DBS cancelled due to improvement of UDPRS measurement

[DragonMind]

Hello all,

I am new here and wanted to share my story. In Feb. 2018, my left foot started to drag and for many years before my left arm would not swing. I probably had this symptom for years and considered it my normal way of walking. It has been 7 years with increasing dosages of levodopa. Throughout this time, I have complemented my treatment with levadopa and dopamine agonist (I no longer take these as I experienced personality changes) with a series of non-traditional therapies including:

- energy meditation;

- permanent acupuncture on the ears;

- 45 day intensive Ayurveda treatment;

- exercise (at least 150 minutes a week);

- self healing spiritual exercises;

- microdosing ibogaine (with the supervision of a physician);

- microdosing ayahuasca;

- Chi Kung practice using Howard Shefke’s protocol.

- Cue 1

- I even developed some coordinated reset micro tactile stimulation gloves to desynchronize the beta waves in the brain of Parkinsons patients.

Of these, I continue meditation, Chi Kung and exercise although not as regularly as I should.

I suffer from dyskinesia which is quite debilitating and based on my dosage which was close to 1,000 mg a day went through all the tests required as a candidate for DBS.

Around 4 months ago, I showed up for my levodopa test after more than 14 hours without levodopa and my neurologist ran the UDPRS mobility symptoms test. I scored a 16 in this particular instance and after medication, I scorer a 5. The doctor was not convinced at this point I would be a good candidate given the mild Parkinsons results on the test. He sent me away and asked that I return after 2 months.

About 10 days ago, he ran the test again and this time I scored a 9 after more than 15 hours without the medication. I asked him if the test was subjective and he said that under no circumstance were these results subjective. He said that he could not recommend DBS with such a low score at this time and to continue doing what I was doing. He also lowered my dosage of medication by 40 percent. This is the second time he does so stating that the dyskinesia is a result of the medication.

I intend to go forward with high dosage thiamine, Chi Kung, meditation and exercise on a much more regular basis and see where this takes me.

In certain ways this condition has been a gift as it has made me change as a person holistically for the better. In certain other ways we all know the downsides.

Would love your thoughts on high dosage thiamine.

Thank you for reading. I am open to answer any questions if you have them.

[Boscoejean]

very interesting- I also think that even though the doctor says this test is not subjective that there can be variations in symptoms from one day to the next but two evaluations in a row might disprove that

[DragonMind in reply to Boscoejean]

I believe this as well however it was the same physician and the reduction was significant and not marginal. I will report my UDPRS score in the following appointment which should be in two weeks.

[DragonMind in reply to DragonMind]

I mean two months!

[Boscoejean]

Is Chi Kung similar to Qigong or is it something different?

[park_bear in reply to Boscoejean]

Same thing just different spelling

[DragonMind in reply to Boscoejean]

Its the same thing.

[Boscoejean]

so Cue1 is available where you live? We have been on the waiting list pretty much since it was invented but doesn't seem like there is much chance of it becoming available in the US

[DragonMind in reply to Boscoejean]

No, it is not available however I wrote to Lucy Jung, the CEO and arranged a test in Panama where I live with the Social Security System (the equivalent of the NHS in the UK). They were here for a week and provided me with a Cue 1. The results of the pilot they ran with two patients was significant and encouraging reducing UDPRS scores for two patients with advanced Parkinsons.

[janers in reply to Boscoejean]

what is Cue 1?

[DragonMind in reply to janers]

Its an innovative wearable device developed by Charco Neurotech out of the UK.

If you Google it you can get more information.

[saraoutwest]

do you think using the gloves have reversed your symptoms?

[DragonMind in reply to saraoutwest]

The gloves I produced here seemed to be working initially however they seemed to stop working after some time. This could be a placebo effect or something else. Perfecting the stimulation algorithm proved to be challenging although Dr. Peter Tass and his team at Stanford appear to be making some significant progress.

[BookLover19]

What is your high dose thiamine protocol please? What dose do you use, type of thiamine, and company name of supplement and way of administration (injection, oral, etc). THANK YOU!!!!

[DragonMind in reply to BookLover19]

I have not started this protocol however if you go on Youtube there are some videos regarding this. I would not recommend any new protocol without first consulting your doctor. I am not qualified to provide dosage information or advice.

[Boscoejean in reply to BookLover19]

Parkinson B1 Therapy group on facebook

facebook.com/groups/5121199...

[Edge999]

can you mention a bit on your diet?

[DragonMind in reply to Edge999]

I could improve my diet greatly as it is not really a model to follow. I try and eat a lot of berries, nuts, and the foods we all know are good for this condition. I forgot to mention that I take glutathione as well and am considering not consuming red meat anymore.

[Edge999 in reply to DragonMind]

More to the point have you been reducing sugar/carbs/grains/alcohol/seed oils during this time?

[DragonMind in reply to Edge999]

I have reduced sugar. I find alcohol is really damaging to any progress I have made so even though I will have a glass of wine or beer once in a while, these are the exception and not the rule. I love carbs (who does not?) and still consume them although try to cut down.

If you ask me, sugar and alcohol are the big ones. I still have work to do on the sugar.

[Dap1948]

Have you already started B1? I couldn’t see thiamine on your original list. That’s what high dose thiamine does when you find the right dose for you. Have you joined our Facebook group?

m.facebook.com/groups/parki...

[DragonMind in reply to Dap1948]

No, I have not yet tried B1 but intend to do so.

Thank you for sharing the facebook group.

[Jimmyalp]

Sound is not really convinced me regarding your case you have Parkinson's. Yet again everyone is different reacts medicine treatment. Because I got DBs done recently and I have been diagnosed with Parkinson last 8 years so far. Last time when I did levodopa challenge I could not last 2 hours without medication before dbs. I think you trying promote some sorts of traditional natural remedies

[DragonMind in reply to Jimmyalp]

Hey Jimmyalp,

Not promoting anything. Just sharing my experience. Each time medication is reduced, the adjustment period is very difficult.

Just like most people here, I have some good days and some bad days. My body reacts very well to Levodopa which is an important indicator of Parkinsons.

I only have the best wishes for everyone on this group and wish everyone well.

You will not find me promoting or selling anything on this group.

Have a great day!

[HolisticPeds]

congratulations! Your approach is working for you. That is wonderful! Please continue to keep us posted. It is so encouraging.

[DragonMind]

Let’s hope the improvement withstands the test of time and continues. Will keep you posted.

[Farooqji]

you have embarked on multiple endeavors simultaneously each one is a small project in itself. Its beyond normal PWP capacity. One item of your regimen is ayurvedik treatment. Its a very broad term which may include anything. Spiritual healing is another such thing. You could have told only the most effective practices/measures in brief

[DragonMind in reply to Farooqji]

For Ayurveda I went to India for 45 days and was 100% dedicated to this practice from 6 am to 6 pm. This is neither practical nor achievable for most people. Although I did see some improvements, maintaining the practice is not viable. These improvements could have come as a result of being under much less stress.

Regarding spiritual healing, this is very personal and consists mainly of a practice of meditation and self love. This has been a part of my journey from the very beginning and I believe it has contributed positively to improvements in both my attitude and outlook.

At this point in time, I would stick with:

1- Medication prescribed by my neurologist;

2- Chi Kung and meditation as part of my spiritual practice. I recommend you look up Howard Shiftke on Youtube;

3- Regulate your stress levels.

Hope this was helpful.

[janers]

great to hear I think reducing your medication will help with dyskinesia . Keep on keeping on! Best wishes

[DragonMind]

I believe it will as well. Actually, not sure who posted it however Dr. Jonathan Sackner Bernstein, has a contrarian view on the causes of Parkinsons stating that the cells in our brains have an excess of dopamine.

Will try and keep you posted. Reducing dosage of levodopa can be quite challenging to handle.

[Bhaktitoo]

West Coast esp of the US this treatment is available because there are ayurvedic schools/medical centers there. I was given two weeks with a solo practitioner in Grass Valley California , limited in scope, for intractable insomnia, brain fog from a then diagnosis of fibromyalgia and pots following tickborne illness, auto immune disease and migraine. Dietary prescriptions proved helpful and I have adopted them. In particular, I found the medicated oil based treatments (which you can continue as home care) especially beneficial. Messy--but gut and joint pain and swelling, migraine, and brain fog reduced. I would never have guessed I could go from one or two migraines a week ( meds made things worse) to one or none a month by rubbing medicated oil on my head feet and nostrils every night. Banyan Botanicals (Albuquerque NM)has extensive information about self-care practices and the theories they are based on on its website and makes quality products. (also practitioners on a school there were used to be) I buy herbs in bulk from them, And use their supplement lines, tweaked to fit my current needs. That said, the extensive treatment you can access in India is, I agree, impracticable to do on your own but ideal, not least because you can allow skilled others to support and care for you in ways that actually feel good to your body. Definitely stress reducing. And it's pricier outside India.

[DragonMind]

I am so happy for the success you have had with Ayurveda with your migraines. Definitely a win. I brought back some oils and natural medications from India and must admit, I did not follow through with the massages they prescribed. Thank you for sharing.

[GigiOf8]

Dyskinesia are in fact due to medications. Through different modalities I have come to that conclusion and only have tremors and some rigidity at this point. Diagnosed in 2019 I probably had it since 2008 and take carbidopa levodopa every two hours sometimes every hour. I am now looking at the FUS procedure Versus DBS. So far, I’m not finding complete relief of tremors from WHolistic practices. Just more peace of mind and dealing with them.

[DragonMind in reply to GigiOf8]

Thank you for sharing. All the best!