August 2021 – Standing up to Parkinson's

B1 – High Dose Thiamine Therapy

I first wrote about the B1 High dose Thiamine on January 31, 2020.

https://silverliningsandparkinsons.home.blog/2020/01/31/another-stone-to-turn-over/

Then after researching more, I posted these findings on Feb 26th

:https://silverliningsandparkinsons.home.blog/2020/02/26/flops-and-flips/

I have documented progress I have seen in my personal life on my ‘Transparency’ Page.

I first learned about the B1 High dose Thiamine therapy through a post on HealthUnlockled . In a post by a gentleman with the User ID RoyProp. I learned about Dr. Costantini who was still functioning heading up the research in Italy. To learn about the research go to Facebook Parkinson’s thiamine hcl

If you click on ‘More’ and then ‘Files’ there were links to documents showing his research findings, but since Covid took Dr. Costantini away from us. I think the links may have been taken down. So I’m including one of the documents I cut and pasted:

“benefits are described by many members who are using or testing B-1”

By HU member ‘easily’. Carried over from healthunlocked.com/parkinsonsmovement

“I decided to go through the thread and list each benefit that has been mentioned by this group of B-1 testers and users from the HU forum.”

“Here is the list of symptoms that members have reported as being “reduced” by varying degrees to as low as zero or improved very significantly on the HU forum. About 95% of the list was compiled directly from the “who is taking thiamine” thread and the other 5% from other posts on the forum. A List of Improved Symptoms Reported From The Dr. Costantini B-1 Protocol Users And Testers On This Forum:

1. Hope for the future improved

2. Brain fog / focus / clarity

3. Gait improved to as great as normal

4. Arm swing when walking returned to normal

5. Shuffling reduced or eliminated

6. Balance / stability much improved

7. Tremor of hands, arms, legs, fingers, toes and feet reduced to as low as zero

8. Energy level increased

9. Handwriting / micrographia / typing / mouse usage / improvement and increased speed also for all three

10. Stamina / endurance much improved

11. Constipation significantly reduced or eliminated

12. Frustration much reduced

13. Muscle cramps /spasms / charley horse reduced or eliminated

14. Pain / all areas including neck, back, arms, legs, feet, etc. reduced or eliminated

15. Head tremor reduced or eliminated

16. Bradykinesia / slow motion reduced or eliminated

17. Drooling reduced or eliminated

18. Mouth and jaw tremor reduced or eliminated

19. Hallucinations reduced or eliminated

20. Improved voice volume, projection and clarity

21. Decreased use of multiple forms of levodopa and other PD meds

22. Reduced stiffness / rigidity

23. Improved sleep through the night and better quality sleep

24. Improved ability to taste and smell or normalized

25. A general feeling of well being

26. Going from not being able to walk to being able to walk

27. Stooped posture improved

28. Coordination improved

29. Body and joint aches (all areas) improved or eliminated

30. Depression reduced or eliminated

31. Use of hands to do things that were not previously possible before starting B-1

32. More fluid movements

33. Dystonia down to as low as zero

34. Apathy reduced or eliminated

35.Turning in bed and getting in and out of bed.

36. Anxiety reduced or eliminated

37. Facial expression / masked face improved to normalized

38. Fatigue reduced

39. Concentration improved

40. Mood improved

41. On time increased / off time decreased to as low as zero

42. No longer a need to always be grabbing onto things to maintain balance

43. Improved memory

44. Ability to snap fingers again

45. Vision acuity increase

46. Twitching reduced or eliminated

47. Mood swings reduced

48. Willingness to socialize / more outgoing

49. Walking speed increased with stability and ability to go greater distances

50. Strength in legs improved

51. Freezing reduced or eliminated

52. Dragging of feet or legs reduced or eliminated

53. Dyskinesia reduced as low as zero

54. UPDRS score reductions of 40% or better

55. Push Test improvements to quicker balance response

56. Hopelessness reversed

57. Physical flexibility improved

58. Improvement of gut problems

59. Improvement to a state better than when originally diagnosed with PD

60. Being able to continue working instead of forced retirement or not being able to work anymore.

61. Being able to get up from a seated position unassisted and easily

62. Being able to traverse stairs normally again or improved

63. Urinary incontinence and urgency down to as low as zero

64. Significant slowing or halting of disease progression

65. Increased hand strength

66. Improved swallowing ability and confidence in swallowing

67. Improved driving comfort and ease of entry and exit from the vehicle

68. Feeling much more comfortable in your own body

69. Feeling as though you now have a future to look forward to instead of no future except declining health and abilities

70. Toe curling relief

71. Ability to exercise more with greater ease

72. Increased productivity throughout the day

73. Ability to do things after work into the night instead of going home and taking a nap or going to bed for the night

74. Ability to interact with others more effectively in a work environment

75. Quicker recovery from hard workouts, walking, jogging and exercise

76. A return of lost creativity

77. Ability to do without a walker or cane

78. Reduction in inflammation

79. Ability to sometimes forget that you have PD

80. Smiling again and a more positive attitude noticed by people around you

“Dr. Costantini’s favorite from this list is #79. He said this is what he and his team is working toward with all of his patients and that is a very nice goal!

What follows is some testimonials from the HealthUnlocked

My regimen: by Roy Prop & then others…

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:

2 x day C/L 50-200 ER : 8 am, 5 pm. Because it is ER, I take with or w/o food.

2 x day (8 am 2g, and 5 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 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

Guide:

1. Read page, About, open links.,

2. On Files page, open B1 FAQ document.

3. On Files page, download First Appointment document, answer and submit.

4. read Announcements

SUCCESS STORY

Hi!

I understand you are a little reluctant to start a higher dose (I was ,too!) but 100 – 200 mg may not make a difference. Based on your size (height x weight) i would start with 500 mg in the morning (before 10pm) and 500 mg in the afternoon (before 4 pm). I started with 2x 1g and now I’m at 2×0.5 g. I saw partial results after a week and full results after a month. You can gradually increase from 2×0.1 to 2×0.5 or even 2x1g but probably will take longer to see results. I think for you the best dose would be 2×0.5 which you can gradually reach in time. You need also to drink a lot of water to eliminate it. I take it from March 2018; the single symptom left is some tremor in RH. All the others are gone. Usually I take it on empty stomach with a piece of dark chocolate. Avoid citrus juices soon before and after taking it.

Good luck!

You can stop it for 2-3 weeks and find out. If you get worse, you can always go back on it.Reply (4)Report

parkie136 months ago

For me it has made a tremendous difference, my balance , my driving, being able to sit up in bed and turn over in bed. Just recently, I stopped taking it for about three weeks and I noticed my balance was getting bed again. I restarted it at one pill of 500 mg a day and I’m just about back to the way I was before. With me thiamine HCL raises my blood pressure so that is why I stopped for a while.

Jennyjenny26 months ago

I have been going to post for some time about my husband’s symptoms improving since B1, but wanted to find the correct dose first. He had also been taking 150mg CL daily (originally 300mg but reduced by using mucuna) since April ‘18, but he was still severely constipated (having once been hospitalized), had a foggy head, his balance wasn’t great, had difficulty swallowing, anxiety… the list goes on.

Dr C started him on 500mg x 2 in Jan ‘19. This was based on him being 6 ft tall, 68 kgs and 60 years old. After much experimentation, we have settled on 400mg x 2, and taking a break for one day every 10-14 days, or when my husband has an unrestful night sleeping.

Things that have vastly improved are:

No more constipation – this resolved after 3 days on B1

No more foggy head – that cleared after 6 weeks

Balance – slowly improved

Swallowing – at last review in May ‘19, the speech pathologist noted his mouth was no longer drooping on one side, swallowing and tongue functions were normal and he didn’t present like someone who has PD.

Anxiety – this has taken a good 6 months to get where he is, and there’s still room for improvement, but so much better.

………………………………………………….

chartistin reply to CapSage4 months ago

Dr. Costantini has said it is fine to work your way up from lower dosing to higher dosing as a viable option to starting higher and seeing how you respond and then adjusting the dose accordingly based on your initial responses. Your method is much less likely to cause significant symptom deterioration as can sometimes happen if your first doses are too high. Working up from low to high maybe a bit slower, but if you are a B-1 responder, as the majority are, you’re going to be taking B-1 for life so there is plenty of time to adjust the dose as needed.

Art

I KNOW this was a long blog entry… Congratulations if you stuck it out to the end.

Sue

Support group

A support group is just that… Support! You can’t get the support you desire if all you do is attend and observe in silence! You get out of it, what you give in to it.” I kept hearing, ‘ Find a support Group.’ and I actually tried a group once but the exercises they had us do were not realistic. That is when I realized I had lost the ability to skip.

Recently, the MJFF started a Parkinson’s Buddy Network which I joined, and the very first person I reached out to, told me about a support group which meets every Wednesday in the villages, at a rec center just 15 minutes away from where we live., I have attended four times now, and I love it. The leaders always have something to share with the participants. This week it was providing information on specific studies that are currently enrolling PD patients to participate in in Gainsville. When the group have convened, they begin by participation in a drumming activity. They stand and pledge allegiance to the Flag. Then we are led in a ten minute sitting stretching routine and then we dance for around 40 minutes. Two or three ladies demonstrate the planned choreography to go with each song.. We have done the rhumba, and learned a line dance, Marches, and songs like YMCA incorporating the moves to spell. And they work on voices: shouting, singing loudly and counting, while dancing. This week, they had 16 chairs set up 1/2 on each side of a volly net. So After dancing we transitioned to playing chair volley ball with beach balls. The competitive spirit was lifting many of us off our chairs. No score was kept and they had two balls so while the observers, mostly care givers, were retrieving errant balls the second ball would be put in play.

I continue to learn new things. I feel gratitude for my many blessings.

The support group has a weekly newsletter, and I have learned they have 3 meetings each week plus a golf game one morning a week. One of the meetings is stretching, exercising, Big & Loud… held on Sunday . so we won’t be participating in it, or playing golf. The Monday one is for caregivers.

From the Newsletter: The importance of the 3 key benefits of Support Groups!

Improving understanding of a disease and your own experience with it.

Getting practical feedback and treatment options.

Gaining a sense of empowerment, control, or hope!

I don’t remember where I found this sales pitch for Support groups:

“It is important that those of us with Parkinson’s learn as much about this disease as possible. We use this knowledge not in helping to find a cure but in helping us cope as we move about in our daily lives. Once we have found some new knowledge. We should not keep it to ourselves. If we have found a way to cope with the disease we owe it to others to pass this information on. Attending support groups is a way that we can do this. A way that we can find out, that we are not alone!”

“I have been lucky to attend various support groups and have had the privilege to meet up with other Parkies across the country. One thing jumps out at me, those who interact in these meetings seem to be coping better with the disease, both mentally and physically, than those that don’t! They interact better with Parkies and Non Parkies a like! As hard as it may be, you must interact! If you have trouble expressing yourself to those of us with Parkinson’s, how hard must it be to express yourself to those that don’t? People like friends and family and especially your caregiver and medical support team! The more you partake in the support group, the more you can learn about different techniques in how to live with Parkinson’s and easier relate your disease to others. By sharing with others, you will be surprised to find out just how much in common you have. You will find out that what you are going through is not new. Somebody has or is going through it as well. Your participation will most likely encourage others to interact. By doing this, conversations start to flow. New ideas and solutions will seem to come out of nowhere! This is what you were probably looking for when you opted to attend a support group in the first place! This knowledge is a stress reliever!”

Pisa Syndrome

‘Not long after I received my diagnosis, I first heard the label ‘Pisa Syndrome’ as I sat in the eye doctors exam chair. It had been confirmed, the reason I still couldn’t see to read with my new bifocals was because I needed Prism to be able to read. The doctor says I am seeing double…I am bothered by his declaration. because I don’t see two distinct things. It is just that things are so blurry that a magnifying glass is of no help. Thus, I learn two new phrases: ‘convergence insufficiency’ &’Pisa Syndrome.’

The doctor and his assistant were commenting how I had the lean to one side. They said they knew they went together, but they weren’t sure which one caused the other

Since then, I have had three separate prescriptions for prism lenses. Having cataracts removed allowed me to quit the juggling act with two pair of glasses. If I tried to walk with the prisms on, it would cause me to stumble. Well, it still does make me stumble, but I don’t have too fumble for the other glasses

I found and article from The Lancet / Neurology

Pisa syndrome is defined as a reversible lateral bending of the trunk with a tendency to lean to one side. It is a frequent and often disabling complication of Parkinson’s disease, and has also been described in several atypical forms of parkinsonism …….. Although no consistent diagnostic criteria for Pisa syndrome are available, most investigations have adopted an arbitrary cutoff of at least 10° of lateral flexion for the diagnosis of the syndrome. Pathophysiological mechanisms underlying Pisa syndrome have not been fully explained. One hypothesis emphasizes central mechanisms, whereby Pisa syndrome is thought to be caused by alterations in sensory–motor integration pathways; by contrast, a peripheral hypothesis emphasizes the role of anatomical changes in the musculoskeletal system………

………………………………………

PD is the second most common neurodegenerative disease and is characterized by bradykinesia, resting tremor, rigidity, and postural instability.²⁴ It is a progressive, lifelong, and so far incurable disorder causing significant reduction of quality of life and increasing health care burden. Besides aforementioned classical motor symptoms, additional aggravating conditions include postural abnormalities, which are quite common in this population. According to the results of a retrospective observational study, a third of patients with PD had a deformity of their limbs, neck, or trunk. Parkinson described distinctive stooped or bent posture of patients with PD. Nevertheless, significant proportion of patients exhibit more severe postural abnormalities or spinal alignment, leading to significant disability. These severe deformities include PS, camptocormia, scoliosis, and antecollis. It is noteworthy that most of the patients present with a combination of postural deformities. The underlying pathophysiology of these deformities is largely unknown, and their management remains a challenge/

Pathophysiology

The pathophysiological mechanisms underlying PS in PD patients have not been fully explained. Two different hypotheses have been proposed: 1) central hypothesis consider PS as a consequence of basal ganglia dysfunction along with altered sensory–motor integration, and possibly exacerbation by dopaminergic treatment; 2) according to the peripheral hypothesis, PS occurs primarily due to an alteration of the musculoskeletal system, such as myopathy of the paraspinal muscles and soft tissue changes (Figure 1).^27,32

Postural control depends on vestibular, visual, and somatosensory information. For proper postural control, all these components should act in highly harmonized, synchronous, and orchestral manner. Balance impairment in PD has recently been related to altered sensory–motor integration processing.⁴² Proprioception provides highly accurate information that helps to maintain body verticality. Several studies confirmed abnormality in proprioceptive function in PD patients. Vaugoyeau and Azulay⁴³ showed that PD patients, unlike healthy subjects, were unable to maintain the vertical trunk orientation without visual compensation and were following the oscillations of the supporting platform, whereas the control subjects kept their body upright when deprived of visual cues and vestibular information. Perception of verticality is essential for postural control. Pereira et al⁴⁴ showed that perception of verticality is affected in PD patients. This abnormal vertical perception together with disturbed processing of graviceptive pathways is associated with postural instability. Based on these results, Scocco et al⁴⁵ investigated subjective visual verticality in PD patients with and without PS, and compared them with healthy controls. They found that the subjective visual verticality was altered in PD patients with and without PS when compared to healthy controls. The authors concluded that altered subjective visual verticality cannot be explained by intrinsic lateral deviation in PS patients, yet it must be secondary to either primary perceptual dysfunction or alterations of internal models of verticality. Until recently, it was thought that vestibular dysfunction is not involved in the pathogenesis of postural deformities affecting PD patients.⁴⁶ However, recent investigation by Vitale et al⁴⁷ refuted this hypothesis. They evaluated vestibular function in eleven PD patients with lateral trunk flexion and in eleven age-, sex-, and disease duration-matched patients without lateral trunk flexion. A peripheral, unilateral vestibular hypofunction was identified in all patients with lateral trunk flexion. The vestibular hypofunction was ipsilateral to the leaning side and contralateral to the most affected parkinsonian side in all the patients. In the control group, seven subjects had no vestibular signs and four subjects had unilateral vestibular hypofunction without clinically evident lateral trunk flexion. Interestingly, two of the latter patients subsequently developed lateral trunk flexion ipsilateral to the vestibular deficit and contralateral to the side most affected by PD.

Diagnosis and clinical presentation

There is no consensus on the diagnostic criteria for PS. Initially, Bonanni et al²⁹ proposed the following definition for lateral axial dystonia: more than 15° lateral flexion of the trunk, increasing during walking, not present when supine, and in the absence of any mechanical restriction to trunk movement (ie, degenerative spinal disease), with continuous electromyographic activity in the lumbar paraspinal muscles ipsilateral to the bending side. Doherty et al²⁷ deviated from definition by Bonanni et al²⁹ and proposed that a diagnosis of PS requires at least 10° lateral flexion, which can be completely alleviated by passive mobilization or lying in a supine position. A reason for this deviation was that the pathophysiological mechanism of PS in PD patients may not be completely dystonic and should not require electrophysiological studies to define it.

PS can develop in acute (rapid deterioration within few days or weeks), subacute (followed by rapid deterioration over months), and chronic fashion (insidious at first with gradual worsening).^15,54,55 Early recognition of PS represents mainstay of the treatment because chronic forms are often resistant to therapy. Most of the PD patients with PS are not aware of lateral trunk deviation in the early stage.³⁵ At the beginning, only a slight tendency to lean on side can be observed while patient is sitting, with worsening during walking. A special phenomenon is “veering gait”, which denotes progressive deviation toward one side when patient is walking forward and backward with eyes closed. In advance stage, patients often experience debilitating pain, dyspnea, or unsteadiness leading to falls.

Probably, the most important thing when dealing with PS in PD patients is early recognition of this rare and incapacitating symptom, because appropriate management in acute or subacute phase can prevent chronic irreversible state.