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Living with Parkinson's Disease - Meet others & come say hi

Posted by Colleen Young, Connect Director @colleenyoung, Dec 8, 2016

Welcome to the Parkinson's Disease group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with Parkinson's or caring for someone with Parkinson's. Let's learn from each other and share stories about living well with Parkinson's, coping with the bumps and offering tips.

Chances are you'll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let's chat. Why not start by introducing yourself?

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

johnjames | @johnjames | Jul 4, 2018
In reply to @tllaes "To start my day at 6 am, I take Carb/Levo 25/100 (1/2 Tab) and Carb/Levo ER..." + (show)
@tllaes

To start my day at 6 am, I take Carb/Levo 25/100 (1/2 Tab) and Carb/Levo ER 50/200 (1 Tab). Then 1 hour later I take 1 tab of Memantine HCL and 1 Rivastigmine Tartrate Caps to address my mild cognitive dementia. For some reason I have a difficult time swallowing the Memantine. It sticks to my tongue and taking with apple sauce or ice cream doesn't help as I swallow everything but the pill. It is so frustrating. Do you know if I can crush the Memantine and then put in apple sauce? Once all my pills have been taken, I begin to awake and function pretty good for about 4 hours.

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The only thing that works for me- is Ensure, it works for me every time- otherwise mine stick in my mouth also. J South

REPLY
tllaes | @tllaes | Jul 4, 2018
In reply to @tllaes "To start my day at 6 am, I take Carb/Levo 25/100 (1/2 Tab) and Carb/Levo ER..." + (show)
@tllaes

To start my day at 6 am, I take Carb/Levo 25/100 (1/2 Tab) and Carb/Levo ER 50/200 (1 Tab). Then 1 hour later I take 1 tab of Memantine HCL and 1 Rivastigmine Tartrate Caps to address my mild cognitive dementia. For some reason I have a difficult time swallowing the Memantine. It sticks to my tongue and taking with apple sauce or ice cream doesn't help as I swallow everything but the pill. It is so frustrating. Do you know if I can crush the Memantine and then put in apple sauce? Once all my pills have been taken, I begin to awake and function pretty good for about 4 hours.

Jump to this post

Thank you. I will try Ensure to see if that works.

REPLY
ggopher | @ggopher | Jul 4, 2018
In reply to @tllaes "To start my day at 6 am, I take Carb/Levo 25/100 (1/2 Tab) and Carb/Levo ER..." + (show)
@tllaes

To start my day at 6 am, I take Carb/Levo 25/100 (1/2 Tab) and Carb/Levo ER 50/200 (1 Tab). Then 1 hour later I take 1 tab of Memantine HCL and 1 Rivastigmine Tartrate Caps to address my mild cognitive dementia. For some reason I have a difficult time swallowing the Memantine. It sticks to my tongue and taking with apple sauce or ice cream doesn't help as I swallow everything but the pill. It is so frustrating. Do you know if I can crush the Memantine and then put in apple sauce? Once all my pills have been taken, I begin to awake and function pretty good for about 4 hours.

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You might also consider Glucerna. Less sugar load.

Steve  

REPLY
beverleyb | @beverleyb | Jul 14, 2018
In reply to @melmaury "Hello I am caring for my husband who was diagnosed with PD 8 months ago; his..." + (show)
@melmaury

Hello
I am caring for my husband who was diagnosed with PD 8 months ago; his initial symptom was a profound and severe insomnia--that went on for many months!!!
It's difficult for me to tell this story
Prior to this illness he (and I) led an extremely active lifestyle; we were into avid cycling (both road and mountain) among other sports.
After a long and painful journey in and out of Psychiatry ( MDs were insistent he was having a bipolar illness) we finally were able to see a neurologist and obtain the diagnosis of PD
As of this writing my husband is so overwhelmed with anxiety he can barely get through his day!
We take walks 3-4 times a day ; do other exercises and attend a dance class on the weekends but he and I will tell you he is a shadow of his former self
We both feel since he has started taking these meds his anxiety has increased to the point of craziness
His MDs keep asking us to increase his meds (carbidopa/levodopa and pramipexole) but we both feel these are contributing to his anxiety -- as he is not feeling any relief since he has started them (he started the pramipexole initially several months ago, then the carbidopa/levodopa was added last month.
He tried taking other meds for anxiety but we found them not to be helpful
Prior to this illness he was not an anxious person at all!
To confound this he is now not sleeping very well; of course we are trying to keep the balance of healthy living/mindfulness/low stress/good support all in play here
We are both 62 years old; we live in Northern California

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Hi there
I take an old med called
Diazepam for anxiety. The Dr put me on it as is effective for a longer period of time than some of the newer drugs. I find it works very well but does make me very tired

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royprop | @royprop | Aug 16, 2018
In reply to @hopeful33250 "Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @Macbeth. Well we finally have..." + (show)
@hopeful33250

Hello @chrisj2491 @denie57 @johnjames @trouble4343 @ggopher @tntredhead @aperob @caryp43 @burgle and @macbeth. Well we finally have our own group! I'm excited to learn more about you and have some more topics for discussion. Let us know how you are doing and what has helped (or hindered) you in your daily life with Parkinson's. As we know, all of us are stronger together!

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Pull Test
Roys Pull Test 08/14/2018
First result is typical when one has Parkinson's. Second pull after foot is positioned for better recovery and balance. I was first diagnosed with Parkinson's in the year 2012. I credit my good condition to Doc. Costantini's high dose thiamine hcl advice.
(continue)
B1 Thiamine HCL therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to IM injection B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamin hcl stops the progression forever...".
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol.

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dfelix | @dfelix | Aug 17, 2018

I'm Dennis. My wife was recently diagnosed with PD. don't know what to expect. A little scary about future.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 17, 2018
In reply to @dfelix "I'm Dennis. My wife was recently diagnosed with PD. don't know what to expect. A little..." + (show)
@dfelix

I'm Dennis. My wife was recently diagnosed with PD. don't know what to expect. A little scary about future.

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@dfelix

Hello Dennis

Your concerns about the future are certainly understandable. While PD cannot be cured it can be controlled with the right kinds of medicine and an active lifestyle. Encourage your wife to get involved with physical therapy (especially the type for PD) and to remain active. PD is not a disease that you can take "lying down" you must be active. Those who are the most successful in keeping their disability at a moderate level are those who remain active.

Many hospitals also offer caregiver support groups where you can discuss your fears/anxieties about dealing with a loved one who has a chronic illness. Please give that a try!

Keep posting and let me know of your concerns.

Teresa

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beverlyann | @beverlyann | Aug 19, 2018

I’m just curious with the high doses of thiamine, do you have regular blood test or anything? I want to get this to try on my mom whom suffers a great deal with neck and hand tremors. I guess it is over the counter?
Thank you for your information!!!!

REPLY
4 replies
royprop | @royprop | Aug 19, 2018
In reply to @beverlyann "I’m just curious with the high doses of thiamine, do you have regular blood test or..." + (show)
@beverlyann

I’m just curious with the high doses of thiamine, do you have regular blood test or anything? I want to get this to try on my mom whom suffers a great deal with neck and hand tremors. I guess it is over the counter?
Thank you for your information!!!!

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Normal B1 blood level is to be expected. The therapy involves increasing the thiamine hcl level (Vitacost thiamine hcl in 500mg easy swallow capsules).
My personal experience - The positives: no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...
parkinson's high dose thiamine hcl
https://www.facebook.com/groups/232260083958797/about/
https://highdosethiamine.org/therapy-2/
Tremor is not easily impacted by thiamine hcl. It takes time with thiamine hcl and carbidopa/levodopa.

REPLY
1 reply
beverlyann | @beverlyann | Aug 20, 2018
In reply to @beverlyann "I’m just curious with the high doses of thiamine, do you have regular blood test or..." + (show)
@beverlyann

I’m just curious with the high doses of thiamine, do you have regular blood test or anything? I want to get this to try on my mom whom suffers a great deal with neck and hand tremors. I guess it is over the counter?
Thank you for your information!!!!

Jump to this post

Thank you again for this information!! I’m going to start my mom on this. They have added primidone and clonazepam to her card/Levo. Has really made her sleep and leg weakness. I’m all about a less aggressive way to treat the tremors.

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