A very warm and humble Hello to all participants of this forum.
This is my first of many posts, and I hope my posts will inspire some out of the box thinking and analysis.
While waiting to be activated I took a little tour of the threads and found in general that there is a vast collective knowledge available from the members. Most especially from those who have been dealing with this lousy, impartial, sickening disease for years.
Some respondents seem to be very wired indeed. I hope to tap into that knowledge bank really soon. One respondent
has chinked my Armour already, Ellie.
Ellie, you mention the following to Douglas in a post dated 24/10/18 or there about. Regarding voice recording,,,,,
This is an area I hadn't thought of and would like to tap into your knowledge of such products.
But first,
Why I qualify to be here among fellow sufferers.
My Name is Micheal Cain,,xxxxx not really,
~~~~~
My name is Ben , I live in Essex. I am 64 in August, and I have ALS. Diagnosed in April this year, I am new to the diagnosis, but symptoms have been present for four years.
~~
Apologies for any medical term spelling bloopers.
~~~
The earliest related sign came in 2015 when I woke one morning to experience the 'Phantom Heel' (the Latin is something like Planter-Achilles) in my left foot. Interestingly, immediately prior (3 days) to this I had removed from the sole of that foot, a Neuro-vascular Corn. This thing lay hidden under a callous for 8 years, growing, evolving, developing blood vessels, and nerve endings. I thought the pain I was experiencing was the callous, and so ignored it as a fact of life. I went to the doctors when I had reached the stage where I couldn't ground the foot at all. In preparation I heroically removed the callous to expose the underlying red flesh, and this hexagon shaped white area smack in the middle of the exposed flesh. About the same size as the end of a pencil.
My Doctor directed me to a chiropodist who, over 3-4 visits shaved it down to nothing. From that moment I could walk pain free and without a limp,,,for 3 days.
Now dealing with the Phantom Heel I can state, to end the corn saga. I have never experienced another moments pain or discomfort. It healed perfectly, and the callous disappeared.
Now being able to ground the foot, I endured the Phantom heel for around 18 days, then as suddenly as it appeared, it was gone. Never to raise its ugly face again. Hooray I hear you chant in a collective hoot of praise.
I'll say. I had complete, pain free, total mobility again. For 17 hours.
If these last two problems are not related in some way to what you are about to read. I'll be quite dashed as I have theories.
The very next day I lose complete control of my left knee. I labelled it 'Elvis' syndrome. At this stage there was no pain, but as it progressed it affected the leg muscles causing pain, numbness and loss of strength. I thought I had a trapped nerve, nothing more.
Fast forward 18 months and after hobbling around for over a year, I develope 'Drop Foot'.
For those reading who have experienced this particular nasty, you know what's coming up. For those uninitiated it effectively means the end of any future use of that leg. You now can't ground the heel, and grounding with the toes will start the muscle problems, starting with the permanently stressed calf. Then the hamstring, thigh and then, the cramps. Of course, by this stage I was on one crutch all the time.
I maintained this level of disability and using one crutch for a couple of years with no other symptoms displaying. That was until August of last year '18.
This is when the right leg decided, suddenly, to join the party.
By December my right leg had caught up to the left in all areas except I maintained a smidgen of downward movement in the foot. Not being able to ground either foot at the heel, and a complete loss of all control or movement has rendered me wheelchair bound. On April 3rd, confirmed diagnosis, MND/ALS.
If there are any members who's own experience mirrors my own in the area of symptom development.
B.
This is my first of many posts, and I hope my posts will inspire some out of the box thinking and analysis.
While waiting to be activated I took a little tour of the threads and found in general that there is a vast collective knowledge available from the members. Most especially from those who have been dealing with this lousy, impartial, sickening disease for years.
Some respondents seem to be very wired indeed. I hope to tap into that knowledge bank really soon. One respondent
has chinked my Armour already, Ellie.
Ellie, you mention the following to Douglas in a post dated 24/10/18 or there about. Regarding voice recording,,,,,
( I'm sure you've found Apps for text-to-speech and, if your hands aren't up to typing, there's eye gaze tech which gives full PC access (I'd be lost without it).)
But first,
Why I qualify to be here among fellow sufferers.
My Name is Micheal Cain,,xxxxx not really,
~~~~~
My name is Ben , I live in Essex. I am 64 in August, and I have ALS. Diagnosed in April this year, I am new to the diagnosis, but symptoms have been present for four years.
~~
Apologies for any medical term spelling bloopers.
~~~
The earliest related sign came in 2015 when I woke one morning to experience the 'Phantom Heel' (the Latin is something like Planter-Achilles) in my left foot. Interestingly, immediately prior (3 days) to this I had removed from the sole of that foot, a Neuro-vascular Corn. This thing lay hidden under a callous for 8 years, growing, evolving, developing blood vessels, and nerve endings. I thought the pain I was experiencing was the callous, and so ignored it as a fact of life. I went to the doctors when I had reached the stage where I couldn't ground the foot at all. In preparation I heroically removed the callous to expose the underlying red flesh, and this hexagon shaped white area smack in the middle of the exposed flesh. About the same size as the end of a pencil.
My Doctor directed me to a chiropodist who, over 3-4 visits shaved it down to nothing. From that moment I could walk pain free and without a limp,,,for 3 days.
Now dealing with the Phantom Heel I can state, to end the corn saga. I have never experienced another moments pain or discomfort. It healed perfectly, and the callous disappeared.
Now being able to ground the foot, I endured the Phantom heel for around 18 days, then as suddenly as it appeared, it was gone. Never to raise its ugly face again. Hooray I hear you chant in a collective hoot of praise.
I'll say. I had complete, pain free, total mobility again. For 17 hours.
If these last two problems are not related in some way to what you are about to read. I'll be quite dashed as I have theories.
The very next day I lose complete control of my left knee. I labelled it 'Elvis' syndrome. At this stage there was no pain, but as it progressed it affected the leg muscles causing pain, numbness and loss of strength. I thought I had a trapped nerve, nothing more.
Fast forward 18 months and after hobbling around for over a year, I develope 'Drop Foot'.
For those reading who have experienced this particular nasty, you know what's coming up. For those uninitiated it effectively means the end of any future use of that leg. You now can't ground the heel, and grounding with the toes will start the muscle problems, starting with the permanently stressed calf. Then the hamstring, thigh and then, the cramps. Of course, by this stage I was on one crutch all the time.
I maintained this level of disability and using one crutch for a couple of years with no other symptoms displaying. That was until August of last year '18.
This is when the right leg decided, suddenly, to join the party.
By December my right leg had caught up to the left in all areas except I maintained a smidgen of downward movement in the foot. Not being able to ground either foot at the heel, and a complete loss of all control or movement has rendered me wheelchair bound. On April 3rd, confirmed diagnosis, MND/ALS.
If there are any members who's own experience mirrors my own in the area of symptom development.
B.
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