 2500 miles and 5 to 6 days. I do all the driving but at least I can maintain some semblance of control and we manage to get into a workable rhythm. Generally, I pack us each a smaller bag for the road trip, ones that are easy to carry into a hotel and hold our essentials. I can change out extra clothes or meds from the larger bags without having to take them in every night. We try to get on the road by mid-morning, after breakfast and a quick walk for the dog. Along the way there are several pit stops, for gas, potty breaks, leg stretches, food, water. Occasionally we might detour for a sightseeing attraction. If we’re lucky we will have a friend or relative to spend a night with (depending on our route), but if we don’t have that as an option, part way through the day we think about how far we’re going to go and call ahead to get a hotel reservation.

I know lots of people prefer to have predetermined stops on their travels, but it works for Joe and me to remain pretty flexible about that. As long as they take a dog, aren’t outrageously expensive, are clean and comfortable, and have a well-lit parking area we’re happy.

In August we did the return trip to get home in time to fly (without the dog) to Scotland for Joe’s family clan gathering along the borderlands between Scotland and England. This trip took a lot more planning as we were meeting family in Edinburgh and I was going to stay two weeks longer for some caregiver respite and hike Hadrian’s wall with my sister. We had to consider things like electrical connections which are different in the UK compared to the US, so that Joe’s CPAP would work. Some of Joe’s meds need to be kept refrigerated in a special travel cooler. I also wanted to have extra meds in case of a flight delay or a malfunction of his Duopa pump.

I’ve learned that when traveling through airports with a mobility challenged partner having them in a wheelchair is the way to go. The airline staff help you get through the security and customs lines faster, there’s pre-boarding and people just tend to be friendlier and more willing to help, it makes travel so much easier. I can’t recommend it enough.

We booked our flight so that there was some layover time enroute which meant Joe could stretch his legs and we could be a bit more relaxed and unstressed going from one flight to the next. We also booked aisle seats so that Joe had easy access to the restrooms, and we were only a few rows from it which meant I could help him if he needed it. I spoke to the flight attendants before takeoff to give them a heads up and they were very accommodating.
We hadn’t flown with his own wheelchair before, but we did this time because our kids insisted on it and truly it was the best option for him as he could push it like a walker when he had the energy or sit in it when he was tired. It was super easy to gate check before we got onto each flight. Fortunately, he has three strong adult children who were willing and able to help get him around when we toured Edinburgh. At the gathering there were about 160 people with folks coming from Canada, the US, Australia, Europe and the UK. It was Joe’s second gathering having brought his sons more than 30 years earlier. It was quite special that they were returning with their own children. I enjoyed learning about the history of Joe’s clan as well as the other Scottish border clans who wrecked much havoc on the English. And vice versa.

Part of planning this trip included knowing that Joe would have 24-hour caregiving back in Portland while I extended my time away. His kids were able to get him home safely but with full work schedules and child rearing of their own were unable to stay with him. I managed to hire two caregivers who each stayed a week with Joe while I was in England. They are experienced caregivers who came over prior to our departure to learn our routine, meet each other, and familiarize themselves with our home. Corey had worked with Joe before and was able to pick him up at the airport when he arrived. I felt very comfortable knowing his first week he would be with someone he knew and trusted. The second week Emma stayed with Joe and while we
hadn’t worked with her before, we had known her socially for years and I was confident it would work out. I’m happy to report it did work very well. I was able to get some much-needed time off exploring the English countryside with my sister, Joe was well looked after, and we were both still in one piece when we reunited.

To help cover the costs of caregiving we are extremely fortunate to receive a grant through the Veteran’s administration which offers funds to help keep the veteran at home. If your PWP is a veteran I recommend having their primary care doctor connect you with a VA social worker who can inform you of the potential services available. I’m already thinking about some other respite trips knowing how well this one worked and together we’re in the planning stages of a short trip to New Orleans in the coming months. Bon Voyage!

Amy Lavallee

Amy Lavallee

I was 33, pregnant with my third baby, and started noticing a twitching sensation in my right toe. I chalked it up to stress and pregnancy.  

A year later I heard the dreaded words, “Its Parkinson’s.” I left the doctor’s office in a fog. I was so lost with absolutely no idea what to do next or where to go. I’ve been on a roller coaster – feeling like I’m never going to be the same person or feel normal again. This is a hard realization.   

Parkinson’s doesn’t care how old you are. It doesn’t care about family history or current health. It just shows up, uninvited and isolating. Parkinson’s Resources ensures no one has to face this disease alone.  

When I was ready to face my new reality I started searching for support groups, blogs, and resources online – so much was remote and sketchy. I came across PRO’s Facebook page and started following their events. 

When something terrible happens in life, all of your loved ones are there to help. “Let me know how I can help,” is the most thoughtful but useless phrase during that time. You love and appreciate the sentiment. You know you need help, but you just don’t know what kind of help you need. PRO knows the help we need and they provide it. I feel like the staff at PRO are the big comforting hug you need sometimes. PRO became that person for me. 

There are so many wonderful Parkinson’s organizations that focus on research, awareness, and health. They do good on so many levels, but you need a group that is ready to join you at a personal level that can hold your hand, get information for you, and direct you to local fitness classes, pharmacies, or transportation. I get a lot of good information on a national level but it is PRO that has provided the most help and support to me. They do it with love, sympathy and empathy. They know how I feel and how to handle the situation.  

My first year with my PD was hell, I was alone, frightened, and lost. I found PRO. They gave me the courage to get involved. Now I am 35 years old and know I am not alone. I have help and a path to the future.  

 

Michelle Garratt

Michelle and her father at sunset

As I write this reflection, I’m sitting at the Phoenix airport waiting on a rental car to head to Sedona for a women’s healing retreat. Two months ago if you’d have told me this is where I’d be I would’ve said you are crazy. Well, here I am opening up to a whole new adventure of healing inside and outside, making new friends and just experiencing the beauty of Sedona.

To put things in perspective, two days ago I was overwhelmed with stress and anxiety that forced me to stay in bed for most of the day. This is one of the ways that Parkinson’s rears its ugly head in me. When I feel healthy and less pain, I put my body into overdrive knowing it won’t last so I seize the moment. I often pay a price of fatigue and/or pain but I don’t want to miss it. It’s strange how one day I might be able to hike for 2 hours while another I’m barely able to get out of bed or I have so much dystonia in my foot I have to repeatedly stop and sit down on a walk. This is when I try to appreciate the little things. I try to look beyond my cramping and see what’s around me. Invariably I’m intrigued by a bird singing, the leaves blowing in the wind, someone’s laughter or just simply taking in a moment of stillness.

I choose to live by this simple philosophy regarding my Parkinson’s: focus on what I can do versus what I can’t.

This has really helped me through the last six years as I am a doer and I am an active bodied person. I am still that person but have to sometimes put on the brakes. In that moment where I’m pausing I try to be OK with it. Thank God I have a circle of friends that understand this disease very well as they live with it themselves. We communicate through Marco Polo, an online app where you videotape yourself and when someone in the group is ready they can watch your video and respond if they wish to. It has saved me through this COVID-19 quarantine. Simply knowing that there are people who get it and are there to support, listen, laugh or cry is encouraging. It’s an honest and open communication with some wonderful people. They also choose not to quit but lean in and make the most of this life. 

Lessons in resilience

I also credit my parents for a wonderful example of resilience, positivity and adventure. Both have endured many hardships and continue to today. Their faith and determination are unparalleled. I’m fortunate to have this framework as my model for life. My dad has late stage Parkinson’s and his grit and will are so admirable. My mom has RSD in one leg and just broke her good foot and ankle in 3 places. While she’s in great pain, she is determined to do it herself, at least give it a try and truly is my greatest witness to resilience while suffering. Important to mention, they both have learned it’s okay to ask for help with grace and gratitude. How lucky am I to have them as my parents and teachers.

I recognize March 23rd as my 6 year anniversary of being diagnosed with Parkinson’s disease. Whether or not this calls for a celebration is debatable. I do celebrate the lives this disease has introduced me to that have made it easier and honestly challenge me at being a better person. I also celebrate my inner strength and spirit that was always there perhaps but now shows itself to me in ways I can be proud. For example, once I was an avid runner and would spend a solid hour per day running for fun, exercise and inner peace. Since some of my symptoms are dystonia and balance issues, I can’t safely run. Plus it’s not enjoyable but painful. After mourning this loss like a dear friend, I took to the notion of “what can I do.” My husband Dan and I took this motivational phrase to a whole new level by moving onto a floating home on the Columbia River. Not only was it our dream to retire there one day but we also love to kayak. It was the best thing we have done since having a family. The daily movement of paddling against the current took away stiffness in my shoulder due to PD but also made me feel stronger. I actually forgot about Parkinson’s while out on the water. I’m forever grateful for our decision.  Another interesting thing occurred during COVID-19 quarantine. I decided to finally self publish my book for children and the response has been overwhelming. It just so happens that the message is timely for children coming back to school by helping them breathe deeply in and out with a calming rock on their body to help them feel more calm. It’s also a reminder for me to remember to breathe deeply as well.

I will admit there are times when I am so sore I need to remain in bed or see my Physical Therapist or massage therapist. Mostly I need to keep this body moving. Stretching. Breathing. So like my parents and parky friends I do my best to be in the moment and have the best day possible no matter what comes my way. Today is a gift!

 

Shuichi Goto

I first met Shuichi Goto on a PRO Zoom Tea Chat that was connecting our PD community through a no-agenda-chat time. I knew he would be someone I’d want to get to know while catching a glimpse through his laptop camera of two interesting things. Outside his sliding glass door was his visiting squirrel, eating acorns on the patio. The squirrel visits every morning, he says, along with a fellow scavenging Bluejay. Scan right and view a display of his wife’s bustling sewing business of uniforms for athletes worldwide. There’s a lot one can learn from Zoom. 

This guy is an athlete; positive, chatty, and an adventure seeker.

His first interest in gymnastics arose from inspiration during the 1964 Tokyo Olympics. He pursued his interest and went on to become a college gymnast, then coached in Nashville, TN, Champaign, IL and more recently at the Multnomah Athletic Club (MAC) in Portland, Oregon. I imagine his devotees have some stories. 

This guy is an athlete; positive, chatty, and an adventure seeker. He rode his bike from Portland to Timberline Lodge (72 miles and 6000 feet gain in gear 12), climbed Mt Hood and skied down 10,000 feet to Timberline Lodge, and swam across the Columbia River from Washington side to Oregon. (I don’t imagine he did all 3 in one day, but you can ask him when you meet him.) His adventures are not finished. His future plans are skiing the Canadian Rockies, exploring Europe and training through Japan. (He didn’t mention skiing Mt Fuji, but I’m betting that’ll be a stop.) I’m also pretty sure he’ll factor in time to nosh on nature and observe the wildlife.  

Shuichi grew up in Sapporo, Japan and relocated to Portland in 1989. He retired in 2018 from his coaching career at the MAC in Portland and his next adventure would be Parkinson’s disease, diagnosed in the fall of 2018. His daughter, who lives in Tokyo and plans on volunteering at the 2021 Tokyo Olympics, noticed a tremor when he picked up something from the dining table and told him he should see a doctor. He’s a newbie – just 2 years of PD diagnosis under his belt. It’s obvious he’s spent his adult life being a motivator to many, as he’s quickly scurried to adapt to his new life. He says he spent a little time thinking negatively and now just thinks positively forging ahead learning new things, like cooking and drawing. He doesn’t waste time burying nuts in holes or hibernating.

Life is now.

Shuichi now enjoys cooking Japanese, Italian and Chinese food. He still rides his bike with caution, not too slowly and controls his downhill descents – adjusting his ride to accommodate for the unevenness he feels between his right and left sides now. His enjoyment of downhill skiing also continues with his usual gusto – tempered with caution. He exercises five days a week and that has included (pre-Covid) PD bootcamp, yoga and ping pong at the Beaverton PRO office and swimming and weightlifting elsewhere. He recognizes that his life needs more than exercise to keep him moving forward despite his PD diagnosis. He quickly thanks those in the PD community who told him early on that he was not alone. That one realization and phrase boosted his emotions and will as he worked hard to continue exercising and making many new friends who understand.

As Shuichi forages mid-Covid exercise opportunities and friendships in the now, he also has joy in sharing his life before Parkinson’s and is figuring out ways to continue doing what he loves, though sometimes differently. His attitude is infectious and I’d say we could all use a little of that infection right now as an antidote for all we’re all learning about patience, resilience and simply joys.

Randy Pour

Randy Pour

My name is Randy, I’m 65, and 3 years ago I walked like the Hunchback of Notre Dame, a limping shuffle, frozen shoulders, and no arm swing.  If I was anxious or angry, my minor hand tremor turned into an arm swing 2 feet in amplitude, like a puppy dog’s tail.  I worked in grocery deli and customers started asking what was wrong, I looked ill.  My usually happy smile had turned into a frozen blank look.  My slowness on the job had people asking what was taking so long and I didn’t know.  Of course, it was Parkinson’s disease. 

My slowness on the job had people asking what was taking so long, and I didn’t know. Of course, it was Parkinson’s disease.

Then I moved from St. Louis to Rockaway Beach, Oregon and met Parkinson’s Resources of Oregon.  I had been taking Tai Chi before, I continued here with Oregon’s own “Tai Chi Moving for Better Balance”.  Plus I could walk on the beach and in the hills.  What really got me actively fighting PD was the library at PRO.  I think I’ve read 30 books, each with their own preferences and opinions.  So when enough books repeat the same idea, and I also like it, I ask my provider about trying it.  She is open to letting me try new things.  I presume it helps when I can supply medical references from the library. 

So, about St. Helens.  I got the idea in Portland at the WPC2016.  Brian Grant had a video of his PD group climb and I thought, why not me?  I worked harder at Tai Chi, I didn’t want to fall.  I also took longer walks on the logging roads with a loaded backpack.  Finally I ended up doing Tai Chi and aerobics with the backpack. 

Then I asked Lindsay and Dan, (my daughter and son in law) for help.  They had climbed on Mt Hood and done the Timberline Trail.  They pick a series of training mountains for me of increasing height and duration.  That allowed me to work out the timing of meds, what foods, and how much water to carry.  Clothing too!  We climbed: Neahkahnie, Kings and Larch at Multnomah Falls.  We had plans for Defiance, but the fires closed it.  So I went up and down on Kings Mtn until I had completed 90% of St Helens and had been climbing for 11 hours.      I’m ready now! 

PD Equals Slowness

PD equals slowness.  We had planned for 12-13 hours, but I took 16.  7am to 11pm, it was quite dark for the last 4 hours.  Besides Lindsay and Dan, two of their friends also helped me tremendously, Amanda and John.  These four were skilled and I was lucky – no injuries.  Well, I did have a sore backside from “sitting down” quite abruptly maybe 6 times.  It’s funny, but the final ascent took an hour and a half to climb, but only 7 minutes to descend. It was deep sand and gravel so each step up slid backward.  But down was like ice skating, each step slid forward. 

This dream was made possible by Chris, my wife.  Besides encouraging me, she had the very real job of parenting our fifth grader over the summer while I was training.