Re: Jim's readings

[Guest guest]

In a message dated 7/30/1999 5:27:16 PM Eastern Daylight Time,

ottercritter@... writes:

<<

Jim, is it high-carb, or is it low-protein, so as not to interfere with your

Parkinson's meds? Is it true Parkinson's - or an affliction that mimics

Parkinson's? I have seen both. It's a tough call .. you need to decide

which disease represents the greatest risk, I guess. >>

I'm still trying to figure out the high carb bit, don't know about proteins

yet. I've got to sit down with a nutritionist, I guess. I have early

Parkinson's, diagnosed about a year ago (I think, too many things to keep

straight), and am on Amantadine to control it. It works pretty good, and

things have gotten a LOT easier since we moved out of our old house with the

big stairway to the bedrooms. I get what is called " freezing " from PD, it's

when your foot (in my case, the right foot) just stops. Since this happens

when I am walking, going up or down stairs, etc., it can be inconvenient. I

remember several times when I got to the bottom of the stairs a lot quicker

than I planned.

I have spent quite some time on priorities, trying to figure which comes

first. There are some suggested treatments that I have turned down, because

they become a " quality of life " question. Keeping in mind that I have severe

PH, and the latest prognosis is terminal within a year, I have to evaluate

things like my pulmonologist's pushing me to get a trache and use a

ventilator; or the new endo talking about radiation therapy for the Cushings.

On one hand, I believe that just because I am dying doesn't mean I have to

stop living. I want to use my remaining time to do as much ministry work as

I can. I will also continue my advocacy work for the civil rights of people

with disabilities. I am also working to train one of my church's deacons to

take my place in teaching Anger and Stress Management. I am not going to

curl up and just wait to die. If I have to do this work while dragging an

oxygen tank around with me, so be it.

However, I do not see the need to undergo treatments that will make me sicker

than I already am. I have enough radiation in me already to light up a city.

Radiation poisoning is what started most of the health problems in the first

place. My risk factors for surgery are off the scale, so that, plus the fact

that I just cannot see myself tethered to a ventilator combine to say " No " to

the trache.

My docs are great. They are doing everything they can to make me more

comfortable. Getting the BG down is giving me more energy and less of a risk

of infection. I am also pleased that lowering my sugar will help protect my

kidneys, eyes and liver, because I have signed all the paperwork to be an

organ donor. For the moment I am ignoring the doc's suggestion that I take

morphine for pain relief, because it will cloud my reasoning and I need it

all when I am preaching, counseling or one of the other ministry functions.

I am still on the suicide prevention team at a large local lockup, responding

two or three times a week when I have " the duty " . I will also be returning

to the suicide prevention team at the Free Clinic. I cannot see myself being

spaced out when I am trying to talk someone into saving their own life.

Kind of ironic, the closer I get to death, the more time I put in trying to

convince others to live.

Bottom line -- I am glad to do whatever I can to deal with the various

diseases, but within reason. I am very pleased with the drop in blood sugar.

Hopefully we will make progress in the other diseases as well.

Jim

[Guest guest]

Oh, gosh, Jim, you've got Parkinson's TOO? Darn.

So come visit Oregon..we're finally having some sunshine...it's a nice 80

today...eat your hearts out... ('scuse me for being smug :-) Vicki

PS: Anyone else on this list from west coast?

In a message dated 99-07-30 16:43:39 EDT, you write:

<<

As someone with Parkinson's Disease, I am supposed to eat high carb.

With this and all the other conflicting dietary orders, I think I'll give

some nutritionist premature grey hair.

And yes, I do feel much more energetic today, not dragging so much. If only

it didn't feel like 874 degrees outside... >>

[Guest guest]

Jim, you're Something Special! Vicki

[Guest guest]

The doctor is searching around for my old CT records, to see if there was any

tumor showing, but he suspects that I have " micro-cellular " tumors in the

anterior pituitary. The normal course of treatment is exploratory surgery to

find and remove the tumors. Of course, this is not an option. So, we'll find

something else to treat it.

Jim

[Guest guest]

In a message dated 7/30/1999 9:06:22 PM Eastern Daylight Time,

WHIMSY2@... writes:

<<

Oh, gosh, Jim, you've got Parkinson's TOO? Darn. >>

My Web site <A

HREF= " http://hometown.aol.com/revjsutter/myhomepage/index.html " >Got God?</A>

has a fairly inclusive list of the medical problems I have been blessed

with. Some people don't understand why I see these as a blessing; it is

because by having these problems I can more clearly understand what other

people are going through when they are ill, hospitalized or in nursing homes.

At least once a week I do hospital ministry, sitting with people recovering

from surgery, undergoing treatments, or just being seriously ill.

By having these illnesses, I can understand and empathize with what these

people are going through.

I have helped families pray, I have held their hands as their loved ones pass

from this life, or, when someone is to die with no family at their side, I

sit with them, pray with them, and hold their hand as they die so that they

know someone was there who cared. They can pass from this life knowing that

love let them go and that love is there to greet them in Heaven.

Normally I rejoice that this person has now gone on to a better life, filled

with peace, love and beauty beyond the imagination. But still, after many

years of hospital ministry, I still get upset when I stay with a child as

they pass away. I was taught in seminary to maintain a neutral, strong

personality, or rather, a facade, in all situations. But watching a child

die penetrates the facade, and at 43 hardened years old, a veteran decorated

many times for bravery above and beyond the call of duty, I still cry.

Sorry, a maudlin night. Such a situation happened yesterday, I sat with the

child whose parents could not be there, until he was finally at peace and

with God. Occupational hazard -- I sometimes carry the job home with me.

Jim

[Guest guest]

Jim, that was an excellent post. You have really examined your situation,

and I think you have a very clear sense of what needs to be done, and what

is most important. I will do some digging for you as well. I assume from

your mention of treatment for Cushing's that your doctor has determined that

it is not caused by a tumor ... too bad. I keep hoping to find a " simpler "

fix to one of your probs ... I have little experience in common, other than

the diabetes. I know that when your diabetes is out of control, you are one

sick puppy. So I am reassured that you are feeling much, much better.

Please keep posting every day and letting us know how you are progressing.

We are very concerned.

Hugs,

Susie

[Guest guest]

RevJSutter@... wrote:

>

> Sorry, a maudlin night. Such a situation happened yesterday, I sat with the

> child whose parents could not be there, until he was finally at peace and

> with God. Occupational hazard -- I sometimes carry the job home with me.

>

> Jim

How very difficult it must be for you to sit by a child's hospital

bedside. How fortunate for that child that you were able to be there.

I'm at a loss for words. There must be a special place in Heaven for

you, Jim. God bless.

[Guest guest]

oh jim - it must be so hard for you - at least the child was not alone when

he went to the lord - you do such a wonderful thing - i am praying that

your sugars will come down for you with the new insulin - tell me, could

your readings be high this morning from the stress of last night?

blessings

nancy