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

Hello All:

For many Parkinson's patients, we have experienced a lot of symptoms that are PD related but don't involve tremors, gait, etc. which are more typical of PD symptoms. As I subscribe to Davis Phinney videos, I thought you might find this video interesting as it deals with non-motor symptoms of PD which includes sleep problems, problems with the digestive tract, etc. The title of the video is The Parkinson's You Don't See: Cognitive and Non-motor Symptoms.

Here is the link, https://www.youtube.com/watch?v=S2LP_5PC9LU

@sadiecora Restlessness at night is very common for people with PD. I understand the hot/cold phenomena very well! Here is a video you might find interesting about PD and sleep problems,

hi this is Dan or jdb I was recently diagnosed with Parkinson's disease and I'm just starting to deal with it I have questions regarding medication exercises and what to anticipate it seems to be a good idea to become a part of this discussion group and I'm totally new to this so I could use some input as to how to get going. I did post something last night and I don't even know how to find it but I'm sure in time I'll get this all figured out glad you have this forum and I look forward to being a member of it thanks.

@jdb Hello Dan and welcome to Mayo Connect. I'm glad that you decided to become part of our Parkinson's discussion group. Many of our members joined when they were first diagnosed. A diagnosis of PD always comes as a surprise but it is a manageable disease if you keep in contact with your doctor, take the meds and most importantly exercise on a regular basis.

If you could share a little about yourself that would help us get to know you. For example: what type of symptoms were you having that led to this diagnosis; what is the most difficult symptom you are dealing with; do you currently have tremors; what information do you have already about treating PD?

Many PD symptoms begin with a gait problem (drifting to one side when you walk, especially when are tired), also foot-dragging, speech problems, etc.

I look forward to getting to know you and I'm sure lots of our Members will share with you about their experiences as well.

Hi this is Dan. I'm a 68 year old male that lives in the woods of northern Wisconsin. I have numerous symptoms that led to a decent Parkinson's Disease diagnosis. The diagnosis helped to explain some of the symptoms that I was experiencing in the last, oh actually, couple of years. At this point in time I feel like I am able to deal with the symptoms. Probably most frustrating is the unpleasant reactions to the carbidopa-levodopa medication. Not seeing any positive effects after a month-and-a-half on the medication. Basically feel light-headed, dizzy, disoriented, fatigue while taking this medication. I'm seeing a new neurologist tomorrow and hopefully willl get some guidance on how to deal with this medication issue. Is this reaction to the carbidopa-levodopa uncommon?

I just have minor tremors in my right thumb. I've been doing a lot of research on dealing with Parkinson's. Luckily for me I enjoy vigorous exercise and continue to do that. I'm also looking into starting Big and Loud therapy.

in 1992 I had a serious accident that resulted in numerous fractures in my right leg. This makes exercising more difficult just dealing with the pain and swelling. Though complicated, I'm looking into a knee replacement sometime next spring if I feel that I have a handle on dealing with the PD.

Thanks for your help. I look forward to being a member iof Mayo Clinic Connect

Hi @jdb,
Thanks for providing some more information regarding your adjustment to PD and especially to the meds. I'm wondering about your reaction to the meds. When you started the meds did your doctor titrate the meds? In order words, did you start with a small dose for the 1st week and then increase the amount the next week? My titration went over a 5 week period, where I started with a 1/2 tablet of the carbidopa/levodopa for the first week and then increased by 1/2 the following week until I was up to 3 full tablets a day. This is the easiest way for your body to adjust to this particular type of med.

I'm glad that you will be seeing a new neurologist tomorrow. I hope you get some help with the med problem.

I look forward to hearing from you again. Will you post an update after you see the doctor?

Did you go up to 3 tablets per day, or 3 tablets 3 times a day?
Yes, the meds were titrated. They were to increase weekly 1/2 tablet more 3 times per day.

I'll check back in after my appt.

@jdb I just titrated to 3 tablets a day. Since then I've changed up my meds somewhat. Now I take 2 a day and mid-day I take a tablet of carbidopa/levodopa/entacapone. The last ingredient, entacapone, helps the carbidopa/levodopa to last longer. I really like this much better. A consistent exercise program will help you maintain greater flexibility and range of motion and help keep stiffness at-bay. Stiffness can be a real problem with PD.

I'm glad to hear you are considering the Big and Loud program. They are very helpful. Do you have a problem with soft speech?

Please read the responses to knee surgery before you have the knee replaced. It is nothing to "look forward to". Much heart ache and wondering!

I am talking about another Mayo section, like the Parkinsons section, that has 100's of responses in negative statements. (Worse than negative, if you can imagine.)

I have had 6 knee surgeries - four about knee replacement and two for other reasons. I am in constant pain from those related to TKR (the shortened form of "the knee replacement!). Was diagnosed with Parkinsons some years ago, and stopped taking the carbidopa-levodopa when we found it wasn't working. We found out the tremor in my right hand are "essential tremor" so no Parkinsons med would work for that (no other med works for extended periods of time, either).

Good luck, Hate to find folks like me -- dual diagnosis, if you will! Please read the TKR section before you have it done.

@teresa, Volunteer Mentor - My response to @jdb - @trouble4343 - was credited as a reply by hopeful3250. Sorry! this is from trouble4343. Can it be fixed? And maybe expanded to say the "actual name" of the section on knee surgery?