Connect
Are there are any young onset Parkinson's patients in our group?
I was wondering if any young onset Parkinson's might be in our group? I was diagnosed 20 yrs ago as having Essential tremors at the age 46 but had the symptoms for quite a while before being diagnosed. The doctor had put me on a medication called Topamax which had a major side effect, which I was one to have it. It caused many patients to have loss of memory. I don't believe they use this medication much any more. I was then put on Propranolol. To control my tremors I had been on very high doses until it affected my heart. That started my journey with knowing I have had young onset Parkinson's all along. The same symptoms back then I still have. Getting off of Propranolol and on to new medication has been a challenge in it self. I ended up needed to stay on 60 mg so my resting heart rate would stabilize. Primidone did not stop my tremors so the new neurologist tried Carbidopa Levodopa and had the full work up for Parkinson's. The amount of medication was over 20 pills a day with meds to extend the life of this medication. I began a problem with all of my other medical issues such as kidney failure, and heart condition's, eye problems such as double vision. I have now found all of these are the result of Parkinson's. What have others had to deal with if you were diagnosed with this condition? I hope we can continue to learn from each other!
Like
Helpful
HugInterested in more discussions like this? Go to the Parkinson's Disease Support Group.
Connect
Hello @nova11723, and welcome to the PD support group on Mayo Connect. I appreciate you sharing about your journey with PD. Have you had any physical therapy, or have you been involved in any exercise programs to help with your PD symptoms?
What has been most helpful to you in dealing with Parkinson's?
-
Like -
Helpful -
Hug
1 Reaction@hopeful33250 yes the big physical therapy was a great therapy I took about a year ago. I signed up with a Neuro Wellness Center where they tested me and decided the Boxing therapy would benefit me so I do that twice a week with Physical therapists that a trained in Parkinson's therapy so I feel very comfortable and well monitors. On my own I also have a group in Tai Chi which meet twice a week so I feel I have the exercise covered right now. If there are others which might help please let me know. Thank you Teresa.
-
Like -
Helpful -
Hug
2 Reactions@nova11723
Hi there, I am still trying to put things together on what is really going on with my many different conditions so I understand what you mean about one day feeling normal and the next I am reminded I am not. When I worked my career in CT Computer Axial Tomography I worked really close with the neuro surgical team as they prepared the patients for the DBS. This was many years ago and I know the procedure and the technology has made great leaps and bounds. It is an option for many people and I would consider it if I ran out of all other options. The Vyalev pump has helped so much in reducing my daily medication that has been my life saver right now! This group has really helped me in focusing the direction I need to work on! I do have a neuro psychiatrist and help in these new medical conditions and how to deal with them. There will be more tests but one day we will finally know why so many conditions are part of the neurological disease we all seem to be going through.
-
Like -
Helpful -
Hug
2 Reactions@hopeful33250
Teresa I will post again when I get the results of the biopsy on Monday. My labs have been all over the place so as a result Friday I did have a CT calcium coronary Score test which added another area they will be working on. I now have Atherosclerotic cardiovascular disease (ASCVD)What they are recommending to help with this I am mostly doing for Parkinson's the diet and exercise but I will probably be sent for stress tests and a coronary angiogram I am already set for an echo and heart monitor. I guess with my low blood pressure causing me to pass out may have saved my life so they can treat me for this new condition. Have you dealt with any of these symptoms?
-
Like -
Helpful -
Hug
2 Reactions@hopeful33250 I was at one point diagnosed with frozen shoulder, which involved physical therapy. When my medication is too strong, my arm can become sore with something close to "golfer's elbow." It also may be due to the typing of emails I have to do at work. Anyway, the physical therapy helps then. I also find that playing tennis helps too with my arm and in general. Any exercise seems to be very helpful in reducing my anxiety, and yoga and stretching is also beneficial.
-
Like -
Helpful -
Hug
3 Reactions@wkrebs59 I have had DBS mentioned to me a few times, and studies were cited that it is more helpful if you do it early in your progression. I have been resistant until medicine can't control my symptoms. One neurologist told me it was typically used after having the condition for 15 years. I am sure it works; I just don't want to use all my options, like you say. I am not sure I am right about this so other viewpoints are welcome.
One doctor asked me how I got Parkinsons. I thought that was a strange question.
-
Like -
Helpful -
Hug
2 Reactions@nova11723 I think we are both understanding that the DBS has had great results for many people. My doctor doesn't feel that I need it at this time and I have been doing great with the pump and free of so many medications. I have met so many people that say they are doing better after it and are able to walk where their tremors were so bad and this device allows them new found abilities! I also have friends who have not had as well results and had to remove the unit. I believe the risks are both ways. If I had no other means I certainly would give the Stimulator a try but I don't think right now it is my best option . Do we really know how we get Parkinson? That is a strange question unless others in the family might be a genetic.
-
Like -
Helpful -
Hug
2 Reactions@wkrebs59
I have dealt with terrible vertigo, which affects my balance and increases my risk of falls. I've been involved in exercise programs that help with balance, mainly online exercise classes. Tai Chi has been proven to be very effective for Parkinson's. I subscribed to many of the free YouTube channels that offer PD exercises.
I have had heart stress tests (nuclear tests) to determine heart function and, of course, echocardiograms twice a year (I have heart valve damage from childhood Rheumatic Fever). There is a lot to consider, isn't there?
@wkrebs59
I'm looking forward to hearing about the results of the biopsy. Will you post an update when it's convenient?
-
Like -
Helpful -
Hug
1 Reaction@hopeful33250 yes there is I start my cardio work up next Monday with an echocardiogram and Tuesday a heart monitor for 10 days. I really am enjoying my Tai Chi and Boxing classes the hard one for me is the walking at the mall by Friday I don’t have much energy left. That’s where we have to push ourselves!
-
Like -
Helpful -
Hug
3 Reactions