Sharing symptoms and experiences

@tuyetnga

I hope that the programming is going well after your DBS. How are you feeling?

I had the first programming done 9-30; while in the neurologist's office, she gradually increased the intensity and i responded better with the higher intensity, she was very please. When I got home, I noticed my walking is difficult again , I had a hard time making a step forward despite regular exercise and staying on the same meds, so it was disapointing. Called my neurologist yesterday, unfortunately she wasn't in her office. I could only wait and see. If my condition doesn;t worsen, I hope it'll improve more with the next adjustment. i heard it may take several times to optimize the setting, so i'm keeping my hope up. It'll be nice to be able to walk normally again.

I have a hard time making contact with people with Parkinson in my local area. It seems like they've stopped all activities since COVID. Does anyone know about an active Parkinson chapter in Orange County, CA ?

Hello @tuyetnga

If you are looking for a support group, you might check out the Parkinson's Foundation website, here is a link
--Parkinson's Foundation
https://www.parkinson.org/living-with-parkinsons/new-to-parkinsons
You will see a tab for Resources and Support. Perhaps you can find an online or in-person support group.

How are you feeling? Have you had any more adjustments made to the DBS device?

I'm a newbie to PD. Recently diagnosed, but looking back I've had symptoms for over a year. Going thru depression and anger, loss of confidence and coordination.
I feel terribly sorry for my wife since she not only has to help take care of me, but also pick up the chores that I used to do.

I think most PD patients have some symptom(s) prior to their diagnosis. Like you, I had the tremor for quite a while and lost my sense of smell even further back, but neither led to the diagnosis. The point about the symptoms is that they are manageable even though the disease itself remains incurable. You are blessed to have a partner for moral support, encouragement, and some occasional help, but you really have to take charge of your own program to strengthen your body against the onset of further symptoms. There are plenty of group programs like Rock Steady Boxing and private trainers that specialize in PD. Even YouTube has programs you can easily follow with some discipline which is what I chose since we live in a somewhat remote area. They are 30 minute full body resistance band workouts and I do a different lesson each day. I also try to keep up my walking and bike riding on a slightly less regular schedule.

So, welcome to the community and keep your spirits up. You have many years of productive life ahead of you.

Hello @rhuck513,

I see that you have been a member of Connect for a while now, but this is your first post in the PD discussion group. Welcome!

I know that the diagnosis of PD is difficult. Most of us with a diagnosis of PD can look back and see that we've had many of the symptoms for years before the diagnosis finally was made.

As Edward, @tedalmon, mentioned it is very important to take charge of this disorder. There are numerous YouTube videos with exercises for PD. These can be watched without a fee and can be very helpful.

Would you mind sharing a bit about the symptoms you've experienced that led to the PD diagnosis? For example, have you had falling or balance issues? Have you started taking meds or are you involved in physical therapy now?

Thanks for the greeting. I was diagnosed with PD at the Mayo/JAX in June of this year (2022), but I had been being treated for an Essential Tremor for quite a few years prior. My diagnosis was based upon a DatScan, which you probably know is a brain scan to track a radioactive isotope that binds to dopamine in the brain. The diagnosis was confirmed by a second opinion from a movement disorder specialist/neurologist at the Brown University School of Medicine. The specialist suggested that I down titrate off the Levodopa that had been prescribed at Mayo but was not effective for the tremor and to start to up-titrate on Primidone, primarily to treat the Essential tremor which he explained is a separate disorder that was responsible for my most troublesome symptoms. My Mayo neurologist concurred. Actually, except for the tremor and anosmia, I don't really have any other PD symptoms yet. I am still considering other interventions like DBS or focused ultrasound as further steps, but I am very committed to my exercise regimen in the meantime.

Hello @tedalmon,

I appreciate you sharing more of your journey with PD. I found your reference to "focused ultrasound" interesting. I was not familiar with ultrasound being used to treat PD. In case other members of our group are not familiar with it, here is some information from the Michael J. Fox website:
--Focused Ultrasound
https://www.michaeljfox.org/news/focused-ultrasound
You mentioned that you are trying Primidone to treat the essential tremor. How is that working for you?

First the Primidone, I am not yet up to the maximum recommended dosage and the treatment is only intended for the essential tremor in my dominant hand so I will still have the resting tremor in my other hand from the PD, but that is less bothersome. I would rate the Primidone so far as somewhat effective, but we'll see as I reach the max dose in another week.

As for (high intensity) focused ultrasound, it is being very aggressively promoted by a company called Insightech I believe, and is offered at what appear to be a network of medical centers as franchises where the equipment is in place and the practitioners have been trained. It was recommended by the movement disorder specialist in RI where there is a center at RI Hospital, but not strongly recommended at Mayo/Jax where they offer DBS as an alternative. FU is much less invasive, but DBS is potentially reversible if there are unwanted side effects, at least in theory. FU is a non-invasive outpatient procedure where DBS is brain surgery though, so difficult choices. There have been some rare reports of side effects from FU but the Brown neurologist said they are usually temporary, and that FU can now be performed for both sides of the body where it previously was limited to one side. There would be a delay of a month or so between separate procedures to assure there were no side effects from the first.

For patient with the tremor dominant form of PD like me, it is an interesting but a bit confusing choice of treatment paths at this point. Here in Florida there are FU centers in several major cities like Miami and Orlando, and also Delray Medical Center. if you do an on line search for information on the procedure be prepared to be contacted by the company's marketing team, but FU is a legitimate alternative treatment that deserves to be considered in some cases.