Re:Identifying our condition

[Guest guest]

Hi Group,

This post and some others on has got me thinking about how to

systematicly identify our disability not only to talk to each other but to

be better able to sense progression after tramuas and with age. Being an

engineer, it has to be a number scale like the one used in cardiac rehab

called the Borg Scale of perceived effort which works very well in that

environment. So, here's the suggestion.

1 - No symptoms and no difficulties with life's tasks.

2 - Noticeable symptoms but no impairment with life's tasks.

3 - Some impairment with life's tasks such as walking gait, working with

tools, and strength required things.

4 - Some impairment with physical deformities that require some adjustment

to life's activities and consideration for aids such as special shoes.

5 - Impairment that requires adjustment but does not make life's tasks

impossible except for things requireing very strong capabilities.

6 - Life limiting impairment that significantly effects accomplishment of

normal life activities such as sports and things that require more than

minimal endurance.

7 - Impairment that requires strict control of life's decisions and

conditions such as needing aid devices, weight, and forethought on tasks

chosen to do in life to avoid failure due to imparirments.

8 - Impairment that produces hazards in life such as negotiating stairs,

slippery ground, and quick reactions causing difficulty with falls and

bumping into things.

9 - Impairment that causes partial dependence on wheelchairs, scooters, or

other mobility devices.

10 - Total dependence on mobility devices and limitation of most physical

tasks.

So, using this scale, my personal history runs like so :

0-4 yrs - 1

4-12 yrs - 2

12-13 yrs - 3

13-25 yrs - 4

25-45 yrs - 5

45-50 yrs - 6

50-55 yrs - 7

55-65 yrs - 8

65 yrs + ????

Anyone want to compare charts ? - EdM

-----Original Message-----

From: DBorde2763 <DBORDE2763@...>

hnpp <hnpp >

Date: Tuesday, January 30, 2001 8:31 PM

Subject: [hnpp] Re: Welcome to the group JANE

>> Hi Group,

>> I received this from Dr. Jane and should have attached it to her

>welcome message, anyway here it is. Again, welcome to the group Jane.

>> Hi Dan-

>> I am a 46 year old female obstetricain-gynecologist

>> currently practicing in The Woodlands, TX. I first

>> had symptoms of HNPP at age 15, when I woke up one

>> morning with a numb and essentially paralyzed left

>> arm. >> I was told by Dr. Killian that HNPP is not

>> progressive, so I was bummed to learn otherwise. I

>> don't plan to progress so much that it interferes with

>> my lifestyle .....Jane C. MD

[Guest guest]

Hi Everyone, EdM,

Thanks for your post with the number

scale, I think I`ll just book the cemetery

now! I`m 37 and somewhere between

9 and 10. LOL.

Joyce.

[Guest guest]

Hi Groups,

I have followed your comments with interest and thank you for the responses.

Some general further comments might be worthwhile. It would be nice to be

very scientific and use a large data base with which to make such scales. Of

course, lacking that, the wordings were largely my own experience with a

sensing of the conditions of those who post here added into the

consideration. In general, I have mostly very minor Pressure Palsie problems

and deformities which have significantly effected my life tasks.

Furthermore, with the exception of some plateaus present, my symptoms have

progressed in an even matter apparantly exascerbated by major surgeries for

other reasons, heart and intestinal blockage. I do not believe this to be an

universal experience for you out there. That is evident from the posts,

however my focus is obviously on the impact on life's tasks. Whatever the

type of symptom that impairs life's tasks that is attributable to CMT/HNPP

either primary or secondary in nature, the net result is a limitation that

varies with time. The nature of the variation is of interest in that it may

provide a mental accomodation to it as others may demonstrate similar

effects.

So, the fundamental nature of Science is to provide a good measuring

standard by which we may chart the progress of the event as we observe it.

Any other approach is chaotic and the apparant CMT/HNPP symptom variability

is certainly headed in that direction. In the learning process, there is a

dynamic until the most fundamental nature is determined and recognised. I

fear that we are in a situation whereby that dynamic may never settle down

due to the potential for endless genetic variation over succeeding

generations. If that's the case, then maybe we should focus on finding ways

to correct the genetic abnormalities in known family situations.

I seem to be in a philosophic mood tonight and hope you can follow this. At

any rate, I wouldn't be much of an engineer if I didn't think of it in that

way from time to time. Enjoy - EdM

-----Original Message-----

From: Edwin R. More <edwinrmore@...>

hnpp <hnpp >

Cc: < >

Date: Friday, February 09, 2001 3:39 PM

Subject: [] Re:Identifying our condition

>Hi Group,

>This post and some others on has got me thinking about how to

>systematicly identify our disability not only to talk to each other but to

>be better able to sense progression after tramuas and with age. Being an

>engineer, it has to be a number scale like the one used in cardiac rehab

>called the Borg Scale of perceived effort which works very well in that

>environment. So, here's the suggestion.

>

>1 - No symptoms and no difficulties with life's tasks.

>2 - Noticeable symptoms but no impairment with life's tasks.

>3 - Some impairment with life's tasks such as walking gait, working with

>tools, and strength required things.

>4 - Some impairment with physical deformities that require some adjustment

>to life's activities and consideration for aids such as special shoes.

>5 - Impairment that requires adjustment but does not make life's tasks

>impossible except for things requireing very strong capabilities.

>6 - Life limiting impairment that significantly effects accomplishment of

>normal life activities such as sports and things that require more than

>minimal endurance.

>7 - Impairment that requires strict control of life's decisions and

>conditions such as needing aid devices, weight, and forethought on tasks

>chosen to do in life to avoid failure due to imparirments.

>8 - Impairment that produces hazards in life such as negotiating stairs,

>slippery ground, and quick reactions causing difficulty with falls and

>bumping into things.

>9 - Impairment that causes partial dependence on wheelchairs, scooters, or

>other mobility devices.

>10 - Total dependence on mobility devices and limitation of most physical

>tasks.

>

>So, using this scale, my personal history runs like so :

>0-4 yrs - 1

>4-12 yrs - 2

>12-13 yrs - 3

>13-25 yrs - 4

>25-45 yrs - 5

>45-50 yrs - 6

>50-55 yrs - 7

>55-65 yrs - 8

>65 yrs + ????

>

>Anyone want to compare charts ? - EdM