I just emotionally really needed to express something positive and get my mind off of Exenatide.
In November I was riding my bike 25 miles a week. Last week I rode 80 miles.
In November I did not run, ever. I started with 1/4 mile. Today I ran 2 miles plus hiked 2. And I can run at least 3.
Not gloating. Or if I am, I don’t mean to be obnoxious. Just wanted to share something positive.
That’s great. I’m sure that will help your recovery, plus mentally it’s nice to get out of the house!
That's awesome. What made the difference
Not to blow cold water over your bubbly spirits LAJ, but in America, we are still in a heat wave in California. Plus, we don’t dare go anywhere for fear of COVID-19. I would bet that our friend, cclemonade was referring to a stationary bike which you would place inside your home and hopefully have your air conditioning on while “roughing”through it. :). Eazy, peachy, happy… LoL.
I could be wrong and I am not trying to diminish cclemonade’s achievements. I am just trying to alert you that it is the most common exercise around here unlike your country where people are fully vaccinated and get out more. Plus you have such a gorgeous beautiful country. Oh, my gosh! I would love to settle down there! If my Parkinson’s body will bend to my will. 
RKM
Yes, our misbehaving bodies ... I hear you, PD patient. Stupid disease.😟
Absolutely, Godiv. LoL. My wife was asking me to “program “ my mind to exert control over my body and “will” my body to submit and accept the fact that I don’t have Parkinson’s. I thought she was joking till I realized that she was serious!! She thinks even after 10 years, I might be exaggerating my symptoms subconsciously because of the Pavlovian response to levodopa
RKM
RKM I am saddened to hear that your wife does not understand. Unfortunately my husband does not either.And you are correct, I ride on a recumbent bike in my air conditioned basement. I do not do well in the heat and sun.
LoL, I am not “prescient” as @rzealot phrased it:). I cheated and read “recumbent” bike on your last post and placed a strong “cannot lose bet”. ROTFL (rolling on the floor laughing).
No, you are doing well and great with your exercise. We all have to be there for our kids as we are YOPC (Young Onset Parkinson’s Condition) and we have a long time to live. I am not sure if it is a good thing or a bad thing. My primary care doctor told me to expect to live beyond 90 if I continued to look after myself by keeping diabetes under full control and “kept moving “. “No matter what “ were her exact words.
Also a somewhat personal question, I don’t mean to pry or be nosy. Anyways you are anonymous. You said you have a basement. I wasn’t aware that it was an option in California. Can you please educate me? I would rush out to get one if it was. I miss ours in our old home in Connecticut.
RKM
I’m sorry about your husband not understanding either. Honestly. It’s been enough to have the stupid disease, but adding having to deal with that makes it 10 times worse I’m sure. I know our husbands and wives and significant others are probably scared. And maybe it’s hard to imagine how it feels to have it. I don’t know. Indoor riding is awesome! If you were outside you would get much less done because of the heat and you’d be exposed to traffic.And pollution come to think of it. Better indoors!
Oh no. I’m so sorry. That’s crazy I’m sorry to say. I’m sure it’s very difficult for her and she is felling like she has to indulge in some wishful thinking for both your sakes. Maybe? I’m sure her hearts in the right place I hope. Tell her if we could control it for heaven sake’s we wouldn’t be in this situation. We’d be out enjoying life like crazy.
Oh sorry to be insensitive.
Our country is beautiful and covid free, but our vaccination rate is still extremely low due to the slow arrival of it from Pfizer and the government not approving anything else. They are starting to come in now but we would be extremely vulnerable if it got in now.
Fantastic well done- great to share to inspire others
So wonderful to hear, and a true motivation for me to push harder! Thanks for sharing! Keep up the great work!
Cc, You are a Rock Star!!! Let’s plan a marathon to do together. Maybe somewhere in the middle for both of us. Some time next year. ❤️ K
Good to hear from you again! Are you still a DBS candidate?
Despe, I sure am. I’ve finished all of the evaluation appointments, now waiting for the team of doctors to go over my results and give me their final decision. We will see. I’m feeling positive and nervous. Thank you for asking. Karen
Karen! 💕🌸💕 a marathon! I will be your cheerleader on the sidelines you amazing lady! When I come back to your area which I most definitely am going to I really hope to meet you! You can run laps around me while I slowly chug along! ☺️ If you wear your Coco, I will wear my Dior Mademoiselle!
Cc, I love it!!! Well I’m kind of starting from ground zero again with the severed hamstring reattachment and will never be as I was but looking a head. Or even a duathlon, you bike and I’ll run!! Hugs my friend ❤️ Karen
Thanks for sharing. It inspires me!
Good for you!! What you are accomplishing is good for you physically, mentally, and emotionally. I have tried to turn my fear into action too by ramping up the breadth and depth of my exercise, trying new activities like golf and pickleball, and meditation. Thanks for sharing!
Thanks, It’s inspiring
Has it some positive effect on your symptoms as well?
You are amazing!
Wondering on the impact on your symptoms
Well done keep it up
You're right since i increase the frequencies of my exercises i felt better. Everyday that's what i do strectching routine, jogging, brisk walking, cycling , or just enjoying the outdoors listening to music with my headphones and singing along, helps a lot. I sure do hope it works for you too. An hour or so a day is enough.
Just rememeber to rest and to increase your calories to support the increase in your energy needs.
Wel done! I think it’s great! I also do a lot of exercise daily and I’m counting on it to keep me mobile for longer, hoping the symptoms will progress very slowly thanks to all my activity. Keep going!!
Hi. Amazing. Are you on Exanatide. My husband is hoping to do a trial with it. Anita
I’m not on Exanatide.
I am walking more, I am also in the process of fixing back up my road bike and mountain bike. Next week me and my work partner will start working out together at the gym at work...Way to go on the 80! I use to love century rides on the weekends... use to ride 20 a day during the week and on Saturday do a.75 or 100 miles ride... with my.PD diagnosis time to get back to it.
20 a day during the week plus 75-100 on the weekends!! That is AMAZING!
That was multiple years ago.. currently I am riding 30-45 minutes on my trainer and walking 2 miles 3x a week.. I am working on getting back to riding hard again.. I miss it and I need to let my PD know who's in charge.
Keep it up! You’re inspiring me as well. We need to stop being “used to” s and start being “I do s”!I’m getting my bike out!
Great job CC!! 😊😊😁
CC, African old proverb: “Every morning in Africa, as the sun rises, a gazelle wakes up and knows that it will have to outrun the lion or it will be killed. Every morning in Africa, as the sun rises, a lion wakes up and knows that he will have to outrun the gazelle or he will starve. "
Every day a YOPD gets up and starts running faster than yesterday and only she/he knows why.🏃♀️
A big improvement! Brava!
A warm greeting from Italy.
Gio
I love your proverb!
What I wonderful proverb! I will share it with my children
Thank you so much for posting your success. You are an inspiration.
Wonderful CCL. Keep fighting, keep winning...
Way too much for me. I did 46km on my new ebike with a friend whose a serious cyclist - which was twice as far as I'd been before. And used not much electric assistance. It was quite amusing because Damian was mothering me. "This next hill is a long climb but not too steep. We'll take lots of stops". He didn't get it that hills weren't a problem for me - I just had to choose more boost if I struggled. The problem for me was the flat trying to keep up with his 40km/h pace. With no electric boost, a heavier bike and fatter tyres. By EU law , e-bikes cannot provide assistance above 30km/h. Still - great fun, good exercise, and magnificent scenery. (We were a tour de France stage on 10 July)
Dont give up! You should look into eventually getting a road bike or a hybrid road bike. I have both, also invest in a good spin trainer.. you will be surprised at how easy your pace and stamina will improve!! Just keep riding!
Winnie, how do you keep your balance while cycling?
RKM
I don't have a balance problem. I ski black runs
Please remind me of you don’t mind, how long you have had PD (which may differ from diagnosis)
My profile is correct. Diagnosed march 2018 (cog wheel movement detected, expressionless face, no left arm swing, resting tremor sometimes in fingers) . First thought about it due to a mild tremor the previous August. Datscans confirmation May 2018. Various signs with the benefit of hindsight that I had it up to 10 years before (stiff neck, lower back pain, sense of smell, constipation)
I took an interest in isradipine and exanatide (and lots more) pre-diagnosis as I blitz researched PD and Dip due to amlodopine
PS the last black run I skied was obviously March 2020. Hoping the next will be December 2021. I can still put on my swimshorts standing up - the ultimate balance test
🙂
I walk 40 to 72 Minutes a day
CC,
Keep up the good work and stay positive. I believe exercise is Nr. 1 priority not just for PwP, as the Mayo MDS suggested to my husband, but for everyone. Both my husband and I have been physically active all of our lives. Perhaps exercising delayed husband's PD until his early 70s. EXERCISE is a must for physical and mental health!
That’s wonderful! I’m determined to do better. But I did buy a rebounder trampoline and wow that’s a workout. You wouldn’t think so but it is. Riding your bike and running and hiking are awesome. I’m thinking keep up with the bike riding to especially because of balance. It’s got to help balance I would imagine. I find it along with everything else losing balance and the feeling of confidence in your balance is the worst part of all this. So anyway very cool!
Have you ever seen the video of the man in his 80s with PD get on the bike and just take off?? Talk about motivation! He could barely walk but damned he could ride. If balance is an issue you can always invest in a recumbent tricycle.. its the exercise that's important also finding social rides is good!
You’re right ponieboy, Thank you!. I had seen that and it’s amazing. I have a stationary bike, and I love it, but it gives me sciatica. Or rather I guess I should say it triggers it. I had sciatica before. So I try to be careful to not ride on it every single day but still use it. I would love a mountain bike with big fat tires. I don’t know if it would work, But I’m surrounded by fields. The grass does get kind of tall though. I’ve tried to think of what I can use out there like rollerblades for grass or a mountain bike… But at least I do have the one upright bike and it might be worth getting a recumbent break bike on sale super duper sale somewhere. You are so right! I do have this issue of getting inflamed so easily. I have to limit my exercise or feel like I do. I’m not sure what that’s about.
Have you tried turmeric (circumin) for the inflammation? Also if possible can you adjust the position of your stationary bike? I have a mountain bike i do light trails with, enjoy it.. hope you find what works for you and embrace it...
Thank you all for your very kind and supportive comments! I’m only 46 and my PD is very mild. I’m aware that what I’m doing is not much for a fit person but I have never been athletic. I loved ballet until my teens but that was 25 years ago. I had not run a mile since being forced to in middle school PE. I’m embarrassed to admit that in November 2020, I cried when I ran a 1/4 mile and my husband was there cheering me on. I cried because I hated it so much. I share this in hopes that others who are not inclined to exercise, those who relate, will hopefully be encouraged.
The biking is on a recumbent bike. I highly recommend it. I use 3 lb. hand weights and do arm exercises as much as I can while peddling. When I’m too exhausted to hold the weights I move my arms like I’m swimming to work on my range of motion. I have reduced my shoulder pain since doing this. It makes biking a full body workout.
Today I ran 2 1/2 miles and walked up and down steep hills for about 4 miles. When walking I move my arms in large circles or punches as much as I can sustain. My neighbors must think I’m a weirdo but I could care less.
I would like to say how I really feel about exercise but since my subconscious is listening and I don’t want to demotivate myself I will refrain.
Thank you so much for your kindness everyone. It truly means so much to me. I am grateful.
When I make my next goal, I will update this post.
🌸
Way too go!
So is it a stationary bike then? (hand weights while riding make me wonder)
You've done a great job! Every reason to be pleased with yourself for making the commitment and sticking to it. Well done!
I am 52, had PD for a year.. tremors in my right hand dominate in my index finger.. meds haven't been successful yet. Been on Rytary for 3 months.. I want to avoid too many meds and look into alternative therapies and supplements. So been back to exercise and jumping down rabbit holes on alternative therapies, diet and gut health.
You are truely inspirational ! You can be rightly very proud!
Awesome. What helped make a difference in your performance?
Determination and will
Cc, For one of my marathons my neuro had a shirt made for me to wear while running the race it said……A new way of living with PD, Positive Determination! It was awesome. K
Wow! What an awesome neurologist!
He has always been very supportive . I am very fortunate to have him on my team. 😊 K
Karen, that sums up so much about you. I’m so glad you have a neuro that “gets you.”
Any changes in medication
Hi! Glad to hear you're doing well ! I'd like to ask, who gives you the injections?
I don't have a tremor. My symptoms are all movement related and I have
14 THINGS I HAVE LEARNT ON MY JOURNEY
Hi my question is do I have Parkinson's
Hi, I,m Fitzy,just become a member.Male, 61years old and this is my first blog ever!!!!!! so please bear with me.
