4/16 I think I am deffinitly on the right track… my drooling has slowed considerably. I’ve quit carrying a cloth around with me to dab at the corners of my mouth. Only time I’ve noticed any drooling was when I was concentrating very hard on doing a task, I felt a drop fall from my mouth. Big improvement!!
If you are a facebook user, I’d like to share a Q & A done about the LuminAloe.. and then if you’d like to know more PLEASE reach out to me and we can make it happen for you.
1/23 Two weeks earlier a lab drew my blood samples This past Tuesday I met with my PC Doctor to review the lab results. Before he had looked at the results, I told him I had begun using this new product. He asked me what it was, I explained a little bit and told him my arms have begun to swing again! This was a pretty big deal. Then, as he looked at the results, across the board all of the numbers had moved to the optimal range. When he got to cholesterol, he said “Wow! That Cholesterol Care I’ve had you taking must have really kicked in! Your bad cholesterol has gone way down… and your good cholesterol has gone way up!” To which I responded, “Or it could be the more comprehensive nutrition I have been using, because you’ve had me on that product for quite a while.” He proceeded to look at the rest of the report, and then said, “I’d like to know more about the supplement. If it can do that for you, maybe it can help some of my other patients!”
1/16 : The LuminAloe has recently been released. (Previously named Q800+) I am about through my 1st tub of the product. Since using it, I haven’t had any more falls, and my gag reflex has returned. I am looking forward to when I can cease to drool.”
NOTE: I started using The previous version … New Eden on 4/24/2021
9/19 Prior to More Comprehensive Nutrition my arms would just hang at my side as I walked. But in about the last month I have noticed the swing has returned to my arms when I am going into a store or even around the house or going from house to car.
9/19 “The next week, I was feeling so good, I was working outside and decided to pull a hose around to water a bush … and as I was pulling hard, the hose snagged on something and it stopped me so suddenly that it caused me to fall backwards. Thankfully, I had the helmet on, because I hit the cement statue of a child holding a fishing pole, so hard that I dislodged the pedestal from the soil and knocked the child off of the pedestal. Although my shoulder was sore and where the cement had struck my spine was bruised and swollen,by the third day, the pain was all gone, the swelling had receded and it was as if it had never happened. Again I thanked the Lord for leading me to this more comprehensive nutrition
9/19 I had purchased a helmet to protect my head as I had continued to fall. But I forgot to put it on before going to the hospital to visit a sister who had fallen and injured her back. As I was stepping from the curb onto the sidewalk, I didn’t get my foot raised quite high enough, causing me to stumble. The thought flashed through my mind..(You didn’t put the helmet on and now you are going to face plant on the cement.) But miraculously, I was able to move my feet quickly enough that I was enabled to recover my footing. I’m sure it wasn’t a pretty dance, as several people came to make sure I was ok. I attributed my rescue to be by the grace of God and the improved comprehensive nutrition of the New Eden product I had begun to consume ”
“8/6 When I fall, it is because I am trying to do something. A person has to be active some times. I don’t feel faint. But this week, I was in my walking shoe, working on preparing lunch and my shoe got snagged on nothing and I went down, striking my head on the edge of the desk on my way down. Sadly I have to admit the helmet provided no protection. impact was about 1-1/2 ” behind my ear and 1-1/2″ above the hair line, and just under the band of the helmet. The good news is not even a break in the skin. just a little bruising. John says he thinks I should get the cane back out, but I predict that when I next go down, I won’t have it in the right hand to catch myself
7/6 I saw the neurologist today. I told him the hat I was wearing was a helmet. His reaction shocked me. He said, ” NO! Don’t rely on a helmet. I’m going to write a prescription for you to get a walker… And if you start to feel faint, you can sit on it.”
6/11 I have continued to consume the New Eden taking two scoops three times a day. And I have been naughty and not been exercising. But I feel energized and I find myself swinging my arms when I walk without having to make a conscious effort.! My balance is still better than it was for a while, but I’ve had too many ‘close to falling’ incidents. So have chosen to be proactive and purchased head gear for protection.
4/24/21 I acquired the New Eden … precurser to the Q800+ https://silverliningsandparkinsons.home.blog/2021/05/28/hugs-n-elbow-bumps/
To learn about the Q800+ https://ascendsciences.com/z?r=xJFdmR
2/10/21 I have added Butyrex, a short chain fatty acid, to my protocol. When I did the keto diet, I saw the importance of fermented food for our gut health. Since I don’t eat much fermented food, the Butyric acid seems like a good alternative https://silverliningsandparkinsons.home.blog/2021/02/10/butyr ic-acid/
1/18/ As I investigated the New Eden and Glyconutrients, I found out about Mannitol. I suspect I will like the New Eden best, because their source is a large Aloe plant from So. America.
1/13/2021 In the past 2 1/2 months I have experienced using walking poles. I purchased to sets of poles and Urban Poling has served us very well. We live with our grandchildren who received a treadmill for Christmas. It has been nice, because I can do my walking on the treadmill when the temperatures dip. but I can’t swing my arms and hold on, so the fresh air and poles are a better choice.
Since very early on in my journey I have taken Serrapeptase nightly in hopes it would ward off the lewy bodies associated with dementia. Plus, I attempt to use the computer, for research and blogging as well as socializing [while social distancing] additionally I challenge my mind with puzzle games. I do not know how effective the serrapeptase is, but I have added another product New Eden to our diet. Listen to the interview to hear why I am hopeful for a new normal.
10/27 I’ve learned about intentional walking… aka Fast walking. The goal is to get up to an hour a day… 3 or 4 times a week. John Pepper said to increase my time 5 minutes each week, until I reach at least 45 minutes per walk I started barely able to go 13 minutes. I’ve been experimenting with the dosage of Thiamine HCL. Have determined 1500 ( i.e. 3 capsules) works best for me. Tried four and lost energy. 😦
I purchased “The Parkinson’s Protocol” By Jodi Knapp and discovered the MIND diet MIND is the acronym for [Mediterranean-DASH Intervention for Neurodegenerative Delay] The book has motivated me to use more organically grown foods and use my WBV more for stimulating the lymphatic system as an additional means of detoxing. She indicated a person should include some seaweed in their diet, and I thought YES, the Stem Enhance product I use is made from a blue green algae… (close enough). And the author provided some recipes that I think sound simple enough and good enough, I plan to try some.
8/8/20 I have faithfully been detoxing in the infrared Sauna 4 or 5 times each week. I sweat profusely. My stomach has become more sensitive to the Carb/Levo. and since I couldn’t see any benefit from taking it, I have discontinued it all together. Since then I have read that people on agonists like the Amantadine may not require the Carb/Levo. I have made no further changes in medication or supplements, but discovered a strategy to increase my stability. Since realizing I drag my right leg, I have begun to focus on stepping out first with my left foot with the reward of cessation of stutter steps and near falls. (When I remember to start on the left foot)
6/7/20 I need to report I have been very pleased with my bodies response to the therapies I have been doing. The Neurologist recommended I go to physical therapy. I went 12 times this past month. The therapist agreed with me, that I can incorporate the things he taught me into my routine at home, so i don’t need to return for now. His focus was to strengthen my legs and back and to stretch muscles to combat the forward pull of the shoulders and slump typically seen in PwP. When I told him I could no longer hop or skip or jump the rope, he had me use a machine in a way to assist me to gain strength in my feet & toes. . So I have added jumps (or tiny hops) to my WBV routine. I try to take four Carb/Lopa a day, two Amantadine. I am loving having the energy which enables me to keep busy. John said he has been seeing me stumble, more often, so I have added a second capsule of the b1 Thiamine HCL 500mgo now I take 1000mg Thiamine HCL and 150mg Allithiaminev TTFD. My balance is improved.
4/8/20 The new. Dr. took me off of the timed release and other night time med. He asked me to try Amantadine for drooling. I still have a bit of drooling as it wears off. But the BIG thing is my ENERGY! I have been able to work outside for several hours, and when I come inside, I’m not exhausted! I am able to stay off of my chair and prepare food!
4/7/20 I switched Neurologists again. I’ve read if you aren’t getting the results you want, try a different Dr. I have had the best 6 days I’ve experienced in a long time. (possibly the extra Carb/Levo was contributing to my exhaustion. The new Dr, said only take 1 at a time and no more than 8 in a day. And don’t take the C/L with a cracker. His suggestion, to take it 1/2 hr after eating so there was still some food in my stomach, worked. 🙂
4/7/2020 I was wrong. A person can get too much B1. If a person takes more than they need, it may make their symptoms worse; which is what happened to me. I got very unstable on my feet. But I have found what seems to be what feels right for me. When I take 500 mg as Thiamine HCL and 150 mg as Allithiamine I am able to move, feeling nearly normal. But I still am unable to skip… just can’t get the bounce to get my feet off of the floor. Hope it will come.
2/8/20 I am continuing my stem cell therapy for long term benefits, but added B1 thiamine to my repertoire. I’m chalking my extreme weariness up to detoxification (or some would call it a healing crisis) .
As I reported in my blog post Another Stone to Turn Over …. b1 is water soluble, so it doesn’t build up in the body or become toxic. A person can’t over dose on it. It is a vitamin, so it isn’t net work marketed. I’ll do a deeper study and report.
1/23/ … The neurologist gave me the green light to experiment with my dosing of the Carb/Levo. If I take three at once, I feel more surefooted. He suggests I cut back to two… but increase the frequency to more often than the prescribed four times a day.
1/22/2020… I began taking two supplements from Cerule … StemEnhance Ultra and PlasmaFlo. The product is reported to stimulate the release of stem cells from a person’s bone marrow. I will report on this page if/when I feel confident about any improvement that might be attributed to the product.
January 2020. Neuro-ophthalmologist wouldn’t even see me without more conclusive testing for myasthenia gravis… so neurologist ordered an MRI. (I do not have MG.) Insurance denied the claim for the speechVive
12/4/2019 Update… At 5:30 in the morning, as I made my way into the bathroom, I had my first floor smacking fall. Weird thing to me was I had no realization that I was going down. But I knew when the back of my head slammed into the floor. Only obvious damage was a broken fingernail. My ego also took a hit. John pulled his cane out, instructing me to use it.
OK. . I want to be transparent as I strive to document changes in symptoms as time progresses. I received the diagnosis in May 2018. From August 2018 to July 2019 I was in ketosis and taking the Turmeric (three kings formula). In July I participated in a month long study in which I think I received the placebo. Regardless, I was asked to discontinue taking the supplements and was no longer on a Keto diet.
I had decided I needed to make a dietary change, anyway, because I was loosing too much weight. I had gotten down to 107 Lbs. and as I had begun to have to use an adhesive to keep my dentures in place. Since switching to a more Mediterranean type of diet, I have added ten pounds back on and no longer need to glue my dentures in place.
Any improvements in my condition from the ‘Three Kings formula’ and Mucuna Pruriens were either miniscule or imagined. So I have discontinued taking them.
I wanted to try a device that makes a background noise when a person speaks called SpeechVive. I can’t get it without a doctor’s prescription. So my primary care dr. referred me to a neurologist to follow through. The neurologist persuaded me to give Sinemet another try… the difference being, he said I could eat a cracker with it, and to BE SURE I follow it immediately with at least 8 oz. water. The extra instructions made a significant difference. I have felt nausea, but only threw up one time (and I later realized I had been distracted and failed to flush it down with sufficient water.)
If there is any benefit from the Sinemet it is difficult to tell. Since I don’t have tremors… perhaps I don’t drool quite as much?
The neurologist ordered a DatScan (probably to verify my issues are related to loss of dopamine) because I still am not bothered much by tremors… for which I am very thankful. The results showed significant losses of dopamine.
Next, the neurologist prescribed Clonazepam, to help me sleep better. His theory is, if I sleep better, I shouldn’t feel so tired all the time. Time will tell.
He has also referred me to a neuro-ophthalmologist, for further evaluation on convergence insufficiency vs oblique double vision… for which I have been prescribed prism lens, in order to be able to read.
The following symptoms I experience which I THINK are also related to the diagnosis: (no two pwp exhibit exactly the same symptoms… I haven’t listed others, which as yet have not impacted me.)
* My face is expressionless (masked) Dry eyes… from lack of blinking.
* My voice is very soft (a good Temple voice… but not good for being heard in public settings)
* I frequently strangle (but have learned I can swallow pills with the aid of applesauce)
- I occasionally experience a sudden involuntary intake of air… (gasp) which, if it occurs while eating (once while shampooing) causes me to aspirate crumbs, etc… into my lungs, triggering severe prolonged coughing. ):
* My loss of balance requires constant vigilance. I have had many close calls, but no full on falls (as of this writing)
* I call it a stutter step… perhaps is the start of what they call freezing. Or, the opposite, when walking (festination) I find myself running to keep from falling. Also known as gait disturbance with reduced arm swing.
* My micrographia is pretty significant. I often cannot read what I have written. John has been delegated to preparing the birthday cards for mailing.
* Rigidity .. Managing fork, knife and spoon make me feel like a child again.
* Weakness … in my hands, I need help to open even a water bottle … in my legs, I often appreciate a pull up from a chair
* Foot pain (cramping, curling of the toes.. turning in of the feet)
* Chronic constipation,,, requires combination of magnesium, fiber, aloe and digital stimulation to control.
* Tremors … mine are mostly action tremors, but I sometime experience a little resting tremors in my hands.
* I still use CBD oil when the corners of my mouth become sore from excessive drooling.
- Apathy has loomed its head occasionally, but I believe typing on the computer and doing family research are good for maintaining clarity of thought.
I SUPPOSE I SHOULD ALSO UPDATE MY VIEWS ON WHICH THERAPIES I AM NOW VIEWING AS THE MOST PROMISING:
- I may discontinue taking the Serrapeptase, if I see the kind of results with the New Eden Glyconutrients I anticipate.
* Of course… as nearly everyone says. EXERCISE... but one has to get beyond the apathy… and actually DO IT. . . . . . . . . * Qigong Yoga routines . . . . . . . . . . * gardening (getting grounded) . . . . . . . . . . .* breathing . .. . . . . . . . . * intentional walking…… (or) pole walking … (or) treadmill.
- To forestall brain fog/dementia… I take Serrapeptase (because I heard it could prevent the buildup of lewey bodies in the brain) Serrapeptase – The Miracle Enzyme Health Benefits of Serrapeptase are Scientifically Proven …. Leukoraiosis, or Lewy body dementia is the name given to people who have dementia …
* I am working to have the infrared sauna moved into our bathroom (where I think I will find it easier to use on a daily basis)
* The ‘Rhoades Car’ bicycle serves me best for socialization and emotional support.