Jackie, I am sure you will get some good information from the
list. I am so sorry for your troubles,, and your husbands. I used to be in quite
a bit of pain full time, but I have kept juggling meds until I can at least
function in the daytime. You listed a number of meds which I am not familiar
with, so rather than talk about his meds, let me just tell you what I am on and
maybe something there will help
I take sinemet at 6am
sinemet cr at 7am
ultram, vicodin, celebrex at 7am
mirapex at 8am
sinemet at 10, 2 and 6
sinemet cr at 12 4 and 9
mirapex at 1, and 5
ultram at 12, 6
another celebrex at 6
I am prescribed to take up to 5 more vicodin during the day,
but unless I have over done, or the weather is hurting me, since I have spread
the meds out, I usually don't need nearly that much, I normally take one in the
afternoon, maybe one in the evening, and 2 before I go to sleep.
as the sinemet wears off, my muscles begin to cramp, but I
usually get between 3 to 6 hours of sleep, sometimes even more. this compares to
what I got last year which was 3 hours every other night.
When I am off, Usually I cramp up so hard and fast my right
arm, right leg and face go numb, and while they shake all over I really can't
feel much. Its thegoing off and on which is very painful for me.
the other thing I have done different, and with your husband
in bed will be very difficult to get started, is that I do light exercises daily
- I started with isometric and have now advanced to walking about a half mile a
day. there are some days I cannot do this, and some days I am confined to a
wheelchair, but in general they are much fewer than they were a year ago.
I hope something in this helps you all, and God Bless
bob aka tex
----- Original Message -----
Sent: Saturday, May 06, 2000 8:37
AM
Subject: Help
My husband, Bob, (age 49) diagnosed
eight years ago, had a Pallidotomy (rt. brain) 1997, has been on a steady
decline sine his DBS STN (rt. brain also) in January, 2000. He is
now in Hospice at home.
Aside from the fact that he can hardly
move anything, he is in terrible pain... in his calves, thighs, feet, back,
neck and arms. He has difficulty swallowing his pills so I give them in
applesauce.
He is currently taking:
MS Contin 15 mg every 12
hours
Compazine 10 mg
Roxicet 5/325 every 4
hours as needed
Valium 5 mg, twice a
day
Artane 5 mg, 3 x a
day
Paxil once a day
Seroquel 25 mg. 2 at
bed
Senecot 2 in morning, 2 at
bed
Quinine 325 mg
2 at bed
Dalmane 15 mg. 2 at
bet
-2 reg 25/100
Sinemet
-3 CR 25/100 Sinemet
- the above at various times throughout
the day.
Obviously the pain meds are not working
as he is in such tremendous pain, I must constantly pick him up (200 lbs) and
move him to a different position, usually to the wheelchair, sofa and back to
the hospital bed again, we do this over and over all day and all night
long. If we are lucky he sleeps 3 straight hours, usually 1 - 2 hours
and again wakes up from the muscle cramps.
Needless to say this is an extremely
difficult time (I feel especially sad for our 15 yr. old daughter who is
living is this horrible ordeal). The doctors are puzzled by Bob's pain -
they do not know why he is in such pain therefore they are reluctant to
prescribe any stronger pain meds, so yesterday they added the Valium. To
me and Bob last night his cramps seemed to be worse than before the
Valium.
If anyone has any ideas or thoughts we
would appreciate it.
Sincerely,
Jackie
Gilman
