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

parkie13

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.

    Hospitalization Dangers Awareness

    Acquire an Aware Bag, before you need to have a stay at a hospital . https://silverliningsandparkinsons.home.blog/2019/02/15/aware-in-care/ the link tells you how t0o get your free Aware In Care bag and what all is included in the bag

    Parkinson’s Symptoms Awareness

    We must place this information into the proper hands!

    We must relieve the caregiver’s burden of the need to teach hospitals and first responders, especially during a difficult and stressful time.

    Hospitalizations Dangers… pbh-org.com/?fbclid=IwAR2zg…

    Parkinson’s CARE Awareness is a cause needed within the Parkinson’s community around the world. Those who CARE for those with Parkinson’s need more than the typical Parkinson’s information. They need education and support in order for them to help manage the disease and its impact, the collateral damage. These carers are often the ones who have the information and knowledge needed by the medical and pharmaceutical world.

    PBH-ORG.COM’s mission, to “provide those with Parkinson’s a higher level of care”, is designed to help their care person, family, friends and community through emotional support, education and programs. Our research has shown, educated, and supported carers profoundly impact the quality of life for their husband or loved one with Parkinson’s. The simple act of removing even a small part of the stress in the caregivers life can create a more positive and healthier surrounding for the one they care for.

    A shared with me by a fellow PwP

    Being proactive

    In my May 28th post I mentioned that I ordered a stylish Helmet/hat.

    I wore the helmet hat to two graduations. Then, when I was going into the hospital to check on a sister I minister to, having received a message that she had fallen and was being admitted to the hospital, I didn’t think to wear the helmet.

    As I was going toward the front entrance I stubbed my toe on a rise in the cement, and scared a lot of people, including myself. But the Lord blessed me, because I was enabled to regain my balance with some fast foot work. I’m sure it wasn’t a pretty dance, because several people asked me if I was alright.

    As I was falling forward, I thought, “I’m going to faceplant on the cement and I should have w0rn my helmet!” Thankfully disaster was averted. As I have been consuming the New Eden twice a day, I have noticed when I am walking about, my arms have begun to swing, like a non-Parkinsonian’s arms would swing . Whereas, with typical Parkinson’s symptom, previously my arms had hung down at my sides when I walked with no swing at all. I have to assume it has also been enabling me to move my feet faster, thus righting my error.

    Hugs n elbow bumps

    I acquired the New Eden which I mentioned in a previous post and for the first month I used 1 scoop twice a day. Then I learned that I was taking a maintenance serving, and I should increase the amount I consumed if I had a health challenge, IF I wanted to see noticeable improvement towards normal. So I doubled up 2 scoops twice or thrice a day since then.

    Then several weeks ago, I had a fall. I was pulling a hose across the front of the home when the hose snagged. I was feeling so well, I guess I was going faster than I should, because when the hose snagged, suddenly stopping me, I fell backwards and struck my back and my spine high between my shoulder blades on a cement boy sitting on a pedestal, dislodging it from the soil. I expected to have some massive bruising. I credit the new product with the fact that I had very mild bruising and the soreness and puffiness was totally gone from my spine a short 4 or 5 days after I fell.

    A fellow PD friend on a Parkinson’s chat page posted a photo of herself wearing her head gear ; stating that she has fallen so many times, breaking an arm once. She knew it is just a matter of time before she hits her head on something as she is falling, so she decided to be proactive. The cap she was modeling made me think of an early day leather flight helmet.

    After my encounter with the stone figurine I decided to go on line and search for protective head wear, hoping to find something a bit more attractive. RibCap is the company I found that I felt had the most attractive helmets. I saw two styles that I liked. One looks like a knitted stocking cap…. Much to warm for our Florida heat. The other one Looks like a base ball cap.. so I thought it would be a wiser selection But when I went back to the site, thinking I might order one, I stumbled onto a third style set to be coming available on April 30th and I thought it looked more like something I would wear in the garden, so I ordered one. But I had to wait because, due to Covid, they had not been able to acquire some of the material they need to be able to produce the helmets

    I’ve had a couple more falls since I placed the order… nothing more than my dignity broken… but I received notice that my hat has left Belgium and my hat/helmet should be here by 4th of June. Maybe I’ll share a photo with me modeling it.

    This image has an empty alt attribute; its file name is 86F77D4D-0C01-4362-B936-0F91588F381F.jpeg

    On a Quest…


       I have been on a quest to find healthy alternatives for therapy.  And I feel pretty confident that Ascend Sciences is going to be providing products that hold a lot of promise.  But I’d like to know what other people think of them, too, so I’d really appreciate it if you could look at it and listen to the links in this blog post and then let me know what you think.’

       I typed in a previous post about the microcurrent Frequencies that will be in the Curie™ Unit. I read a book called The Resonance Effect — Frequency Specific Microcurrent. She explained how there are different frequencies in the air which carry sound waves and light waves from  the station into your home… and  the key fob sends a frequency to unlock a person’s car…   Likewise our bodies have unique frequencies.  Additionally each cell has its own frequency, so like switching TV channel, the technology has been refined to introduce microcurrents into the body with specific frequencies enabling a person to find relief from pain and optimize their restoration to health.    

            Then I learned about a nutritional supplement that my body has responded to, very well, but it was pretty expensive. please listen to the interview]   Then a cool thing happened.  I learned that Dr. Reg McDaniel’s son (also Reg McDaniel Jr.).has pooled resources with his friends and is putting a new company together.  Dr. Reg McDaniel has made some changes to the formula making an even better version,  Q800+ TM . and with their five million dollar business plan allows them to obtain the key ingredients from the same providers that were in the original product at significantly lower rates.  Whereas Dr. McDaniels has been selling his product by word of mouth, through a radio show in Texas, Reg has a different marketing approach.  So I will be enabled to obtain my product for a much better price .. 

    They are having zoom meetings every Thursday at 7o’clock in Utah (9 at night in FL)  If you are interested in knowing more and want to share this opportunity with someone else, go for it   To receive the zoom link, just go to the Pre Purchase page on the website and put in your name and email and submit it and you will receive a confirmation email. and you may expect an email the next Wednesday from Ascend Sciences inviting you to log into the zoom meeting on Thursday by clicking on the provided link.

    .For an invitation to enroll, please email me and I will be glad to assist you grandma.connection@gmail.com . There is no fee for enrolling during pre-launch. After launch people will be required to pay $35. sign up fee.

    At the last meeting I attended, Dr. McDaniel spoke about some of the ingredients in the Q800+  Very informative..  The product is slightly sweet and easy to consume.  The 800 is in reference to the fact that this product has been verified to improve over 800 deviations from normal. i.e. Optimal health.

    Melatonin

    Parkinson’s Disease (PD) and Melatonin

    Previously we discussed how melatonin can be beneficial for people with Parkinson’s disease (PwP) at a dose as low as 10 mg / day. Recent studies are confirming that Parkinson’s disease (PD) is a risk factor for cardiovascular disease (CVD). The relationship is not yet fully understood, but it is now clear that CVD is something that PwP need to be aware of and should be taking steps to try and prevent CVD from starting or advancing. Obviously CVD is problematic in other health issues as well as in the general public, but I will discuss how melatonin may be able to reduce the risk of CVD in PwP as well as in people in general.

    https://pubmed.ncbi.nlm.nih.gov/32002576/

    The following meta analyses discusses how PwP are at higher risk for CVD even though it was previously speculated that PwP were at lower risk because they present with fewer vascular risk factors for CVD and smoke less. Smoking is a risk factor for CVD. If your doctor, neurologist, movement disorder specialist or other healthcare professional has not informed you of this risk factor for CVD, now you know and can take steps to try and prevent or lessen your chances for getting CVD

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6130276/

    We have melatonin in 3 mg. Which helps Rusty (the neurotic dog) calm down during thunder storms or when neighbor’s set off fireworks.

    Although these excerpts I shared are more about CVD, I suspect 10 mg. melatonin might be worth a try for calming anxiety or provide relief for sleep issues which are frequently problems for PwP.

    Who says “You Can’t”

    Who says ‘You can’t teach an old dog a new trick? I suppose my senior citizen status qualifies me as old … But I learned something this past week.

    Due to my persistent drooling condition, the corners of my mouth were cracked and a very raw line had formed and descended down from both corners of my mouth, extending nearly 2/3rds of an inch down on each side of my chin. When I opened my mouth wide enough to insert my dentures the corners of my mouth would crack and bleed. It had become unsightly and made me grateful for being able to hide behind my ‘covid mask’.

    What I learned from a grandson this past week, is that simply by applying a hydrocortisone cream onto the sore places morning and night, and in between times… the soreness can be held away. Of course the drooling will continue but I celebrate a small victory.

    Negative Mindset

    We only live once

    ————————————

    Positive Mindset

    We only die once. We live every day.

    Conversation on ideation

    Please read this discussion and offer your own thoughts. @mckchart said :

    I asked the same question (why me ) but get one thing straight it’s not a death sentence so be very positive and make sure you don’t let it get you down ,many a famous person has thrown in the towel and done the unthinkable ,just make sure you have someone to talk to when things get on top of you …….Parkinson’s educator ( feel free to contact me )

    ……………………………… Here is @pdpatient’s response :

    @mckchart, the “unthinkable” was excellently phrased by you and I couldn’t have said it better. However, you have inadvertently opened the proverbial pandoras box for some PwP’s such as me.

    I was formally diagnosed in the early summer of 2014 by an MDS af the University of Columbia, NYC. I fell into a rut and things went ft bad to worse and I was contemplating the “unthinkable,” which I really hadn’t thought through. My son was 14 and my daughter was 9 and I was the only breadwinner of the family. My only concern for my family was that I would need to die in such a way that it could not be labeled as a suicide. I had my policy long enough, but I could not trust in the system to honor the payout for a suicide.

    Around that time, my most favorite movie actor – Robin Williams had also received a bed diagnosis . I was devastated. Next thing I heard, he had committed suicide. Oops. I have said the “unthinkable,” but it is time for us to face the monster head on and find a way to make this widely known to PwP’s, newly diagnosed PwP’s and their families.

    Thankfully, my family came to my rescue and I agreed to take powerful medications that brought me back from the brink. I survived and my family is doing well still. I am grateful to God and the Universe for everything that I have been fortunate to receive despite my perception that others are more deserving than I. After all there are almost 8 billion people on this planet and I am only one of the lucky ones that is still alive

    I learned along the way that life doesn’t end with a Parkinson’s diagnosis. Every doctor that I have met has told me that I was not facing a death sentence. True. However, what they don’t say is that the possibility of suicide in newly diagnosed PwP’s is extremely high. This is an existential problem that is overwhelming in its impact and understated in its awareness.

    Unfortunately, I am still haunted by the ghosts of this seemingly “easy way out” or so as it seems. It is a path chosen by many and it rears its ugly head once in a while when the symptoms get worse.

    This is a topic that is ripe for involved and in depth discussion.

    …………………………… P Bear’s response

    I do not expect to do myself in over Parkinson’s. However, at one time I had an uncontrolled chronic pain condition that did cause suicidal ideation.

    Each person’s circumstances are unique. It is important to tend to our responsibilities. That said, if someone’s health situation is such that they deem it fitting and proper to leave, it is not my place pass judgment on that decision.

    I get that your mention of income is in the context of why it was appropriate for you to stay. However, income is not a measure of worthiness, and a more modest description would be preferable in my opinion.

    ……………………………. Sharon provided “

    You might want to refer to this Korean study found in science direct.

    sciencedirect.com/science/a…

    “Suicide risk in PD patients is approximately 2 times higher than that in the general population. Psychiatric disorders, and also L-dopa medication need further attention with respect to suicide.”

    Another good overview can be found in Neuropsychiatry Review

    jnnp.bmj.com/content/90/7/822

    “Suicide is consistently listed among the top 10 causes of death in the USA, with rates steadily climbing throughout the 21st century and reaching an annual rate of 13.4 deaths per 100 000 in 2016.6 7 It is a dominant cause of mortality among the elderly and persons with neurological diseases including stroke,9 Huntington’s disease10 and epilepsy.”

    ” Depression in particular is common in PD, with one meta-analysis suggesting that 17% of PwP suffer from major depressive disorder and 35% suffer from clinically significant depressive symptoms.”

    In contrast, suicide is not a major cause of PD death (which are falls and pneumonia.)