I am hoping that this information would help you and your patients. I was having only 1 to 2 hours of sleep per night with stiffness and sleep talking many times through the night. I was waking up with severe pain every morning. Since I've been put on Rytary before bedtime which for me is about 11:00 to 11:30 p.m. I have slept all the way through. And woken up with very little pain. I take two 36.25/145. I started out with one pill which was not working as well. The only thing is when I wake up I could be groggy some warnings after. It has been a blessing for me.
For me, the drool goes down my windpipe and I start spastically coughing trying not to choke, for a few minutes at a time. When this is happening it can happen six times in an hour. I try to do this mechanical thing with my arms up at shoulder height, with fists, knuckles together close at sternum level, and coughing hard from my diaphragm to reposition whatever that's called that would normally be check valving my drool from going into my respiratory tract. I try to sleep on my sides when this is more frequently happening. It takes me awhile to eat.
Swallowing and autonomic difficulties related to saliva can be very challenging. If you haven't yet, you might benefit from talking with your doctor about adjustments to your Parkinson's medications, exploring Expiratory Muscle Strength Training, and connecting with an occupational therapist.
I have a cleft palate and cleft lip. I have never until lately had nasal speech and my lip incision is eroding. I never thought that my birth defect would be affected by Parkinson’s and facial. Contractions 10:05
RLS has been a horrible symptom for me. Sounds fairly innocuous, but it feels like torture. I've been helped by the rotigotine patch, but had to increase the dose within the first year and it's losing effectiveness again...
We know RLS can be very difficult. Some people experience benefit from massage before bed. There are a variety of massage devices that can be useful, like handheld percussive massagers. Other people report benefit from using weighted blankets, or putting a pillow on their legs. Of course, be careful with these options, though, as they can make it hard to get in and out of bed.
I wake up sometimes 4-5 times a night because of frequent need to urinate. Sometimes I can fall back to sleep but many times I am wide awake. I use a pee bottle so I don’t .have to get out of bed. And there are times I can sleep for four hours at a time which is wonderful for me. What can I do to get more of those nights.
Here is another resource with some tips about navigating urinary issues: th-cam.com/video/X4GftJcsUpw/w-d-xo.html If you haven't discussed this with your care team, consider doing so at your next visit. Adjustments to your medications may be able to help.
I have a double whammy. I have Polycythemia Vera and PD. Sleeping and pain are the norm for me. But the fatigue sometimes is sometimes too much. I try to exercise but there are times I can't get my heart rate out of zone 2 no matter how hard I push myself
@erichouck9487 This is certainly a tough pair of conditions to manage. We hope you have a strong care team that includes attentive and knowledgable physicians and physical therapists who understand the way PV and Parkinson's together influence your capacity for intense activity. The general recommendations and strategies for exercise duration and intensity for Parkinson's may not be applicable for your situation.
We're sorry to hear that. Parkinson's is hard enough without extra agitation. Be sure to mention this to the physicians who prescribe the medication for you. There may be adjustments they can make.
That was excellent . Unfortunately for me i have almost all those symptoms. thank you
I am hoping that this information would help you and your patients. I was having only 1 to 2 hours of sleep per night with stiffness and sleep talking many times through the night. I was waking up with severe pain every morning. Since I've been put on Rytary before bedtime which for me is about 11:00 to 11:30 p.m. I have slept all the way through. And woken up with very little pain. I take two 36.25/145. I started out with one pill which was not working as well. The only thing is when I wake up I could be groggy some warnings after. It has been a blessing for me.
There are the other odd symptoms and not so odd, ones, but it does help to know that these are not figments of my imagination.
For me, the drool goes down my windpipe and I start spastically coughing trying not to choke, for a few minutes at a time. When this is happening it can happen six times in an hour. I try to do this mechanical thing with my arms up at shoulder height, with fists, knuckles together close at sternum level, and coughing hard from my diaphragm to reposition whatever that's called that would normally be check valving my drool from going into my respiratory tract. I try to sleep on my sides when this is more frequently happening. It takes me awhile to eat.
Swallowing and autonomic difficulties related to saliva can be very challenging. If you haven't yet, you might benefit from talking with your doctor about adjustments to your Parkinson's medications, exploring Expiratory Muscle Strength Training, and connecting with an occupational therapist.
I have a cleft palate and cleft lip. I have never until lately had nasal speech and my lip incision is eroding. I never thought that my birth defect would be affected by Parkinson’s and facial. Contractions 10:05
RLS has been a horrible symptom for me. Sounds fairly innocuous, but it feels like torture. I've been helped by the rotigotine patch, but had to increase the dose within the first year and it's losing effectiveness again...
We know RLS can be very difficult. Some people experience benefit from massage before bed. There are a variety of massage devices that can be useful, like handheld percussive massagers.
Other people report benefit from using weighted blankets, or putting a pillow on their legs. Of course, be careful with these options, though, as they can make it hard to get in and out of bed.
I wake up sometimes 4-5 times a night because of frequent need to urinate. Sometimes I can fall back to sleep but many times I am wide awake. I use a pee bottle so I don’t .have to get out of bed. And there are times I can sleep for four hours at a time which is wonderful for me. What can I do to get more of those nights.
Here is another resource with some tips about navigating urinary issues: th-cam.com/video/X4GftJcsUpw/w-d-xo.html
If you haven't discussed this with your care team, consider doing so at your next visit. Adjustments to your medications may be able to help.
I have a double whammy. I have Polycythemia Vera and PD. Sleeping and pain are the norm for me. But the fatigue sometimes is sometimes too much. I try to exercise but there are times I can't get my heart rate out of zone 2 no matter how hard I push myself
@erichouck9487 This is certainly a tough pair of conditions to manage. We hope you have a strong care team that includes attentive and knowledgable physicians and physical therapists who understand the way PV and Parkinson's together influence your capacity for intense activity. The general recommendations and strategies for exercise duration and intensity for Parkinson's may not be applicable for your situation.
All the drugs give me extreme agitation & a sense of not being myself
We're sorry to hear that. Parkinson's is hard enough without extra agitation.
Be sure to mention this to the physicians who prescribe the medication for you. There may be adjustments they can make.
😢