Earlier this month I spent some time in Arizona visiting family. The weather was perfect, warming up during the day and cooling off at night. Most of my family lives in the area around Phoenix. I am the only one living in California, so when I get a chance to make the drive for the holiday, my family will try to squeeze everything into my short stay… dinners, movies, hikes, puzzles, streaming TV, and even a trip to the zoo. With all this fun, you can easily forget your habitual Parkinson’s complaints. For example, forgetting to take your Parkinson’s medication on time can be a hard lesson to learn. Well little did I know that I was about to get schooled by a thing called trust.
My family is very active. My brother and sister-in-law own three successful optometry practices and my niece and nephew always have something in the mix to participate in. So, when my brother calls at the last minute to hike up a hill and watch the sunset, we all hopped in the jeep with the dogs and we were off.
With all the excitement and rushing around, I forgot one major thing… I have Parkinson’s. No, for real. My body sometimes forgets that I have a neurological disease. It’s like I have to remind myself that I am not capable of doing a lot of things I used to do. For example, my head remembers how to get out of a chair, but when I put my body in motion to get up, I find myself rocking back and forth trying to launch my body into orbit with no success.
I used to be able to walk down a flight of stairs… not anymore. My mind tells me “Oh, you got this… you’ve climbed a million stairs.” But when I take my first stride my body says, “nope…” As I forcefully cling to the handrail and take one step at a time. It’s scary when you can’t trust your body anymore. Will my legs give out on me when I take that first step?
The Hill
Another problematic thing about having Parkinson’s is I don’t know when I need to decelerate and slow my roll. It’s like I’ve lost my gauge on when I need to save energy. There is such a small gap of time when I’m feeling productive and my PD meds are rocking that I end up trying to do more than I should. If I’m not careful, I can do too much and then I will be wiped out for days after. Like climbing this previously said hill. My mind says, “you’ve hiked the Grand Canyon…twice… just go slow and you’ll be fine.” But my body has its own agenda.
I was shaking, stumbling, quavering like a newborn giraffe… only not as regal. I gripped my dad’s hand the entire hike and as I was being lugged up the slope, I reluctantly had to conclude that the hill has beat me. Another experience where I couldn’t trust my body to perform the way it used to. We never made it to the top, but the views we did see were tremendous.
Wonder what else I think I can do, but can’t. What if I was thrown into a lake could I swim? I used to be able to do laps in the pool, but now I can’t trust that I won’t sink like the Titanic. One other example of my distrust is when I tried riding my parent’s brand-new e-bike. I was relying too heavily on the phrase “Just like riding a bike” and didn’t even make it down the driveway before crashing on the asphalt. Guess you can forget. Parkinson’s has made me distrust my body.
Do any of you have similar situations when you couldn’t trust your body? Or maybe you realized that something you used to be good at has disappeared?
Hi Allison,The last year, my medication “off time” has been about an hour or a half hour after two to two and a half hours of ” on-time”. This made my day and up and down roller coaster ride and so despite my earlier reluctance I signed up to see if I was a candidate for DBS. The end of January I learned I was approved for DBS and was to make an appointment with a surgeon. And, then three days later, before making that appointment I learned by chance of a new therapy being clinically tested with amazing results.
At Stanford University, Dr. Tass has a therapy that is the best news I’ve heard since being diagnosed in 2010. So, I am going to give you some good news for a change and hopefully we will all benefit by this therapy I view as a “miracle”. I found a presentation by Dr. Tass on YouTube that provides a technical explanation for the treatment and the research that has been done. You may have already seen this but I was so encouraged.
https://www.today.com/video/new-vibrating-glove-eliminates-parkinson-s-tremor-157390405854
https://youtu.be/brXtorox6oE
Keep the Faith, Karol
Hello Karol,
Thank you for sharing. It’s always good to know what treatments are available or what’s coming up in the future!
I hve young-onset PD, have the DBS system, and it has made a HUGE difference, but today I had to begin the “interactive process” (can they accommodate my limitations) with the school district where I have taught preschool special ed (children birth to pre-K, with mild, moderate and severe disabilities) for 25 years. I can’t meet the physical requirements of my job any more. I go to myhigh school daughter’s basketball games, and can’t climb the bleachers to watch. Watching from the ground level isn’t nearly as exciting. We used to ride bikes, but chronic pain has made that activity too difficult. My daughters and I have always loved to travel, and as my older daughter is nearing college graduation, I’ve told her to choose a destination…. but will my mobility issues suck the fun out of the trip? Chronic pain is really crummy. I’m so blessed by good friends, and I still have a good quality of life, but I do worry about whether PD will steal my independence soon. Oh, and like several people have already commented, I used to have gorgeous handwriting. Not anymore.
Hello Karen,
It’s all the little losses that get you in the end. Something as easy as climbing the bleaches to watch your daughter play. Many people take these things for granted. Thanks for sharing your story.
I totally get the irritation and frustration when my body says F you. I used to be a nurse in the emergency and critical care setting. My tremors prohibit my doing this work anymore as well and the random involuntary upper body movements. Hiking, hunting, and fishing are, too say the least, is a very interesting experience. I have had to give up hunting due to it is no longer safe for me to handle a firearm or a bow. Imagine tying a knot in fishing line with shakes and body movements like I’ve been drinking coffee for three straight days. But all in all, its is an interesting and educational experience.
When i do get a chance to go swimming I stay in the shallow end cause I can not trust my strength to hold out treading water. I am also a certified scuba diver, sadly this is also a no go area now. I am not complaining or mad because I have Parkinson’s, its just frustrating. But on the plus side my wife and kids have a never ending source of entertainment watching me attempting to fish. Maybe ill take up fly fishing. Maybe ill get a tree trout
Hi John,
Fishing sounds like a good hobby… just watch out for those hooks!
Follow up on taking up fly fishing. I have started doing this and have caught many trees and bushes, no trout yet but its interesting
Once again, you tell it like it is, Allison!
I wish I could understand my body better so that I could trust it. I try to be as “on time” with my medications as possible. But if I take my Sinemet 4 times a day, I invariably move into a very exhausted dyskinesia. I hate that part of PD. But if I cut down on my Sinemet, i slow down almost to a frozen stop. I wish I could hit a balance between the two.
Hi Gail,
You’re so right! It’s kind of like walking a tight rope.
Allison,
Thank you for your blog post today. Your explanation of life with PD is right on target. The “alien” that shares my body is always trying to steal the things I love to do. I can no longer ride a bike. That was the first thing I noticed. My handwriting is teeny tiny and illegible. I used to teach handwriting. I can no longer hop, skip or jump. I am using a walker to walk because of my lack of balance. In spite of all these “I can’ts,”, my brain thinks iI can still do the things I did pre-PD. The alien may win now and then, but I will keep fighting..
Hi Ruth,
I totally can relate to the handwriting. I used to have beautiful cursive and now… it’s a mess. Keep fighting your alien.
My writing has gotten to the point where doctors are telling me I need to write more clearly
that’s my conundrum too. I’m 76 dx 10 years ago. and arthritis is complicating this too. I think like I’m free of PD and act like I did 30 years ago.
I’m really fortunate to have a movement disorder specialist who right sizes me and suggests that I should accept PD. So I do, but often I forget then I fall on my back.
So I get n up and continue . . . carefully.
we try – rog
challenges
Hello Roger,
I too have arthritis and it really adds another element to my Parkinson’s. Always finding challenges but you need to keep moving.
Alley as always, you have something important to say, and say it without pulling any punches. Believe me when I say, your altruism and sharing is so very much appreciated and so beneficial. I’ recall my initial diagnosis about four years ago and was lucky enough to find your blog. I can say that the information and camaraderie I have found in your blog have benefited me so very very much. You gave me a hand up when I needed it most. You’ve helped me map out these challenges in a very informed way. And got it successfully when the trail has gotten rough. All the best to you Alley. You are a special person who is much appreciated for your caring
Hi Wayne,
Thank you for such a kind comment. It makes me feel that I am reaching people from all over that might need a little support and that is awesome. You’ve made my week!
Hi Allison, Wow! I’m so glad I read this post! I think of the saying “ misery loves company”. For those of us with PD I would say that “misery needs and loves company!” As I was reading everyone’s story, I could put a check by almost all of the different challenges. I have a few things to share. I live in MI, which is on the opposite end of the weather spectrum of AZ and many other states in southern and southwest regions. Snow and ice are winter demons that take our everyday challenges of walking, falls and balance and sends them off the chart! “Freezing” takes on a new dimension. (Today the wind chill temperatures are below zero! ) Just a few more to note: escalators, bleachers, jumping rope, doing all the pill time mental math when invited to go.out to eat. *i appreciate this chance to vent, but I am meeting a friend for lunch @ 1:00pm, which is the same time I take round 2 of my meds. She invited me to go @ noon, but since I can’t eat 30 minutes before or one hour after a meal, I will take my meds 30 minutes early (12:30) and then I can eat @ 1:00.
( I think I’m going to need a nap! )
Hi Mary,
I didn’t even think about what seasons and weather could do to someone with Parkinson’s. Going outside in the snow and frigid temperatures could be intimidating. There are many obstacles that create a challenge. Thank you for bringing this topic up. I know that not everybody lives in Arizona or California! Ha!
Have you tried Deep Brain Stimulation surgery? I’m 66 and have had Parkinson’s for 12 years (non-tremors) and it saved my life and allowed me to cut down my levodopa from 16 a day (i was maxed out) to 4. I am also looking into ping pong, or Wi or virtual reality ping pong as it seems to reactivate or start new neurological pathways. Also, ricing a bike (trike) and doing aerobic exercise that gets your heartrate up to 60-80 percent of its max (180 – 190 is max for most people who are not in too bad of shape, so 80 percent of that would be about 140 beats per minute-get an ok from your doctor!). There is a study going on now.
Hi Joseph,
I have had DBS for almost 12 years now and it has saved my life too!
You are perky! I appreciate your warmth and your honesty. I was diagnosed last year, and though, I am not having the issues of mechanical failures, I do know what it is like to overdo it one day and then have to take it easy the next. I sense there is a real adventure waiting for me as the years go by. Reading your blog and the replies are teaching what a new normal can mean. And it will be okay.
Hi Gail,
You’re already joining the club! Finding out your new “normal.” It’s a journey we all must take at some point.
Thank you so much for this blog. It has helped me explain to friends and family what PD is really like. Today’s was special to me as it seemed you got inside my head and explained exactly how this movement disorder feels. I will pass it on.
Thanks so much.
Hi Cheryl,
I am happy to hear that my blog has helped. Thank you for sharing it.
I can still swim but can’t float anymore. I noticed it several years ago. Once upon a time I could float without effort but now everything but my head sinks.
I have a hard time getting up out of a chair/couch. I do the flop back down thing several times before I can get up. The floor is a nightmare to get up from. I fall up stairs and also do this weird thing where I pick up speed going down them and almost crash at the bottom.
My biggest thing I can’t trust about my body anyone is my bladder. I have learned the hard way not to think “I can wait till I get home”. It was really bad before my neurologist put me on a medication called Ongentry. It has been a lifesaver! My medication doses last longer and I take about half as much as I did before going on it. New years day I realized I had somehow ran out of it. Of course nobody stocked it and my mail order company had to order it. I was off 📴 t for about 10 days total and on day 5 when it was really low in my system I moved the wrong way and that was when I was 110% sure that it was helping my bladder issues. If anyone else has similar bladder issues give it a try. Also I have had zero children so it’s not from carrying children.
Hello Lisa,
What a story! Thank you for sharing about your bladder issues. I know you are not alone.
I had to learn to walk again, so that I could learn to run again. I developed bad habits walking and had to learn to trust that my feet would lift like they are supposed to. They don’t always lift still and I fall, but I’ve learned doing the things you love are worth getting back up for. This disease takes you back to the beginning… learning how to walk, talk, and eat solid foods.
Hi John,
That’s a good way of putting it… “Parkinson’s takes you back to the beginning.” Wishing you the best with your challenges.
Hi Alley Cat. Hang in there. Focus on what you can do and do it to the best of your ability. You’ve always been such a fighter. You can do this. Focus forward.
Hi Jerry!! It’s so great to hear from you! I am hanging on and trying to keep a smile. Hope you’re well!
OMG!
When I started reading your blog, just now, I kept thinking yup, yep, yep.… In other words, all of the above! I thought I was the only one with PD who suddenly sinks to the bottom of the pool,. Luckily for me, I was in the shallow end 😊. I’m so glad that I found your initial blog. It doesn’t make the situation any better, but it certainly makes me feel less alone.
Please keep writing, it makes me smile (which, as we know, is important to stop the awful PD mask face). Fantastic blog thank you.😊☀️
Hi Sue,
I am happy to hear you found my blog and that it has helped you smile. You are defiantly not alone! Parkinson’s will try to break you and some days it might but the most important thing you need to know is to dust yourself off and keep moving.
Another great blog. You remind us that we are not alone. Thanks
Hi you two! Hope you’re doing well and thanks for reading my blog.
I found out last summer that I cannot swim anymore. What a shock! I was kicking my legs ( I thought), but i was going down down down. Luckily, my son was there to catch me.
Haven’t tried riding a bike. My brain says I can do it. Wonder if my body has other plans?
Hello Jan,
Praise Buddha your son was there to catch you! Maybe try the bike with someone to help if you need it? Or there is always a tricycle…
Yes…I went to the store to get a tube of Mascara…Turned out my brand was on the bottom shelf…got down found it…could not get up…I looked around and realized that I had to put my hands on the floor….yucky…so gross…needless to say glad I had hand sanitizer….no more bottom shelves
Hi Linda,
The things we do for beauty. Bet that mascara is priceless now!
Hi Perky,
Turning around is an adventure.
Thanks for sharing!
Hi Royall,
Watch those turns. They can get tricky!
My wife has the same I can do this but then like you is benched for a couple of days. The new path for my wife is now a new diagnosis of Lewy Body Dementia with Parkinson symptoms. Living the past 12 years with a common misdiagnosis but still the same symptoms of Parkinson was an awakening experience that she is sharing. Keep climbing those hills.
Hello Andrea n Kevin,
I am sorry to hear about your new diagnosis. That defiantly sucks! It’s like you’ve been playing the game for 12 years and then someone comes and changes the rules. Thank you for sharing!
Hello Allison,
I too have a difficult time with stairs, especially when my indoor cats run up and down the stairs with me. I have fallen down twice (Ouch)! Now it’s one stair at a time. Thank God I haven’t broken any bones.
Disneyland has always been a magical place for me. Growing up in Los Angeles we visited the park often and would get on any ride with the shortest line. About two years ago my sisters and I stood in line forever to ride our favorite “Indiana Jones.” As we get closer to boarding the ride , I start having a panic attack, and I tried to put on a happy face, but I wanted off that ride so badly.. I noticed that there are many things that freak me out. I was never like this,. Pre Parkinson’s I was such a daredevil, skydiving, learning to ride a motorcycle. Now I can’t even walk into a doctor’s office without panicking.. Stupid Parkinson’s we are not friends!
Allison, thank you for sharing your journey with us. I always look forward to seeing your PerkyParkie in my inbox.
Warmest regards,
Linda
Hi Linda,
Isn’t it nuts that a movement disorder can cause such anxiety? I agree with you… stupid Parkinson’s! Thank you for reading and sharing your story with us.
Yes. I have problems getting up off the floor after playing with the pup. That’s no big deal, right? I start to get up and often kind of collapse backward. My legs didn’t get the memo.
Hello Bruce,
Keep playing with your pup! Dogs give so much love, there’s nothing like it. Just keep it safe.
Despite your limitations you still show up for roll call. I’ll bring a skateboard for the Michael J Fox Foundation walk on Sunday. We’ll have fun and raise some research money!
Hi Dad,
Sounds like a plan to me!
Yes, there are things I used to do and can’t anymore.
I was a scuba diver and went on many dive trips. A few years ago I was going to Florida and decided to bring my snorkeling gear.
I got in the water and was totally discombobulated- flailing away. I was shocked that I couldn’t even snorkel.
Hi Jan,
It is such a shock to the system when you lose something you didn’t even think was stolen. Thank you for sharing.
Allison, I love reading about your adventures (and mis-adventures). I pass this along to several friends who have been diagnosed in the last year or two. Although Eileen lost the fight, I am still heartened by your ferociousness and great attitude. Keep the fight going.
Hi Wally,
So nice to hear from you and thank you for passing along my blog. I miss Eileen, she always had such positive energy.
Allison, you are so spot on with everything you write about…thank you for every blog and yor ability to express so brilliantly what happens tobus when we have to live with PD.
My latest “trust issue” with my body is playing pickleball… can’t get quick enough to the ball. Believing my feet are moving… but they are suddenly not.. next thing I am wondering is, why did the opponent score a point, and why a I lying face down flat on the court???
Hi Ilona,
I have always wanted to try pickleball, but haven’t gotten the courage… yet.