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Day 965 of steadily increasing cpsp. What's it like ?

Nige

I think when anyone started this journey that post stroke, we would be encouraged to tackle hypersensitivity with contact with various items. Re-educate the cns to relearn what items are and that the touch isn’t a danger.
I get there is some benefit to feet on bare grass. Can’t say really what it is but historically it would give a nice feeling.
Regrettably if I touch anything cool, let alone cold, my whole left hand side is going to be in extreme pain. I would struggle to stand after a min or two.

Maybe one for the summer. I will give it a go

EmeraldEyes

Nige I take it you’ve tried vitamin D?
Regardless of a good diet it might be that you don’t absorb enough vit D from food (a malabsorption problem), a malfunction as a result of your stroke. But then that sort of thing would surely show up in blood tests I would have thought.
We certainly don’t get enough sunlight this time of year, but even in fine weather you still may not be getting enough if you are laid up in bed half the time with CPSP.

You get Vitamin D from the sun and also:
oily fish – such as salmon, sardines, herring and mackerel.
red meat.
liver (avoid liver if you are pregnant)
egg yolks.
fortified foods – such as some fat spreads and breakfast cereals.

At this point you probably know and have all this, I just thought I’d put it in anyway for the benefit of anyone reading this who are unaware. But one thing it won’t cure is the pain of osteoarthritis, my thumbs are a testament to that 😔

Lorraine

Nige

EmeraldEyes I think I need to get back on it Lorraine. My time outside has reduced a lot as the cold just makes it so difficult. Even if I did I guess the sun rays are so weak it might not make much difference.
Not had vitamin D mentioned as an issue in any of the blood tests. I had a spell when I was having so many I was surprised there was any blood left.
Historically my issue has been potassium with my adrenal gland being faulty, very low readings at times.
I wish i had been told about the sodium issue that came with the faulty gland. I loved crisps as well and twiglets. It was one of the things you knew it was Xmas when the twiglet tubs were in the shops. I wonder looking back if they were, at least in part, responsible.
These should do ?

Andrew

I agree with EmeraldEyes with regard to vitamin D and whether/how it is absorbed. Michael Mosley talked about this at length, relating the amount of D in the body to the gut biome, the immune system in general, and he also recommended fermented foods such as yoghurt (I make my own), kimchi (likewise), soy sauce (bottle, I’m afraid, but it’s great on stir fries). The last two contain salt and therefore need to be watched, but there is a huge amount in processed foods and it’s often masked with a fair bit of sugar. So I have ditched as much processed food as possible. I suspect that my salt intake has reduced despite the kimchi and the stir fry. Indeed, the doc is often saying that blood tests indicate that I am right at the bottom of what is acceptable despite this regime, and the taking of oxo cubes with ¼ tsp of salt an hour before the test on the latest occasion! To set this into context, prior to the stroke I did a lot of fast cycling. I sweated a lot, ate big bags of crisps (S&V, Ready Salted for preference) and even then I rarely dipped below the threshold as far as I know. On rare occasions I did, and it was accompanied by a mild headache and a metallic taste in the mouth - my wife did too. Quite obvious eventually. Both went after a bag of crisps almost immediately, and on those occasions only did I have the “Oh that’s really good” response. So it was not psychosomatic. Despite all that, I haven’t experienced that type of headache and taste since the stroke, and I guess that I haven’t sweated enough. Yet.

Pando

Nige

That’s a start : Just think, you would need to eat between 400 and 666 grams (14–23.5 ounces) of wild salmon to get 4000 IU of vitamin D !

Andrew

This going to be bit geeky or nerdy or both - I can’t tell the difference. Apologies in advance. But let others argue!

At maximum power in the summer we will attract a solar energy of about 1200 W/m2. Obviously it is often lower due to cloud cover and the time of day. From what I can make out, today’s maximum was only 217 W/m², and the next few days are likely to be, in turn,180, 137, 95, 135 and so on, with a whopping great 408 a week on Saturday (i.e.10 days’ time). Practice your sunbathing then! This last one might represent the theoretical maximum at this time of year. The temperature variation profile is not too far from being quite different, and depends on winds and air masses wafting in as well as the radiant heat of the sun.

There is not a lot we can do except to follow the predictions online. For the above numbers I did a quick google search for “watts per m² bristol”, but I usually follow martynhicks.uk (not a typo) for current info, which is solely for Bristol folk. The reason for the latter was simply to determine roughly what to expect when cycling to work pre-stroke - do I wear a coat, or how many layers, etc..

Simon

Andrew
One for @Pando !

Pando

Andrew

I use an app called Dminder to know when the next vitamin D opportunity from the Sun arises ; it tells me in 13 days !!! hooray. Although the Sun has more to offer us than D.

Otherwise ; DIY your own app

Creating an app that estimates how much vitamin D you get from sun exposure involves several factors, including your location, skin type, time of day, duration of sun exposure, and the amount of skin exposed. Here’s a basic outline of how such an app could work:

Key Features:

Location Tracking: Use GPS to determine the user’s location to calculate the UV index.
UV Index Data: Integrate with a weather API to get real-time UV index data.
Skin Type Input: Allow users to input their skin type (Fitzpatrick scale) to estimate vitamin D synthesis.
Time and Duration: Let users input the time of day and duration of sun exposure.
Clothing and Sunscreen: Consider the amount of skin exposed and whether sunscreen is used.
Vitamin D Calculation: Use a formula to estimate vitamin D production based on the above factors.
Recommendations: Provide personalized recommendations for optimal sun exposure.

Example Workflow:

User Input:
- Location (auto-detected or manual input).
- Skin type (I-VI on the Fitzpatrick scale).
- Time of day and duration of sun exposure.
- Amount of skin exposed (e.g., face, arms, legs).
- Use of sunscreen (SPF level).
Data Processing:
- Fetch UV index from a weather API.
- Calculate effective UV exposure based on skin type and sunscreen use.
- Estimate vitamin D synthesis using a formula like:
  [
  \text{Vitamin D (IU)} = \text{UV Index} \times \text{Skin Type Factor} \times \text{Exposed Skin Area} \times \text{Time (minutes)}
  ]
Output:
- Display estimated vitamin D production in International Units (IU).
- Provide tips for safe sun exposure and vitamin D optimization.

Example APIs:

OpenWeatherMap: For UV index data.
Google Maps API: For location tracking.

Example Formula:

A simplified formula for vitamin D estimation might look like this:
[
\text{Vitamin D (IU)} = \text{UV Index} \times \text{Skin Type Factor} \times \text{Exposed Skin Area} \times \text{Time (minutes)}
]
Where:

Skin Type Factor: A multiplier based on skin type (e.g., 1 for Type I, 0.5 for Type IV).
Exposed Skin Area: Percentage of skin exposed (e.g., 25% for face and hands).

Example Calculation:

UV Index: 5
Skin Type: III (Factor: 0.75)
Exposed Skin Area: 25%
Time: 30 minutes

[
\text{Vitamin D} = 5 \times 0.75 \times 0.25 \times 30 = 28.125 \text{ IU}
]

Additional Considerations:

Health Guidelines: Incorporate guidelines from health organizations (e.g., WHO, NIH) for safe sun exposure and vitamin D intake.
User Education: Provide information on the importance of vitamin D, risks of overexposure, and how to balance sun exposure with skin protection.

Development Tools:

Frontend: React Native, Flutter, or Swift for mobile app development.
Backend: Node.js, Python (Django/Flask) for server-side logic.
Database: Firebase, MongoDB for user data storage.

Example App Name:

D-Sunshine
Vitamin D Tracker
SunSafe D

This app would help users optimize their sun exposure for vitamin D synthesis while minimizing the risk of skin damage.

EmeraldEyes

Yes, they would do. I’m only guess here, it might take a couple of days to feel any positive effect. Or it might take a couple of weeks to feel any significant difference. I know when I was low in Folic acid, it just took a few days being on them before I was feeling the benefits of it. But that was a high dose prescribed by my gp. Fingers crossed you feel some reduction from your pain.

Andrew

Vitamin D and Potassium - seem good to me. Obviously the doctor needs to know just to check.

Nige

Pando wow that is a lot. I would prefer not to take a tablet but it does seem much easier

Pando

Nige I took 12,000 IU of D yesterday plus pill of Magnesium, Calcium, Cu, Zinc, Boron, D, K2 and a bit of Restless Leg at night. However, on Thursday I took 7,000 IU of D and no pill, just Mg and got cramps all night long in legs.

Most Vitamin D3 supplements are made using lanolin, the waxy substance secreted by sheep to condition their wool. It’s a safe and effective way to get vitamin D, which is essential for bone, muscle, and immune health. Many folks are allergic to it. The safest way of getting D that never gives me problems is my UVB panel from the USA ; 5 minutes front and 5 mins back each day. No such panel can be bought in the UK, unfortunately

11 Days until we can get D from the sun, and exit Winter syndrome mode!

Pando

Nige I will venture a little further, but whether or not my advice speaks to you, I know not. I have a feeling you might have put me in the “woo woo” category. When (if ever) you reach adequate vitamin D levels your gut will function at its best. The immune system monitors and influences the gut microbiome which in turn impacts brain health in numerous ways. (The human genome has 26,000 functioning genes; our large intestine (through 100 trillion bacteria) contains 4 million genes.) It is estimated that the gut flora produce 95% of the serotonin, a key neurotransmitter for happiness and pain control, that we use.

To find out what the optimal does is (way more than the govt. RDA) read “The Optimal Dose,” by Judson Somerville, MD

Nige

I’m not sure what a woo woo is 😁😁

Pando

Nige ˈwü-ˌwü : dubiously or outlandishly mystical, supernatural, or unscientific.

Nige

Pando Ah I see. 😁 Well I would admit I do like a drop of science but unfortunately there isn’t too much about when it comes to CPSP or even stroke pain. So I would be a fool not to listen to other ideas, especially any that might have helped anyone else with similar stroke outcomes. Proven or otherwise.

Nige

Free book on vitamin D at the mo
https://www.hotukdeals.com/share-deal-from-app/4537878

Pando

Nige

I’m reading “Dermo Neuro Modulating: Manual Treatment for Peripheral Nerves and Especially Cutaneous Nerves ”, by Diane Jacobs. Kindle ed. £8… DNM for short.

My first Rolfing session with therapist Nick Pepper was amazing ; he did Sleeve day 1 program ; loosening fascia, teaching me how to unload my nerves, teaching me how to decompress my fascia. The DNM book talks a lots about all 47 miles of our nerves, and I could not have discovered a more exciting and relevant therapy !

Good luck, R

What are Rolfing “Sleeve” Sessions?
- They are the initial three sessions in a 10-session Rolfing series, also known as Structural Integration.
- The primary goal is to address and release restrictions in the superficial layers of connective tissue, or fascia, which can impact posture, movement, and overall body function.
- These sessions are designed to create a foundation for deeper work in subsequent sessions.
What happens in the “Sleeve” Sessions?
- Session 1: Focuses on freeing the breath by working on the ribcage, shoulders, neck, and head.
- Session 2: Aims to provide a stable foundation by balancing the feet, lower legs, and knees.
- Session 3: Addresses the “side view” of the body, focusing on how the head, shoulder girdle, and hips are positioned when standing, and how they relate to each other under the influence of gravity.
Why are they called “Sleeve” Sessions?
- The term “sleeve” refers to the fact that these sessions work on the outer layers of the body, like a sleeve on a garment.
- The idea is to work from the surface outwards, preparing the body for deeper work in the following sessions.
What are the benefits of “Sleeve” Sessions?
- Improved posture and alignment.
- Increased flexibility and range of motion.
- Enhanced breathing and body awareness.
- A foundation for deeper structural changes in subsequent sessions.

Dermo Neuro Modulating (DNM) is a therapeutic approach that focuses on addressing chronic pain and dysfunction by targeting the skin and its relationship with the nervous system. This method is based on the idea that the skin, as the largest sensory organ, plays a crucial role in modulating pain signals and neural activity. DNM involves gentle, specific manual techniques applied to the skin to influence the nervous system and reduce pain.

Here are some therapies or approaches that may include or align with Dermo Neuro Modulating principles:

1. Manual Therapy

DNM is often incorporated into manual therapy practices, such as myofascial release or soft tissue mobilization. Therapists use light, precise touches to the skin to stimulate neural pathways and reduce pain.

2. Neuromuscular Therapy

This therapy focuses on treating trigger points and addressing imbalances in the nervous system. DNM techniques can differ from neuromuscular therapy by targeting cutaneous receptors to modulate pain.

3. Pain Science Education

DNM is often paired with pain science education to help patients understand how the nervous system processes pain and how interventions like DNM can help “retrain” the brain to reduce chronic pain.

4. Somatosensory Rehabilitation

This approach involves retraining the somatosensory system (the part of the nervous system responsible for processing sensory information). DNM techniques can be used to desensitize overactive neural pathways and improve sensory processing.

5. Fascial Counterstrain

This gentle, hands-on therapy focuses on releasing tension in the fascia and nervous system. DNM techniques may be used to enhance the effects of fascial counterstrain by targeting cutaneous receptors.

6. Craniosacral Therapy

DNM can be integrated into craniosacral therapy to address chronic pain and nervous system dysregulation by working with the skin and its connection to the cranial and spinal systems.

7. Chronic Pain Management Programs

DNM is often used in multidisciplinary pain management programs that combine physical therapy, psychological support, and education to address chronic pain conditions.

8. Sensory Retraining Therapy

This therapy is used for conditions like complex regional pain syndrome (CRPS) or neuropathy. DNM techniques can help retrain the nervous system by providing gentle sensory input to the skin.

Key Principles of DNM:

Gentle Stimulation: Light touch is used to avoid overstimulating the nervous system.
Cutaneous Receptors: Focuses on stimulating mechanoreceptors in the skin to influence neural pathways.
Pain Modulation: Aims to reduce central sensitization and chronic pain by calming the nervous system.
Patient-Centered: Tailored to the individual’s specific pain patterns and nervous system responses.

If you’re considering DNM or related therapies, it’s important to work with a trained practitioner who understands the principles of pain science and nervous system modulation. Always consult a healthcare professional to determine the best approach for your specific condition.

Nige

Pando I was a bit surprised to see the AI summary of Rolfing included the words “pseudoscience and quackery”. Haven’t seen quackery in a while.
I would guess that the “faith” aspect of it has a part to play in it’s attractiveness (and other items) for you ?

Nige

I don’t think Farma especially came into this one. It was more that Rolfing hadn’t been proven to show benefits over regular massage.
One thing sticks in my mind that one of the consultants told me when I was asking about some possible solution. He said something along the lines of “if there was a proven solution, we would all be doing it by now”. Well, yeh, if you were researching, that might help

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