Another checkup tomorrow

[kaypeeoh]

I thought I was due for a botox treatment. But my wife says, no, it's a general checkup. Last time I asked about red light therapy. Dr Bortan said she'd never heard of it but planned to research it. Hopefully she'll have something to say this time.

[Bolt_Upright]

Good luck!

[Smittybear7]

Good luck!I asked about red light, focused ultrasound, DBS, Response was there isn't enough information about success of those therapies. I am still looking for a neurologist I think will work with me.

[Kwinholt in reply to Smittybear7]

Interesting comment about the alternative therapies you asked about. DBS has been around for a while and I just had DBS last November and I consider myself a success. Now we all know there’s no cure but there’s alternatives to live a better quality of life. I hope you find a neurologist that’s informed. I am very lucky, I think I have the best doctor. Take care. Karen

[Smittybear7 in reply to Kwinholt]

Where are you located?Do you still drive? What medications are you on? I'm glad DBS is working for you. Take care and thanks for sharing your thoughts.

[Kwinholt in reply to Smittybear7]

I am in Sacramento California. And I’m 58 years old and have had Parkinson’s for 10 years. I do drive and the only meds I take now , after DBS is some cd/ld but has been cut back. No more Comtan or Azilect. I know this route is not for everyone and I’m not going to lie and say it was easy but you need to be informed of all your opportunities. Karen

[Smittybear7 in reply to Kwinholt]

I am currently taking one pill every 8 hours Carbidopa levodopa. I'm also taking 5 mg twice a day of Baclofen. Do you know any doctors in Pennsylvania did you could recommend? Thanks for your help

[Kwinholt in reply to Smittybear7]

When were you diagnosed? 1 pill every 8 hours is great. I was prescribed Baclofen for my severe dystonia cramps but I couldn’t take it. I didn’t like how it made me feel. I have always lived in California, so can’t really help on Dr. But just make sure they are a movement specialist. Take care. Karen

[Smittybear7 in reply to Kwinholt]

I was diagnosed in 2017 with parkinsonism. I didn't start medication until last October. Baclofen for cramping in my quadricep and that's helped. I started to develop some involuntary movements in my shoulder and lips when the Carbidopa levodopa was increase to1 and a half pills in the morning one pill in the afternoon, and one pill at night. We eliminated the half pill in the morning the symptoms continue but don't seem to be quite as bad.I'm seeing a neurologist who is suggesting 1/2 pill every 4hrs and see if that helps. I am also seeing a movement specialist who thinks I'm under medicated. I had some questionable blood results that have 2 be reviewed by my PCP. The result indicate the presence of cytoplasmic fluorescence. So for now I'm sticking with one pill every 8 hours and continuing the baclofen.. I've been in physical therapy in occupational therapy since September and have made great strides. Tremors and some involuntary movements AR my biggest complaints. My dad had Parkinson's and I watched it destroy his body. I'm trying to be positive and exercise everyday but I'm really scared

[Kwinholt in reply to Smittybear7]

I totally understand about being scared. Exercise is so good for you. I was an ultra runner but I severed my hamstring doing a Sparta with my son and then a marathon 2 weeks later. I had to take a year off and then Covid hit. My Dr has just given me the ok to run again after DBS. I had to get over my own head thoughts thinking I was going to jar something loose from my brain leads or my device. Keep strong. Karen

[Smittybear7 in reply to Kwinholt]

Thanks you too! Good luck with your running!

[Park4me in reply to Kwinholt]

Do you mind me asking where you had your DBS surgery. I am hoping to have mine soon. Been approved at UC Davis.

[Kwinholt in reply to Park4me]

My DBS surgery was done at Mercy General. When are you scheduled for surgery? Karen

[Park4me in reply to Kwinholt]

I haven’t received my date yet. I have completed everything except prepping bloodwork and prepping MRI. Any tips you could share would be highly appreciated! I am hoping for the Boston device. The appointment can’t come soon enough for me. I have dystonia more and more in both feet and leg pain a good part of the day. I am on 14 Rytary pills a day, Gabapentin and sinemet. Diagnosed 10 years ago

[Kwinholt in reply to Park4me]

Hi there, my device is a Medtronics device. I know every Hospital entity has their own protocol. I know someone who just had theirs done with Kaiser and their protocol was different than mine(Mercy) . The one thing that was hard , being awake for the brain leads ect, listening to the Dr chatter was hard. Well and of course the surgery wasn’t easy . I had both sides down for the first surgery and 4 days later the device surgery. And for the device I was put to sleep. It sounds like you are ready for this. And having positive thoughts is important. I’m hard on my self and expect perfection and I know this isn’t a cure but a tool for a better quality of life. Take care. Karen

[Park4me in reply to Kwinholt]

Thanks Karen. I am ready for this! I am pretty housebound and don’t drive much because of unpredictable pain. And the dystonia is scary when I am out and about. I’m hoping to get some relief from the dystonia and pain. And cut back on the medication.

[Kwinholt in reply to Park4me]

Yes , I too had very bad dystonia. Very painful and when first diagnosed had several freezing episodes and when your out and about , the panic makes it worse. My DBS has very much helped it. I was getting Botox injections in my legs and feet every 3 months for the dystonia and no longer need the injections . I am hopeful you will get relief as well. Karen

[Smittybear7]

Good luck

[kaypeeoh]

I forgot to mention, I told Dr Bortan that I stopped the sinemet two weeks ago. She said, "WHY?" I replied that I forgot to take it one morning and by early afternoon I still didn't convergence problems. So I kept waiting for the problem to recur but it never did. She still wants me on it and said to try a lower dose.