1. < Parkinson's Disease

My Parkinson's life is so confusing - this is not easy.

Posted by johnnyvsn @johnnyvsn, Oct 27, 2024

I was officially diagnosed with Parkinson's May of 2019. I have been taking Rytary since diagnosis and can say it really does help me feel "normal", but just for windows of time. Sometimes the windows lasts a very short time, sometimes longer. I am not as sharp minded as I used to be. I just don't understand how my body can feel so bad a lot of the time, then feel normal at other times. Does anyone else struggle with accepting this as just the normal life of a Parkinson's sufferer?

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janet42 | @janet42 | 3 days ago
In reply to @dodeebug "Hi I was just diagnosed with PD 2 months ago. I took care of my dad..." + (show)
@dodeebug

Hi I was just diagnosed with PD 2 months ago. I took care of my dad for the last 2yrs of his life with his PD. So I am well aware what I have to look forward to. It is difficult because I have always loved working in the yard, sewing, painting and working out. Gave my bike away afraid of falling. Now use walker for my longer walks. Use cane for shopping. Ok getting around house just have limp. Hurts me to talk to people as some words just escape me. I just want to stay home but I know that is not good. Thank goodness I have a wonderful hubby that cares deeply for me.
I should tell you I am 88yrs young. Have cried many time. Prayed lots.

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Hi. I was diagnosed 2 months ago also. It was hard to take! I’m
On carbidopa/levadopa. Have not seen much improvement. My gardening is my passion too. I’m 83 years young! I have movement issues just like you do! Are you taking medicine?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | 3 days ago
In reply to @dodeebug "Hi thanks for taking time to read about me and PD. I am taking carbilevadopa and..." + (show)
@dodeebug

Hi thanks for taking time to read about me and PD.
I am taking carbilevadopa and is helps with my left hand tremors.
I had no idea that i had PD. I go to a nerurologist fir Restless Legs and neuropathy in my feet. I take Ropinitrole for those problems.
Last year i woke up with my left leg numb and left hand was paralized. I called my docor and he thought i was hsving a stroke and told me to go immediately to hospital. I was given all kinds of test and after 3 days was told it was a nerve in my neck.
Going for my appointment for my legs doctor said no it was a stroke. I went for hand theraphy. My hand works now but much slower. And i have a limp.
I use a cane fot stability and if i take walks i use my walker.
I have not had a problem with falling but can no longer walk my dog. This i really miss as he a wonderful Border Collie mix.
Oh and i started having urinary problems wich i just blamed on old age. My primary doctor gave me a pill to help. Now i have read that more than likely it is csused by PD I use pads and remind myself to go to the bathroom about every hour. I'm sure thinking back i have had PD for sometime. I can't believe all the tests i have gone thru.
I also started going to a counselor to relieve some stress.
Hope all is good with you.
Regards a fellow PD
Caroline

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Hello @dodeebug

I can understand what you mean when you say, " I'm sure thinking back, I have had PD for sometime." Many of us with a PD diagnosis can say the same thing.

Regarding the urinary problems, pelvic floor therapy (https://connect.mayoclinic.org/blog/take-charge-healthy-aging/newsfeed-post/control-of-frequent-urges-with-bladder-training/) might be helpful. You may consider asking your doctor for a referral for this type of therapy.

Also, many hospital systems now offer PTNS procedures for urinary problems, (https://www.mayoclinic.org/tests-procedures/neurogenic-bladder-bowel-management/about/pac-20394763)

Both of these are good tools for dealing with urinary urgency and frequency.

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duckanyone | @duckanyone | 2 days ago
In reply to @windyh "I can really identify with your comments! It is confusing & frustrating & impossible to explain..." + (show)
@windyh

I can really identify with your comments! It is confusing & frustrating & impossible to explain to others I am grateful for the times that I feel "normal" - or nearly normal. I am also aware that I seem less "sharp" mentally. I am used to being the smartest kid in the room,...but, sadly, no more.....................It is good to share these things with other PDers, make me feel less alone

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I understand the less sharp mentally. I process things slower and when I try to talk about things I’ve read or heard I can’t seem to put it into smooth conversational speech. Thankfully I have an odd sense of humor so I am learning to laugh at myself and not take it too seriously but sometimes it still frustrates me.

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1 reply
dodeebug | @dodeebug | 1 day ago
In reply to @duckanyone "I understand the less sharp mentally. I process things slower and when I try to talk..." + (show)
@duckanyone

I understand the less sharp mentally. I process things slower and when I try to talk about things I’ve read or heard I can’t seem to put it into smooth conversational speech. Thankfully I have an odd sense of humor so I am learning to laugh at myself and not take it too seriously but sometimes it still frustrates me.

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Oh you have that right. Before they told me I had PD I blamed ot on old age.
I'm 88. Now I let .my friends know so they can help me fill in the blanks. Or I'll just say "you know".
This isn't for sissy. I cry every once in .awhile then I stop and see a sick child on TV with cancer. I tell my self I hav had a wonderful
Life. My hubby is always saying he loves me and showers me with kisses
Out of 3 husband's I finally found number1. I have to stop now as I keep falling asleep and I find this happens frequently now.
Hope to hear from you.
Regards Dodeebug

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