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

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.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow member and volunteer patient Mentor, Teresa (@hopeful33250), when you post to this group. Learn more about Moderators and Mentors on Connect.

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?

@trouble4343. Yes, that is what the doctor said. I usually have so MUCH to go through with her, that concentrating on one thing is difficult. I had not seen her since Oct and I had three weeks in the hospital recently. So, she put aside a great deal of time to share with me and me with her. I am very thankful it is not PD. BUT, what is the reason this happens?

Hi,
I too am new here. I was diagnosed 4 years ago, have ADHD,Tourettes, restless leg, and Parkinson's, as well as terrible stenosis with pain in legs and arms.
THE ONLY THING THAT HELPS PARKINSON'S IS EXERCISE. And Cannabis, which helps, pain, mood and focus.
I've tried cycling for Parkinson's, boxing, and aquatic cardio program which for me is best. Massages regularly are a great help as well. but get yourself out and exercise!!!!

Well, I can get the massages, but No Cannabis. NOT in Texas. People tell me their friends get it, but I cannot seen to get lucky. Plus a 78 year old women going to prison in Texas is not a pretty thing. For years I have had RA and for years I used Cannabis. Suddenly we moved to TEXAS. There is no withdrawal as it is not habit forming. I am ok there. I am just sad and disgusted by the lawmakers in Texas.

@nyparkie

Hi,
I too am new here. I was diagnosed 4 years ago, have ADHD,Tourettes, restless leg, and Parkinson's, as well as terrible stenosis with pain in legs and arms.
THE ONLY THING THAT HELPS PARKINSON'S IS EXERCISE. And Cannabis, which helps, pain, mood and focus.
I've tried cycling for Parkinson's, boxing, and aquatic cardio program which for me is best. Massages regularly are a great help as well. but get yourself out and exercise!!!!

Jump to this post

Hello @nyparkie and welcome to Mayo Connect! I am so pleased to hear that you are endorsing exercise as the way to help you with the effects of Parkinson's. So many of us have found the same results. Without exercise people become very disabled. Exercise helps with range of motion (which counteracts the stiffness) and also balance.

I attend a PD dance class (done seated) because of the music which is energizing. I also find Tai Chi to be very helpful for range of motion and balance. I also use a recumbent exercise bike. I don't walk very much because of spinal problems that act-up when I walk very far.

Can you share with us what exercises work for you? Also, do you use any prescription meds like Sinemet? Please share with us only as you feel comfortable.

I look forward to hearing from you again.

Teresa

I am the husband and caregiver for my wife Toni who has had Parkinson's for 6 years. She also has Mild Cognitive Dementia. This past spring she fell and fractured her left femur and while the surgery was successful the trauma has accelerated the progression of Parkinsons. She now has rigidity in her arms and her hands get a vise grip when she holds on to something such as a grab bar to use the toilet. She tries to let go but it takes about 5 minutes for progress. Does anyone else have this experience? She takes Carbo/Levodopa ER and Cabo/Levodopa Immediate during the day and it helps. She is also taking Memantine and Rivastigmine for her Dementia. Once the medicine takes hold she can function pretty well for at least 6 hours. Following the surgery 3 months ago she is incontinent and we takes trips every 2 1/2 hours to use the bathroom to avoid wetting . She wears adult discreets during the day and night but is embarrassed to tell her friends. She is 73 and I am 77. Her Dr works very closely with us and feels the rigidity and vise grips should resolve it self with the correct dose of medication. Has anyone used Rytary?

Hello @tllaes

I am so pleased that your wife has such a good caregiver as yourself. I am sorry to hear that her PD symptoms have accelerated as a result of her surgery.

I have never used Rytary but I do know of others who have used it and were very positive about the results. I see that you have talked with your wife's doctor regarding the increased rigidity and he indicated that it would resolve itself with time. Did he give you any timeline when this might happen? Has he tried your wife on any other meds?

I hope that your wife begins to feel better. I hope that you post again.

Teresa

@hopeful33250

Hello @tllaes

I am so pleased that your wife has such a good caregiver as yourself. I am sorry to hear that her PD symptoms have accelerated as a result of her surgery.

I have never used Rytary but I do know of others who have used it and were very positive about the results. I see that you have talked with your wife's doctor regarding the increased rigidity and he indicated that it would resolve itself with time. Did he give you any timeline when this might happen? Has he tried your wife on any other meds?

I hope that your wife begins to feel better. I hope that you post again.

Teresa

Jump to this post

Thanks Teresa,
As I learn more I will communicate the same. The Dr didn't give me a timeline about the rigidity decreasing. It comes and goes and is definitely associated with stressful situations. She is doing PT twice a week and will start Speech Therapy and OT next week as well. In the past we did use Azilect along with the Carbo/Levodopa I mention before. We stopped the Azilect post surgery as it was causing a drop in her Blood Pressure.

@hopeful33250

Hello @tllaes

I am so pleased that your wife has such a good caregiver as yourself. I am sorry to hear that her PD symptoms have accelerated as a result of her surgery.

I have never used Rytary but I do know of others who have used it and were very positive about the results. I see that you have talked with your wife's doctor regarding the increased rigidity and he indicated that it would resolve itself with time. Did he give you any timeline when this might happen? Has he tried your wife on any other meds?

I hope that your wife begins to feel better. I hope that you post again.

Teresa

Jump to this post

@tllaes Thanks for your reply. Unfortunately, most PD meds do cause low blood pressure. I wish you both well.

I look forward to hearing from you again. We all learn from each other's experiences.

Teresa

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.

@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

Hello @tllaes

I appreciate your question about Memantine HCL. I would recommend that you speak with your pharmacist. He/She would probably know if this med can be crushed or not. I noticed in my search that it is also available as a slow release capsule. Is that available to you?

Teresa

@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

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

@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.

@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

You might also consider Glucerna. Less sugar load.

Steve  

@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

Jump to this post

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

@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!

Jump to this post

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.

Please login or register to post a reply.