Bertie79

[Bertie79]

Hi

Im the sole carer for my partner who has a treatment resistant form of PD.

I would like to hear about the experiences of others in a similar situation.

[Bolt_Upright]

Welcome. You might want to join the Zoom calls MBAnderson is so nice to host. You will meet a lot of nice people with a ton of experience in all sorts of treatments. You will be welcomed.

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[gingerj]

Hi Bertie79Can you say more about the treatments your partner is on. And what he has tried do far that haven't worked.

[Bertie79 in reply to gingerj]

He was prescribed 200mg of Medopar which did nothing, then 300 mg which also did nothing. We tried 400mg, but that caused confusion and was dropped back to 300mg. A brain scan was unremarkable. We have never been prescribed anything else.

There is no tremor. The main difficulties other than 'freezing' is dysarthria, dysphonia and excessive saliva.

[gingerj in reply to Bertie79]

Im not 100% sure, but I think DBS wouldn't be much help for him. Im sure I've read that freezing isn't improved at least. I think for this you could look at the CUE1 device. I think they still have a waiting list so if you want to try it get on the list asap.charconeurotech.com/what-is...

[crewmanwhite]

There is no "treatment resistant" PD, only "medical treatment resistant" PD.

If you work through my suggestions in various books and blogs, find the causes, then work to reverse those causes, your partner's health will improve and your burden will be lighter.

[Gallowglass]

I’d suggest looking into DBS, Deep Brain Stimulation surgery.

It can be helpful even without medication. You would need to see a Movement Disorder specialist or a neurologist who will treat pd. They will do testing, to be sure it’s PD and that the dementia is not too advanced. The surgery itself is not an easy experience. They run wires into the brain and connect them to stimulator device that is implanted in the shoulder area. Then they send signals that stimulate the brain and you feel better with less CL or even without any meds. DBS can improve quality of life for many years ,

[edapeach]

My response to Parkinson's Disease (PD) meds was nothing, dull headache and/or sleepiness. However I was tremor-dominant. I had DBS surgery about 3 years ago, but I had a DaTscan before that to confirm Parkinsonism. Parkinsonism is a family of brain diseases of which PD is the most common one, but there are 3-4 others (LBD, MSA, PSP). DaTscan is quite definitive for Parkinsonism.

My tremor now is 90% gone, but slurred speech, imbalance and FOG are more pronounced. Some research suggests that DBS might help speech, imbalance and FOG, and others suggest those are side effects. I'm not taking any PD meds now.

What types of brain scan has your partner had? If he had a DaTscan, and it was "unremarkable", there's a good chance your partner doesn't have PD.

[caitilin in reply to edapeach]

From what I’ve read and heard about the diagnosis of Parkinson’s disease I have come to understand that we truly have no way to actually confirm the diagnosis of Parkinson’s other than by autopsy.

I also heard many times from different sources that a neurologist with special expertise in the diagnosis and treatment of Parkinson’s could use the way a patient responds to “the gold standard” of PD medication, i.e. Carbidopa/Levodopa as reasonable evidence that Parkinson’s is present when the patient has an initially favorable response to the C/L intervention.

[edapeach in reply to caitilin]

 caitilin Sorry about the confusion. I did not intend to indicate that DaTscan was used to diagnose Parkinson's Disease. My MDS used the DaTscan to confirm "Parkinsonism" and he then ruled out the other Parkinsonisms.

[YOParky in reply to edapeach]

Hi edapeach. This is a little bit off of what's being discussed in this thread, but I noticed you mentioned post dbs you now have slured peech, imbalance, and FOG( cognitive impairment). Did you notice a hint of any of these at a lighter degree prior to DBS? Maybe intermittently at times of when you may have been on a higher than normal dose of c/l?

[edapeach in reply to YOParky]

Hi YOParky , No I didn't notice any of those symptoms although the tremor was overwhelming at that time.

[gwendolinej]

my husband was first diagnosed with Lewy Body dementia, which is a Parkinson’s dementia. Madapar did nothing . Our neurologist then tried the Neupro patch. The result was dramatic and he was rediagnosed with Parkinson’s. His symptoms were not the same as yours, but that should not matter.

The Wellred infrared and near infrared coronet with the Coranase attachment restored his sense of smell and taste. Their Therapad on the gut has also helped many. Lots of info on this site and YouTube.

The B1 protocol works for many. Get the book by Daphne Bryan, Parkinson’s and the 1 Therapy (available on Amazon and other places). Daphne is a member on this site. She has a Facebook page, but you do need the book.

I think Bolt_Upright’s suggestion would also help. Suggestion…try one thing at a time so that you know what’s working…speaking from experience 😄

Good luck,

Gwendoline

[mhberman]

Bertie

Treatment resistant PD often means that the underlying cause has not been determined. This wheee it be necessary to think outside the standard treatment model. I consult with people in your situation about benether and how to think about and engage in alternative treatment modalities. There are more than a hundred approaches that have price. Useful in remediating PD symptoms in SOME PEOPLE! It is not practical to think you’re going to determine which is right using online feedback solely from contexts like this one.

I’d seek professional guidance from clinicians with broad knowledge of traditional and alternative modalities. It’s that or you’re left throwing spaghetti at the wall.

Marvin Berman PhDo