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

@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.

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

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.

@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.

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