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?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

dodeebug | @dodeebug | Jul 10 1:38pm
In reply to @duckanyone "Noticed the use of Tramadol. I was on Tramadol but had to get off a few..." + (show)
@duckanyone

Noticed the use of Tramadol. I was on Tramadol but had to get off a few weeks before knee replacement surgery. After being off of it, I noticed that my brain fog and difficulty with word search had some improvement. If you struggle in these areas you may want to try a different pain med.

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Thanks every little bit of information helps

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dodeebug | @dodeebug | Jul 10 12:40pm
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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That is what I hVe been doing laughing at myself
Or I say you know what I mean or what's the word I'm looking for. My hubby says no don't no the word
It is hard but I tell him the word is hanging in the air right in front of me but my brain won't let me say it.
Very frustrating

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1 reply
dodeebug | @dodeebug | Jul 5 3:30pm
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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duckanyone | @duckanyone | Jul 4 4:02am
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.

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 3 1:08pm
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.

REPLY
janet42 | @janet42 | Jul 3 10:36am
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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dodeebug | @dodeebug | Jul 2 5:46pm
In reply to @hopeful33250 "Hello @dodeebug, and welcome to the Parkinson's support group on Mayo Connect. I see that PD..." + (show)
@hopeful33250

Hello @dodeebug, and welcome to the Parkinson's support group on Mayo Connect. I see that PD is a recent diagnosis for you. If you care to share more, what symptoms led to this diagnosis? Were you having problems with balance, gait, or difficulty walking?

If you have been prescribed meds, have they been helpful? I'm also wondering if you have been referred for physical therapy? Regular physical exercise, along with medication, is important for all PD patients.

I look forward to hearing from you again. Will you post updates as it is convenient for you?

Jump to this post

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

REPLY
1 reply
duckanyone | @duckanyone | Jul 2 4:12am
In reply to @eojeda1 "I think that finding the right regimen helps. My husband too has PD. Since his diagnosis..." + (show)
@eojeda1

I think that finding the right regimen helps. My husband too has PD. Since his diagnosis in Oct 2024, it has taken until now to find the right regimen of medications that work. My husband takes Ropinirole for PD and RLS, and he takes low dose Tramadol for pain. He backs this up with Ibuprofen and Tylenol when needed. He has improved with this regimen. All PD patients are different, and sometimes having to find the right thing that works for you is what is needed. Believe me, it has been frustrating for me and my husband, but I refused to give up and watch my husband suffer through it. I did the research and advocated for the changes with his doctors. Perhaps this is something that might work for you, but don't just accept what is as the last resort. See the changes, makes the changes and make it happen!

Jump to this post

Noticed the use of Tramadol. I was on Tramadol but had to get off a few weeks before knee replacement surgery. After being off of it, I noticed that my brain fog and difficulty with word search had some improvement. If you struggle in these areas you may want to try a different pain med.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 28 4:14pm
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.

Jump to this post

Hello @dodeebug, and welcome to the Parkinson's support group on Mayo Connect. I see that PD is a recent diagnosis for you. If you care to share more, what symptoms led to this diagnosis? Were you having problems with balance, gait, or difficulty walking?

If you have been prescribed meds, have they been helpful? I'm also wondering if you have been referred for physical therapy? Regular physical exercise, along with medication, is important for all PD patients.

I look forward to hearing from you again. Will you post updates as it is convenient for you?

REPLY
1 reply
jane87 | @jane87 | Jun 21 1:21pm
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.

Jump to this post

Take it from a non PD person, working in the yard isn't easy even if one doesn't have PD. I'm 87 and my dad had PD, so I know of what you speak.

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