Re- Introduction..

a reply to: skywatcher44

Just realized that I don't know much about you Sky. Like...how has your life been? What are some of your favorite things? What inspires you?

For whatever it's worth, I believe that we are far more than just our physical bodies and that when we leave this earth, we go on to somewhere different, somewhere better.

You have a sense of humor and are an inspiration.

a reply to: Night Star

Hi Night Star, me I am just a mellow Joe.. Not a singer or Dancer and I don't look for Limelight.
I have always been comfortable with my own company and even managed that some while married
and bringing up children. I have always had interest in the Cosmos and science and books and Music.
I support Israel and know what a struggle they have had and why they must stay strong.
I realise how important our Women are and how sometimes they can do the impossible.
I hope still for adventure ? Also for a Miracle, I do not fear moving on but can get upset for others
around me..
Ha my phone entry earlier was indeed funny it was difficult to edit content as the emo joes kept hugging half my screen.
Take care..

Blessings to you, Skywatcher. Thank you for sharing so many moments of your life with your ATS family; we're privileged to have been a part of it. Grace and peace to you.

a reply to: whitewave

Thanks indeed Whitewave and take care..

Thanks also ufoorbhunter. Your well wishes are appreciated. Take care.

a reply to: skywatcher44
Hope you ok Skywatcher, just seen this thread not realised, not quite sure what to say.............. best wishes to you

a reply to: skywatcher44

Thank you so much for sharing this! Adventures can be found in the Shed as you know. And miracles happen every day.

Update.
Hi all.. My Trial continues.. I had my appointment with a Professor Consultant ALS Specialist on the 11th Floor again but in a nice private room with a view over a green and clean Sheffield here in England, Thanks Angel Nurse again ! .. ALS now confirmed by this dapper 40 year old with flickering eyelids and oozing confidence and knowing a lot. No estimation of my demise as I know it can be under a year to most probable up to three years and very rare occasionaly ten years.
Most my test came back fine bloods, Urine, MRI, Xray, Lumbar P I think ? It was mainly the EMG torture that pinpointed my Diagnosis along with my symptoms experienced.
www.medicinenet.com...
www.sheffield.ac.uk...

This dapper Fellow let me know that most pop of during a comfortable sleep "" How are you sleeping Mr M "
I can contact his secretary whenever.
Considering my original appointment was for 10th of Distant September I with the help of a few Angels have bucked the creaky system here in the UK. Diagnosed in just over two months when the average is I think 8 Months.
Obviously with myself it was important to be quicker as I feel I have a V steep down slope, this may well be because my Immune system is working so well after some years of Ultra healthy practices ?
I will start my Liquid regimen on Thursday 21/6. I have Today e-mailed a few contacts including a specialist ALS senior Nurse, A Leader Of the MND Charity here in the UK ( Angel )who Has helped in my getting Diagnosed quickly and eventually to Mr McDermott's secretary for Himself from who I have asked for feedback, Correction or Criticism . I will copy the draft of my E-Mail below and will welcome any Input however sent. O I part explained ( Slurred ) my Liquid Regimen, Mr Mac in his wisdom his reply was you should maybe increase your calorific intake by 20% as your twitchings will be using more energy than not twitching. Anyways still positive some onward I wobble enjoying the World Cup ( Soccer )
Very Well hosted by Russia ( You can be nice )
Make of this what you will.. And good health to ye all or some peace at least.
Hi Jane.
I had my appointment yesterday with Mr McDermott a nice guy, him of the flickering eyelids. He confirmed a diagnosis of ALS like I expected.. Good in the end I had a diagnosis within near two months since first notification to my Doctor. The average is Eight months which is terrible really with such a relentless condition. All my other tests came back as fine Bloods, Urine, MRI, Xray, Lumbar puncture I think Fine. That EMG torture test was the main pinpoint.. I am fine, happy to have a diagnosis as vague as ALS seems to be, I think they will sub categorize things in the future somewhat ? I have E-Mailed Theresa Walsh who Sam Coggeran tried to arrange a visit yesterday, I presume that you know of her ? I will also E-mail Mr McDermott's Secretary if Theresa does not forward on my plan Ha.. I will copy bellow what I have sent Feel free to comment or criticize most welcome..
Kind regards
Kevin
"Hi Theresa. Thought I would drop you an E-Mail to make contact and update you on my thoughts.

Yesterday I had an appointment with Mr McDermott in ward L1. Sam Coggeran ( An Angel ) had tried to get me to see you but this was not possible . I will briefly go through my progression to yesterday's diagnosis.

I first notices muscle twitches in my right lower leg in June of 2017 I thought this was just due to exercize as I was a regular swimmer, Biker and walker.
I continued my life while the twitches continued.. By November 2017 I noticed my right foot had slowed some this started the tick tick down with no sign of any improvement on any day since.
The twitching spread to most of my muscles and I have gradually weakened. My voice started slurring in January with some coughing up of flem difficulty and inability to hold a sneeze.
Now I can only shuffle some as my right leg is very heavy for my weakened muscles, my left leg seems to be following and is now in the place my right one was in April. All my muscles are weakened.

Yesterday Mr McDermott mentioned a trial MIROCALS and Nurse Mbombe Kazoka brought to me the Patient Information Sheet and explained this trial some. After reading through the information I have decided against it.
I feel my time is short and nothing short of some miracle will arrest this progress down. Also I have read about a mouse study with Upping Treggs and it had similar results to the Riluzole usage..
I have slurred a message to Mbombe as she only gave a phone number, saying I have decided against that trial which I feel is far to long for me in my condition also with not much chance of any improvement.
Also I agreed to taking Riluzole and have a box of 56. On reflection I will not start these tablets, I am medication free, I have no Pain, I would not like any upsetting side effects or with my Immune system suppressed catching a bad cold or Virus would be horrid. I have a mild cold at present and the inability to clear ones throat or sneeze properly is very uncomfortable.

I will share my Plan with you and will welcome any feedback or corrections.

I have in my mind my birthday on August 4th. Now my downward progression has seemed to me a tick tock steady pace, I in my opinion consider myself at 20% since I started this Journey at near 100% on the 1st of November 2017.
I initially gained in weight until quite recently when my appetite has reduced somewhat I have at least I would think 20lbs of excess weight . I spoke or slurred to Mr Mcdermott how I intended to go on a liquid regime and he answered with the fact that I should maybe increase my calorific input by 20% as my muscles were twitching away.
Now I could not go into detail with my slurring. I intend to liquid/ Fast some to see how this goes ? I will drink good water, I will drink Nettle tea with maybe some Lemon and honey the same with Green Tea, I will also have a small bio- Yogurt drink and a twice weekly berry smoothie maybe ? I will do this for 10 days and evaluate ? then for a 34 further days if happy until my Birthday on 4/8 when I will evaluate again if able ?

My Reasoning ( Corrections or criticism are fine )

After looking at to much ha published research.

Maybe Accretion of Missfolded proteins within cells are damaging those cells enough for out Immune system to jump in and kill of the cell. To me there seems to be a fault with the Autophagy process. These missfolds are common in us all on occasion ? the Autophagy process dissolves these missfolds and no deadly accretion occurs.
This Autophagy process is boosted somewhat by fasting or Intermittent Fasting ? Although I believe the Immune System is also boosted ?
I have read somewhere that a mouse study found that increasing Autophagy at early onset ALS delayed that onset somewhat, on later stage ALS it is seemed that with mice increased Autophagy hastened demise ? Now I have not found any human study with boosting Autophagy ? I presume the boosted Immune system overrides any Boosted autophagy in mice.

www.tandfonline.com...

scholar.google.co.uk...
I hope this is somehow clear above ? I do need to do something to try to help myself while still just able. I intend to record my weight twice daily also record my input and continue with my symptom record. I may add V

ATP Playing up for me ? It seemed to cut short above some and wouldna allow me to add a link.

Will cut and paste ending here and add the other link.

I hope this is somehow clear above ? I do need to do something to try to help myself while still just able. I intend to record my weight twice daily also record my input and continue with my symptom record. I may add Vitamins in effervescent form to my water.
Well Theresa what a garbled introduction.. I will copy most of this to Mr Mcdermott Secretary so he can maybe comment ha or cry ? Unless you will forward it and saving me the trouble ?
I will await your reply..
Kind regards


www.tandfonline.com...

My twitter feed has also just thrown up a reference to the Treg Trials MIROCALS you can see my reply Maybe ?
Basically these T cells can lengthen your life some while in a deteriorating state the trial I rejected was over a two year period with numerous Lumber punctures and blood tests no Payment arrange your own transport reimbursable Ha
I don't need any of that in my current condition Thank's.

twitter.com...

www.alsresearchforum.org...

Take care all..TIANDB.

a reply to: skywatcher44

Thank you for the update. I'll be honest and admit that I understood little of what you wrote because it was technical and about things I don't understand but it is good to hear you got a clear diagnosis, even though it's not a nice diagnosis. Nurses are indeed Angels.

I have no medical knowledge whatsoever but have read in the papers that CBD (the non-psychoactive compound in Cannabis) can help certain people with spasms and similar complaints. CBD is legally available in the UK. Personally I'd rather have a THC/CBD oil because both cannabinoids reinforce each other but there is evidence to suggest that it can put the brakes on quite a few conditions. To be clear, you don't smoke the oil, you place a drop under your tongue and it gets ingested without swallowing it. (It does not taste "nice")

Perhaps something to think about?

This research has not yet been conducted in human clinical trials but a study by Dr. Mary Abood has shown that symptomatic relief was measured for appetite, insomnia and spasticity in ALS patients (Stephen Byer 2013). The two studies and the large body of scientific work that has already been conducted prove the safety of cannabis warrants further investigation of cannabis and cannabinoids for treatment of ALS.

mychronicrelief.com...

It won't stop ALS but it might ease the symptoms a little.

I'll stop here before I sound trite and lacking again...

a reply to: LightSpeedDriver

Hi LightSpeedDriver. Thanks for your input. You know a few years ago I bought some Hemp oil and took it daily for the duration of the supply. I was very healthy anyways and just searching for a cure for my sweating ailment. I might try again while still mobile ish ?. Some of those comments within that page are heart wrenching, I honestly cannot see myself on a ventilator or completely Immobile and hope I pop of on my adventure in my sleep before that stage . Unless I find a miracle
of course ? I will look for a source. You are the second recent acquaintance to mention cannabis oil, one of my Angels mentioned a friend who had cancer and has managed to defy his Doctors for a few years and counting ha Good luck to him.
C Oil has also been headline news here in the UK with reference to Severe Epilepsy, many stories there if looking to add credence.

www.bbc.co.uk...

Take care Brother or maybe Sister.. Live well..

No decent cannabis Oil is available to buy in the UK ?

I think Hemp Oil does not quite cut it either ?

a reply to: skywatcher44

I never take care. I'm a clumsy Yorkshireman without the right accent. (My parents moved me south very quickly) I do what I think is right regardless of what others (or the government!) think.

Speaking of news, there was a mother who obtained Cannabis oil recently (legally!) in Canada and brought it back home to her son in the UK. I forget the name of his condition, it may have been epilepsy but it was an extreme ailment that the lad had. Muscles firing uncontrollably at 150% all day when he had an episode which was several times a day. She googled, Cannabis (THC and CBD plus CBG, CBN and all the cryptoids) oil was recommend for her sons condition. She tried it. She seems to have gained legal traction because the 2nd time she illegally imported it they let her in with her illegal extract. It was the only thing that worked for her sons condition, or rather, the only thing that eased the symptoms considerably. Cannabinoids reinforce the immune and endocrine systems, if memory serves. Among other things.

It has been denied us for too long. Take care too brother.

And just in case no one else says it, thank you for being a fireman.

Right starting my 44 Day Fast/Liquids today I am taking it in 4 Day slots to see how I go health wise and weight wise.
Will report in after ten days.. I made a most delicious boiled chicken stew for my yesterday's main meal I hope my son will appreciate it ha. I have Just removed all the bones and I was sure tempted to Lick some .
An actimel A nettle Tea A Green Tea and some Smart Water. Today's menu.
Onward's..
TIANDB

Kev, thank you so much for the update! Over here, we have the CBD oils in liquid form, candies, brownies, honey sticks etc. It is legal here. I will continue to follow along in this thread and check in on you.

a reply to: Night Star

Hi Night Star I hope you are Fine. Yep I briefly looked into the C Oil but the good ones ? are not available here in the UK. We do have hemp oil which is Legal ( Usually a rip off ) but not quite the correct constituents. Ah well Oils don't go to well in drinks unless a good Bullitproof. Take care Angel..

Slight modification to my Plan. This was in my head somewhere but forgotten with the wobbling and slurring malarkey.
With Autophagy in mind the cleaning of cells occurs before regeneration, this regeneration is assisted by good food high in Spermadine .

www.chemistryworld.com...

www.abovetopsecret.com...

agingdefeated.com...



So alteration on positive thinking on day One.. Three day water/Liquid Fast forth Day feast x 11, on good food while I can swallow ok anyways.
Outside the Box a tad but Tryng for Miracles. Still report in 10 days.
Take care all.
TIANDB

a reply to: skywatcher44

Spermadine ?!

... pass.

😳

I know I shouldn't laugh, but I can't help it! But hey...whatever works right?
Still giggling here.

a reply to: skywatcher44

. Take care Angel..

Who me? I've been called an Angel before. I've also been called a brat and a pain in the arse. Shrugs. LOL

a reply to: Timely

Ha The links are there above and the science.. Oh also red wine is high in it and red grapes..

I hope it's not in the beer too! LOL