For me the worst thing about PD is doing everything I took for granted before has become a challenge. Going out to a restaurant with family and friends I watch everyone having a good time, while I contemplate how am I going to walk out of here. This disease really sucks. I hope to God some effective treatments are coming soon.
Even the simplest tasks require gargantuan effort. People have difficulty understanding. Everything you said is totally 100% accurate. I fkn hate Parkinson's but I fight everyday to have some kind of life. In fact, this morning, getting back to bed I lost my balance and nearly fell. I caught myself, but my hand landed on my glasses and I bent them.
Hi J, the thing that has changed the most for me is the time that it takes to get ready to go anywhere. Buttoning shirts? Snaps are preferred now. I don’t like cold weather so I’m not looking forward to winter. “It’s gonna be a while “will be worn in well by next spring.. I’m thinking that the exhaustion factor is a big thing as well…Later dude!
JayMac you’re the best. All the same back at you and then some. Getting jumpstarted in the morning sucks. Waking up hours before I have to sucks more. Cramps in the legs is great exercise and sometimes hurts a lot more than it should. What’s the fun part? I have to plan everything from going to get the mail to doing laundry. Not big on sharing, none of my peeps need to know all the fun I’m having. Stay safe and strong.
Fortunately, I have a mild case of PD. Hoping it stays that way! Yes, I have to modify the way I accomplish tasks too especially when the squirming sets in 30 minutes after I take my medicine. Once a week I sit down and parcel out my pills for the week during an on time; doing otherwise results in dropped bottles and flying pills. We have to be creative in figuring out how to get the job done. Sinatra sings another song just for us----'I Did it My Way."
Hey Jeremy. I’m two years into diagnosis and am lucky to be able to do most things well though my left hand and arm are becoming rigid with tremors. ANXIETY is my biggest issue. I used to speak in front of large groups. Now just the thought puts me in a panic. Anyway, thanks for sharing with us. You make it easy to relate. Jack Mack
Hey Jeremy i feel you! Fatigue kicks my butt. Even when i do sleep, i get vivid dreams and i wake up more tired than when i went to bed. One day at a time. Peace friend!
Great video brother ❤ pd is everywhere! I went to local gym yesterday to work out. I haven't been in a gym since my younger days. I had a good workout, but everyone was looking at me. Unfortunately that made my symptoms start. Luckily I was minutes away from ending my workout. Today I actually signed up for 1 yr. Going back in few minutes.
Nearly a year since diagnosis (though I’ve had symptoms about 2 years) and hanging in there. I’m most affected by diminished fine motor dexterity in my left hand, which impacts my ability to type. Writing is a big part of my job, so I’m trying to get used to dictation software. Otherwise my left arm moves slower that it did in the pre-PD days. A foot tremor makes folks think they make me nervous (they might, but the tremor has nothing to do with it). Hat tip on the Sinatra album…
My Amantadine isn’t working so great. My left foot wants to turn in at different times and my left hand flicks out. I’ll need to discuss with the doc soon. My PD is still manageable but it’s definitely getting more annoying.
Hey Do you or anyone else experience nausea from the Levadopa? I sometimes can't make my dosage time due to an empty stomach. I some times take Ondansitron for nausea, but that's just as awful.
The unpredictability is what really gives me the poops. Random symptoms. Random side effects. Never the same thing at the same time. Never the same result from the same actions. Random. Unpredictable. That’s my whinge😜
Can i add another thing i hate about PD? I hate levodopa. I'm literally afraid to eat in fears my meds won't take. I have lost 30 lbs. I have no more fat to lose.
This may help some of our friends...if you get leg cramps put a bar of soap between the sheets as soon as the cramp starts grab the soap with your hand or with your leg and rub the area. Also use a bar of soap to get out of bed...press down on mattress with soap in hand either making a fist or flat palm
For me the worst thing about PD is doing everything I took for granted before has become a challenge. Going out to a restaurant with family and friends I watch everyone having a good time, while I contemplate how am I going to walk out of here. This disease really sucks. I hope to God some effective treatments are coming soon.
Restaurants and movie theaters used to be my favorite places. Now I almost never go. It’s a huge bummer!
Indeed. I get it. I don't go anywhere if I don't have to
Thanks Jeremy for sharing the good times and bad times with Parkinson's
I hear you...take care...
Will do! You, too.✌️
Even the simplest tasks require gargantuan effort. People have difficulty understanding. Everything you said is totally 100% accurate. I fkn hate Parkinson's but I fight everyday to have some kind of life.
In fact, this morning, getting back to bed I lost my balance and nearly fell. I caught myself, but my hand landed on my glasses and I bent them.
Falling is the thing that scares me the most. Thx for watching!😎
Hi J, the thing that has changed the most for me is the time that it takes to get ready to go anywhere.
Buttoning shirts? Snaps are preferred now. I don’t like cold weather so I’m not looking forward to winter. “It’s gonna be a while “will be worn in well by next spring.. I’m thinking that the exhaustion factor is a big thing as well…Later dude!
I sometimes have to have help with putting a t-shirt on, so I feel ya, bro!
Im in southern Illinois!!❤❤❤❤
Not far at all!
You’re my favorite. It’s hard to do my makeup
Well thank you, Lori
JayMac you’re the best. All the same back at you and then some. Getting jumpstarted in the morning sucks. Waking up hours before I have to sucks more. Cramps in the legs is great exercise and sometimes hurts a lot more than it should. What’s the fun part? I have to plan everything from going to get the mail to doing laundry. Not big on sharing, none of my peeps need to know all the fun I’m having. Stay safe and strong.
Thx, Tom. I have a hard time sharing so many of my struggles, too. I just hope that others can see that they are not alone. Stay strong 1
Fortunately, I have a mild case of PD. Hoping it stays that way! Yes, I have to modify the way I accomplish tasks too especially when the squirming sets in 30 minutes after I take my medicine. Once a week I sit down and parcel out my pills for the week during an on time; doing otherwise results in dropped bottles and flying pills. We have to be creative in figuring out how to get the job done. Sinatra sings another song just for us----'I Did it My Way."
Thx, Jane! Like Old Blue Eyes says, Idid it my way!”
thank you 4 sharing my friend
Anytime, friend!
Hey Jeremy. I’m two years into diagnosis and am lucky to be able to do most things well though my left hand and arm are becoming rigid with tremors. ANXIETY is my biggest issue. I used to speak in front of large groups. Now just the thought puts me in a panic. Anyway, thanks for sharing with us. You make it easy to relate. Jack Mack
Same here. I couldn’t imagine working, I’d have a nervous breakdown.
Agreed!
I have always had problems with anxiety, and pd has most definitely made it worse. Hang in there Jack Mac!✌️
Hey Jeremy i feel you!
Fatigue kicks my butt. Even when i do sleep, i get vivid dreams and i wake up more tired than when i went to bed.
One day at a time. Peace friend!
One day at a time indeed! Thx for watching and commenting!😎
Nope, nothing is easy with Parkinson’s! Eating Ben & Jerry’s in the middle of night (like I just did) makes that reality a little better for me 🙃
Love it!
Great video brother ❤ pd is everywhere! I went to local gym yesterday to work out. I haven't been in a gym since my younger days. I had a good workout, but everyone was looking at me. Unfortunately that made my symptoms start. Luckily I was minutes away from ending my workout. Today I actually signed up for 1 yr. Going back in few minutes.
You be you and don’t give a blip what other people think of you. You are a mentally tough dude, so just keep doing what you’re doing!✌️
Lots of fatigue, depression, anxiety, loss of smell, taste.
Thx, Justin!
Nearly a year since diagnosis (though I’ve had symptoms about 2 years) and hanging in there. I’m most affected by diminished fine motor dexterity in my left hand, which impacts my ability to type. Writing is a big part of my job, so I’m trying to get used to dictation software. Otherwise my left arm moves slower that it did in the pre-PD days. A foot tremor makes folks think they make me nervous (they might, but the tremor has nothing to do with it). Hat tip on the Sinatra album…
Sounds like you’re hanging tough, dude! Glad you dig the Sinatra record!😎
I am from Québec and my main langage is french but I can speak english too
from Montreal
I have a little French in my family tree. However, I have trouble pronouncing French words. The spelling is so much different than in English.
I have a 6 hr car trip coming up and I'm worried sick. Will I get stuck in the bathroom stall?
Some people won’t understand, but it’s a real concern for us. Good luck!✌️
My Amantadine isn’t working so great. My left foot wants to turn in at different times and my left hand flicks out. I’ll need to discuss with the doc soon. My PD is still manageable but it’s definitely getting more annoying.
Amen to that! Keep me updated, Michele!
Hey Do you or anyone else experience nausea from the Levadopa? I sometimes can't make my dosage time due to an empty stomach. I some times take Ondansitron for nausea, but that's just as awful.
I personally don’t but heard quite often of people having that reaction to Sinemet.
The unpredictability is what really gives me the poops. Random symptoms. Random side effects. Never the same thing at the same time. Never the same result from the same actions.
Random.
Unpredictable.
That’s my whinge😜
I completely understand! I never thought I would be the “pill guy” always taking something. Maddening!🤬
Not to mention the anxiety
Agreed!
bonjour jeremy
Hello! Are you French, Mike?
ANXIETY, FATIQUE AND PAIN!
Yes, yes and yes!
Can i add another thing i hate about PD? I hate levodopa. I'm literally afraid to eat in fears my meds won't take. I have lost 30 lbs. I have no more fat to lose.
I have to be so careful with eating, too. I will only eat protein for breakfast and then right after my last dose before bed.
Definitely not being able to stand/walk when dyskinetic. Also putting on eyeliner and chopping things.
I have the same problem! It’s so frustrating!😡
This may help some of our friends...if you get leg cramps put a bar of soap between the sheets as soon as the cramp starts grab the soap with your hand or with your leg and rub the area. Also use a bar of soap to get out of bed...press down on mattress with soap in hand either making a fist or flat palm
Good tips! Thx!