Parkinson's disease will be curable with cortisol

My experience with DBS occurred in 2021. After the scars healed and a lighter parkinson's cocktail prescribed, I spent a longer period with the surgeons physician associate than with the surgeon itself. The PA got my left hand without tremor after about the 3rd session. The right hand was another story . My right hand is my dominant and after two years it still has tremors. I've seem to have lost parts of my brain which formerly bought me great passionate i.e. crafts, hand writing/ printing that I and others could read what is written. If asked "would you do this again?" My response would be "that depends". How bad are your tremors? Are you willing to give up part of your intelligence? Do you fully understand both the limit of the expectations and the possible side effects. You are on the right path, talk to as many patients as you can and doctors as little as possible.

Well, this is interesting since I have been told I may be a candidate for DBS as my principal PD symptom is the tremor in both hands. So, my first question about your particular case (@lovesfabric) is would you get the DBS procedure reversed? My current understanding is that should be possible either by just turning off the battery or removing the electrodes? This to me is the principal advantage of DBS over a high intensity ultrasound ablation which is a far less invasive procedure but is not reversible.

I think most of us are somewhat trepidant about any kind of brain surgery, so I would like to hear from others who have had either DBS or another form of surgical intervention.

Edward
My son 33 has uncontrolled seizures, we've done the laser ablation, with limited success, then last year we had a VNS procedure with limited improvement. Now our PD is recommending DBS. Its referred to a the last resort in treatment options. Surgery is set for December but we want to wait and look for medication alternatives that are comin down the pipe. What would you recommend? How do you feel about having the procedure?
James

James, well, we know DBS is brain surgery. They drill a hole in your skull to insert the electrodes. It is a three day hospital stay and I am told about a month recovery and fine tuning the device. Still I was/am seriously considering it as opposed to my tremor dominant symptoms which medication have thus far been unable to control. I fully understand your ambivalence although I will tell you that my PCP tells me that he had two other patients who received DBS and both had remarkably successful outcomes. It sounds like focused ultrasound may be an option in between where you have been and where you are going that it may be wise to learn more about. It is being aggressively promoted by the manufacturer Insightech, so much info is available on line or at their many centers performing the procedure.

Then there is the fact that neither FU nor DBS are really a cure for the underlying PD, so there is always the chance that if we simply endure the symptoms for a bit longer, the REAL answer may emerge? Sorry not to be more helpful, but we are both facing the same dilemma.

Hello @susan62

It has been a while since you last posted about your PD symptoms. How are you doing with symptom management?

i HAD TOO MANY SIDE EFFECTS AND i WAS TIRED ALL THE TIME.

Hello @missbutterfly2be,

I see that you are a new member to the Parkinson's support group on Mayo Connect. Welcome!

I agree that most Parkinson's meds, including Amantadine, lead to fatigue and have other side effects as well. I've taken Amantadine for several years and I've worked with my neurologist to lower the dose until I could get the most benefits from it without as many side effects. Every person reacts to meds differently and that is important to realize.

I look forward to getting to know you. As you are new to the group, please share as you are comfortable doing so, a little about your journey with PD. For example, how long ago were you diagnosed? What are your most troubling symptoms right now?

I am following on behalf of my wife who has Parkinson. Hers is a little unusual in that she has difficultly walking, but has no upper extremities shaking.

I have been trying to get her an appointment with a doctor at Mayo Scottsdale. She is registered and has a patient number and her medical files have been sent in
Not sure if the next step. Any advice would be appreciated.

I am also a patient at Mayo for my heart. I have a left ventricular assist device LVAD

Love you attitude!!! You got this!!

I have been trying to get an appt at Mayo for my Mom. No luck. They told me they aren’t accepting any new incoming patients in the Neuro dept. Jacksonville. I’m
So frustrated! Best of luck and prayers for you and your wife!