WHICH WOULD YOU CONSIDER AS THE MOST BENEFICIAL TO YOU AS A PD TREATMENT? MEDICATION OR DBS.

[GBAMIGOD]

Hi fellow parkies and caregivers.For patients and caregivers,your opinions we go a long way to help me decide on my options,at the right time.Please if you have been on medication therapy for sveral years and then opted for surgery with DBS.Kindly share your experiences.As I understand through my searches online and communication with different online PD experts,that DBS has it's trade offs and medications have scary side effects.Thanks.

[Lionore]

No one in the online group can answer your question, nor should they. Everyone is different. Are you under the care of a board certified neurologist who is also a Movement Disorder Specialist? If not, please locate a physician with these credentials and make an appointment ASAP.

[park_bear in reply to Lionore]

He is asking for people with DBS to share their experiences. Nothing wrong with that.

[GBAMIGOD in reply to park_bear]

Thanks park_bear. You hit te nail on the head.

[GBAMIGOD in reply to Lionore]

Thanks. I am already under the care of a MDS.I just want advice from Pwp,who have done DBS surgery as well.

[Lionore in reply to Lionore]

That is good that you have good care. Please forgive my somewhat brusque answer. In reading through your previous posts, you indicate that anxiety is a problem and also that it’s been about a year since diagnosis. DBS may be a long way off for you, or may never happen for whatever reason but worrying about the future may be a symptom of PD for many of us.

I can absolutely relate since I struggle with anxiety at times, which can cause insomnia and worries about the future and spent the first year post dx trying to keep working to save as much as possible for the day when I might need someone to care for me. When I finally realized that I was working against myself, I retired and imperfectly began to follow the suggestions here regarding exercise, supplements, nutrition, etc.

[GBAMIGOD in reply to Lionore]

Thanks Lionore. I hope I would not need the DBS at all.Like you said,anxiety in PD makes you worry about almost everything.It is pretty hard staying positive.

[ddmagee1 in reply to Lionore]

Excellent advice, Lionore!

[Hidden]

Try this first....because DBS is not reversible. John Pepper, Care to comment?

m.sunshinecoastdaily.com.au...

[GBAMIGOD in reply to Hidden]

Thanks malayappan.

[Hidden in reply to GBAMIGOD]

You are welcome. See this link for some good info. My doctor is pushing this, but I am not convinced that this is the best option. At least not in the early stages of the disease. What terrifies me is the possibility that after DBS, our bodies may stop responding to Sinemet. If you Google it, you will see anectodal evidence.

ohsu.edu/xd/health/services...

[pjokeefe in reply to Hidden]

I was lucky enough to watch John Pepper in action in Melbourne during his 2016 tour of Australia. I had just been diagnosed at the end of 2015 and was at sea about what the future held. John's presentation changed my thinking and now my exercise regime (inc fast walking) is my main treatment along with HDT and minimal meds. Thank you John for opening my eyes to what can be achieved with conscious thinking.

[GBAMIGOD in reply to pjokeefe]

Thanks piokeefe.

[TexasTremor in reply to Hidden]

DBS is reversible. You can’t remove the scars or the experience of going through the surgery, but it is reversible.

[GBAMIGOD in reply to TexasTremor]

Thanks TexasTremor.

[Hidden in reply to TexasTremor]

Thanks for your update. Please keep us updated on how you do with your surgery.

[JohnPepper]

What about the third choice? Have you not even given a thought to starting to do fast walking before considering such a dangerous operation as DBS. It is nowhere near 100% safe, because I have personally met three people who had DBS and either lost the power of speech or sight. Another good friend battles to talk properly, although he can still talk. He spoke quite normally before he had the DBS. His problem was the resting tremor.

Don't think because you shuffle or fall a lot that you cannot do fast walking. I used to shuffle and I have had my fair share of falls. I have learned how to CONSCIOUSLY CONTROL MY MOVEMENTS and I have also learned how to roll, when I fall, so I don't hurt myself.

Because of the fast walking, taking conscious control of my movements, managing my stress levels, being positive, keeping my mind stimulated and only taking an MAOb inhibitor, I was able to come off Pd medication in 2002 and have stayed off it ever since. As long as I keep up the fast walking I stay well and live a normal life at the age of 84.

[Hidden in reply to JohnPepper]

John, you are my inspiration. I am 54. I would be grateful for another 30 years!

[JohnPepper in reply to Hidden]

Hi malayappan. Let me possibly help you achieve your wish. Contact me on my website and I will show you how, at not cost!

[Hidden in reply to JohnPepper]

They even have a center for DBS failures!

movementdisorders.ufhealth....

[JohnPepper in reply to Hidden]

Thanks malayappan. I am pleased to hear this news. I will pass it on to others.

[GBAMIGOD in reply to JohnPepper]

Hi JohnPepper, your story is incredible.Are you claiming that you are completely off PD medications since 2002?So you don;t shuffle anymore.I know exercise helps in delaying progression.I am engaged in exercises,I bike,lift weights and box vigorously.It relieves symptoms temporarily,then you still need medications to enable better exercise.What sub type of PD do you have?

[JohnPepper in reply to GBAMIGOD]

Hi GBAMIGOD. Yes I have been completely off any Pd medication since 2002. I still shuffle when I am not concentrating on what I am doing. That is mainly indoors, when my mind is on all sorts of other things. If you contact me on my website - reverseparkinsons.net I will send you my videos and a lot of other useful articles on ways to overcome many of the Pd symptoms. I have learned how to use my conscious brain to control most of my movements, which is quite easy. I can go without the walking for about six months before my symptoms return to a level where I have to either do the fast walking or take medication. I would do anything to avoid taking medication.

[LAJ12345]

There is also benefits from changing to a sugar free , gluten free, mainly vegetable diet with lots of seeds, nuts, lentils and beans. Follow a diabetic type diet.

Try high dose thiamine, fish oil, ubiquinol, digestive enzymes, add Hardy’s daily essential nutrients, and Hardy’s greens and probiotics. Try all of these for 6 months with the exercise and see how much better you feel.

[Lionore in reply to LAJ12345]

Great advice! I don’t know about any brand names, but I do take B1 hcl, ubiquinol, NAC, broken cell algae, magnesium, Vitamin D3, tumeric and Citicoline. I eat fava beans and plain full fat yogurt daily and exercise most days. Mostly I don’t think about PD except when I’m due or overdue for my Sinemet. Four years post diagnosis and age 72 so maybe still in the honeymoon period, but I’ll take it. Could have a recurrence of cancer or get crushed by a falling tree or flying saucer.😎

[lempa_nik in reply to Lionore]

Lionore, I agree with most of your dietary recs, but wonder about the yogurt. In her observational study, Laurie Mischley finds that ice cream, yogurt, and cheese are associate with faster PD progression.

hindawi.com/journals/omcl/2...

You also might like to reconsider your selection of supplements in light of her data relating thereto:

hindawi.com/journals/omcl/2...

[faridaro in reply to lempa_nik]

Thanks for posting this information. Question - does it mean that oral glutathione is better than intranasal?

[lempa_nik in reply to faridaro]

That struck me, too. Though one would have expected the opposite, it sure looks that way. The oral glutathione registered a marked improvement in the PRO-PD score (reduction of 126 pts.) and reached a substantial level of statistical significance, i.e., p = 0.07. In fact, the intranasal glutathione even made the PRO-PD worse (increase of 63 pts.), but this is neither here nor there because the large p-value, p = 0.55, indicates that this could easily be the result of a chance fluctuation of the sample available. Maybe those nasal products are of a lower quality than the oral variety: though I'm not a doctor, it seems unlikely to me that delivery through the stomach or the nose would make the difference between benefit and harm.

[faridaro in reply to lempa_nik]

Thank you for looking into it - I was not sure if my interpretation was correct.

MJFox website states: "Although a pill would be ideal, oral glutathione is poorly absorbed from the digestive system and doesn’t get into the brain very well.

........ There are also other ways to give glutathione (intranasally) that are less invasive [compared to IV] and may be more effective. Early research efforts toward intranasal glutathione showed that it is safe, well tolerated and raises levels of glutathione in the brain (as seen on imaging scans). An MJFF-funded Phase IIb placebo-controlled trial did show mild benefit but because the placebo group also improved, the significance of these results is unclear." (2015)

So even though their results were inconclusive, I had an impression that nasal glutathione is more effective then oral.

[Casey953 in reply to faridaro]

We pwp respond very well to placebos which is why studies designed as though we react normally show very little positive results.I think we need longer trials that give the placebo effect time to wear off Search this site for info on glutathione. Am using amla powder to increase as hyper post by Chartrist

[Lionore in reply to lempa_nik]

Thanks, will check it out!!!

[Casey953 in reply to Lionore]

I am becoming fairly sure that exercise, conscious walking and diet are probably the best answer. Am planning to try the Terry Wahls diet _ see you tube. Her use of supple nets slowed her Ms. But eating paleo p.us Keto cured s symptoms. Don't k ow if it will hell pwp only seen anecdotal evidence. I try to not think abuut the future nowI have done what I can to prepare I.e. Ihave made provision for my dog in the event that I di e first. I have in place an advanced care plan and awill and a prepaid funeral plan. My dog is 3 years old this week so I try to do what I can to remain health so that I can outlive her,

[Erniediaz1018 in reply to lempa_nik]

Thank you for this info

[GBAMIGOD in reply to LAJ12345]

ThanksLAJ12345.

[movinngroovin1]

DBS-definately!

[GBAMIGOD in reply to movinngroovin1]

Hi movinngroovin1 could you share your experience,if you've had it done?How many years have you had DBS?Do you still use medications?Any serious side effects? Your response will be highly appreciated.

[Hidden]

DBS is a last resort when all else fails.

Diagnosed 2012

My regimen:

The positives: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed all motor and non-motor symptoms...

Entering my 7th year post diagnosis and have not fallen, not once, to the surprise of my neuro. Was seeing neuro every 6th month, last visit he set app one year. He said if needed we could do some changes earlier. He said my condition can change in as little time as one week.

New schedule, now I follow this regimen:

3 x day C/L 50-200 ER : 8 am, 2 pm, 8 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 2 pm 2g) Vitacost vitamin B1 (as thiamine HCL) 500mg, easy swallow capsules

B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:

(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)

Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".

Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.I

I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –

Doctor Costantini - “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine. An important detail”, adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.

Join my facebook group:

"parkinson's thiamine hcl"

facebook.com/groups/2322600... …

Parkinson's Relief, Questions and Answers

[GBAMIGOD in reply to Hidden]

Hi RoyProp, are you for DBS and medications, DBS alone or medications alone?

[etterus]

I am a 70 year old retired physical therapist with 20 years of PD non tremor symptoms... PIGD; postural instability gait disorder. I was a resident of Arizona when I was first diagnosed at the Mohamed Ali Center at Barrow’s Neuro institute in Phoenix. They recommend that I undergo DBS evaluation for because of my increasing problem with disabling foot dystonia.

Concurrently my son,a MD, took a position as an internal medicine hospitalist in Oregon. He researched the OHSU program and I was evaluated here with the same results.

[etterus in reply to etterus]

Sorry... I hit the send🤪

Since the two different evaluations were in agreement with the recommendation of the procedure I had to make a decision on which to proceed with. It was fairly easy to choose OHSU because of my thermal intolerance (az heat) and the full anesthesia technique that was not available in AZ. The other difference was the location of the electrode placement. DR Burchiel at OHSU chose the GPI over the STN.

Five years later I could not imagine where I would be without it. Prior to the surgery I was crawling to the bathroom to sit and pee 4-5 times a night and take another c-l dopa er due to foot dystonia. I was unable to drive mainly due to dyskinesia.

I’m currently taking Rytary and klonazapam for Parkinson’s only, plus HDT. I can still feel a loss of “altitude “ but it is a slow steady glide which I think is about all of us can expect until we develop significantly better meds and procedures.

In answer to your question... I would rate the DBS with the meds as equally successful. But it is dependent upon many different factors. Not an easy decision for many of us.

[GBAMIGOD in reply to etterus]

Thanks for sharing your experience etterus. I would like to assume that the complications from your PD medications triggered the need for the evaluation for DBS,according to your story and it has been highly beneficial to you in combination with medications.So for you there is nothing like being free from medications.I have read in some other forum,where people said getting DBS done made them eliminate medications completely.Sometimes it is confusing,because people react differently to therapies and the experts also do not have all the answers.I really do appreciate taken your time to share your story.

[GBAMIGOD]

Hi etterus Interesting,I have similar symptoms like you,but I am roughly 2 years post diagnosis,and just 53yrs old.So how are you doing so far post DBS?Please share,I am very much interested in learning from your experience.Also,you being a retired PT,you should be very familiar with different exercises beneficial to PD.

[etterus in reply to GBAMIGOD]

My practice was an orthopedic manual therapy clinic so I had not seen neurological problems for years. However in the first 10-15 years I had seen quite a few different conditions. Interestingly the school of thought in my early career regarding PD was that exercise was ineffective and a complete waist of time.

When I was first diagnosed I had the good fortune of participating in U of AZ research that was performed by Becky Farley PT PHD, the progenitor of the BIG program. I think it is the most researched and effective approach to date. That said I am of the opinion that there’s no absolutely perfect program for all. The evidence is overwhelming that “use it or lose it” is undeniably true for almost all aspects of functionality... there’s one caveat. To be effective exercise must be sustainable overtime and therefore enjoyable. If it’s perceived as punishment it will fail.

[GBAMIGOD in reply to etterus]

Hi etterus, how long have you had DBS surgery?Are you able to drive? Any side effects so far with DBS?I understand i it doesn't help balance and speech.Did your doctor tell you how long it will be beneficial to you?

[etterus in reply to GBAMIGOD]

I had it 4.5 years ago. I am driving but only when I am capable which is 70%. It has affected my speech negatively. There’s no way to predict how long it will benefit me that I know of.

[GBAMIGOD in reply to etterus]

Thanks for all your responses.You really helped me to know what to expect.Did you regret retiring from Manual PT that early?

[etterus in reply to GBAMIGOD]

Absolutely I would still be working at least part time if I could

[GBAMIGOD in reply to etterus]

It is pretty hard letting go what you love doing and have invested in so much that early.I am also a PT focused on geriatics,stopped working around the time I was diagnosed.I am still looking forward to see if I could do something less demanding,but struggles with apathy,fatigue and loss of confidence sometimes.I have kids in college.Kind of tough but won't give up.

[etterus in reply to GBAMIGOD]

I managed to keep my clinic going for 9years after dx but it became obvious that I was pushing the limits. It was like cutting off my leg.

I am of the opinion that the motor symptoms are not as disabling as the non motor which are basically 3 areas. Autonomic, psychological and sleep disorders. Managing these issues are much more difficult and are the ever changing never ending “ropadope - Mohamed Ali” torment that is the true dilemma we are facing.

[GBAMIGOD in reply to etterus]

You mean you fairly lost motor functions throughout the nine years that you kept on working,or you were dosing up on medications,or you worked with an assistant.Yes,you are absolutely right,the non motor symptoms are the killers,and not a lot is being done to research and treat these symptoms.

[etterus in reply to GBAMIGOD]

When I was first diagnosed at Phoenix I was told that I was probably on a slow trajectory which is still true 20 later. I started meds with azilect which was not FDA approved. Got it straight from Israel at $5 a pop. Then I started sinemet and slow got it up to one every 2 hours to control foot dystonia. When that failed I pursued DBS after I had retired. I did have a PTA running the Therex aspect and I did the manual work until my hands gave out. Had the practice for 22 years... solo.

[GBAMIGOD in reply to etterus]

Did anyone notice your symptoms at work,as regards the quality of your work?Or did you inform everyone,including your patients?

[etterus in reply to GBAMIGOD]

I didn’t have tremors so I did not appear abnormal. I told everyone from the medical community to new referrals. I even did a presentation to the local PD group on azilect.

[GBAMIGOD in reply to etterus]

Hi etterus, you realy inspire me.It was one of my patients that noticed I was not using my Lt hand during treatment and another one noticed,me struggling to put my Lt arm inside my jacket at closing time.It was during winter.I left work on temporary disability,not knowing how to tell everyone at work about my diagnosis.I told the very few who cared to call me that I have an orthopedic problem.Till now some patients don't know exactly why I quit.Have you done any form of speech therapy to see if you can improve your speech?

[etterus in reply to GBAMIGOD]

I’m willing to share my experience with you more directly if you like. There’s a method that allows for us to have a private thread here somewhere... at least there used to be I can’t seem to find it.

[Hikoi]

Its not either or. It is very rare to stop meds after dbs.

[GBAMIGOD in reply to Hikoi]

Thanks Hikoi.

[etterus]

I still need meds but I’m certain that I would have much more without my DBS.

[GBAMIGOD in reply to etterus]

Thanks again for your reply.

[lenamm]

I was very rare in getting PD sudden onset. I had a FUS surgery 7 months ago and am better now then I was the first day I had PD symptoms. Still take 200mg Sinemet ER a day.