My Story
June 21 to:
June 21 to:
June 21st. As most of you know, Kylie has a muscle tightening action that hasn't been
diagnosed by Doctors. I have called it the "Wiggles" just so we have a name for it. We
really hope she will grow out of it. Well, it is so funny that she now says that " Poo has the
wiggles" and she tries to help me by holding my hand very tight. When we are together,
you must ask Kylie what my wiggles are like. It will make you laugh out loud.
Last night was the first night after taking the new medicine. Was up until 12 midnight,
without taking a nap during the day. Only woke up at least 5 times during the night.. Very
hard night. But feel so good during the day, I look forward to checking more days and
nights for my body to adjust. Well my "wiggles" are very rough, it would appear that the
new medicine has knocked out the good effects of the Sinemet. I am willing to adjust
myself, as long as this good feeling keeps on.
June 22nd: My shaking is hurting the shoulder. So have faxed the Doctor to see If I need
another appointment to change the Sinemet or wait out the shakes until next appointment
in three weeks.
June 26th: Poo has felt Poopy ! Well the new medicine Provigil stopped working. What the
heck is going on. Not only felt worse but shaking continued. Also Provigil is not covered
by insurance. Oh My. Got a prescription for Comtan 200 mg. Went to Doctor today and was
given samples of Provigil. Now going to take Sinemet 4 times a day, Comtan 3 times a day
and Provigil 2 times a day. The Theory is Sinemet makes Dopamine, Comtan makes the
dopamine go to the brain which controls the tremors and the Provigil takes care of the
fatigue that goes with Parkinson's.
June 28: Taking 9 pills a day and still not feeling good. Well guess what ! All medicine is
poison, so pick your poison very carefully. I figured to stop all medicine and start from
scratch. I have stopped all medicine and don't feel any worse. Will let you know.
July 1: Still going along with no medicine. Don't feel any better and don't feel any worse.
But taking less poison so will continue for a while.
July 4: Not taking any medicine. Getting to point that I think I need something. Tremors
and nervousness main problems. What do you think? You know as much as the Doctors
do, after all they are just practicing, so I will be open to any suggestion.
July 5th: Mil said I need the Provigil, so I took one to see what happens, remember they
stopped working after four days. Well Provigil is surely a stimulant, my mind is very much
alert, could remember things even from the past. It is a feel good pill, because I talk my
head off all day. I made Mil laugh a hundred times so it was a good day. The shaking was
very bad. Which reminded me that if I am correct, my father shook when he took a cup in
his hand, but I don't remember him trembling when hands at rest. I tremble most when
hands are at rest. I thought maybe the stimulant was a little too much, being so high all day
and not going to sleep until very late. So am planning not to take anything today to see
what happens and then try Half a pill tomorrow. By the way, I always said I could take the
shaking if I felt healthy, well I will tell you, the arm and hand get very sore. The muscles are
shaking so they are working all day. Sometimes I would do anything to stop the tremors.
July 6: Half pill did not work. Felt lousy all day. Found a doctor at the Fort Worth Clinic that
is a neurologist with extra training in motion disorders. Will think further about changing
doctors and the means to do so. Maybe depressed because thinking 90 days ahead.
July 12: Sorry taking so long, but have come up with a working option on the medicine.
On the Health board linked above I found a person that was prescribed 25 mg of Sinemet
every two hours for the early stage of Parkinson's. My tablets were 100 mg to be taken four
times a day so Mil broke them down to quarters. Saw an improvement if taken every two
hours. After couple days we were thinking about the Comtran that was suppose to take the
Dopamine to the brain. It was for 200 mg, three times a day, we broke it down to quarters
also for 50 mg. In taking both medicines every two hours have got the most control on
shaking we have ever had. We also doubled the Prozac and it seems to have helped.
At end of day I am taking 200 mg of Sinemet and 400 hundred Comtran instead of 400
Sinemet and 600 comtran.
July 17th: Too much information. How about I returned to the amount of medicine the
doctor prescribed and the shaking was very vigorous and I did not feel good.
So made the decision to not take any medicine., Went to family Doctor to get referral to
Neurologist with motion disorder training. They are more familiar with Parkinson's. Have
appointment for August 15th. In mean time am not doing very well at all. Off balance, right
side not working, vigorous shaking, and body tires very easily. Example, change pants,
attach battery charger and am exhausted. Wish me well.
July 20th: Discovered an interesting thing. I have low blood pressure. No wonder so
exhausted all the time. Am going to regular doctor Monday to see what is going on.
July 21st; Changed mind, blood pressure now normal. Have been off all medicine since the
17th. Parkinson shaking slowed way down for two days, next two days very strong.
ANYBODY want to tell me what is going on?
July 26th: Left credit card at Wal-Marts, very unusual for me. Today woke up and know
there is another problem but cant put finger on it. Don't want to think today. Too much
work to think.
August 3rd: Thanks to the most caring person in the world, Margee Bobo, She was able to
get an earlier appointment to the new doctor. SO MUCH BETTER. Very obvious she knows
what she is doing.
My apologies for taking so long to get back to this. But have had my problems, Maybe my
sisters could remind me about Dad's walking. I know he was in a wheelchair, but can't
remember how he walked when he did.
Well I have a FFFFNNNNN problem. I have now gone to the walking problems. I am telling
you if you want any pictures of me you better get them soon because things are going to
get ugly. I am not crying wolf here, This is scaring the shite out of me. It is very obvious
that I have had Parkingson's longer then last December. Probably 5years or more.
A little side note to recognise some people. Mitch spending his birthday in the hospital
and Margee, Johnny's anniversary.
August 4th: Wouldn't it be nice if these changes came a little at a time so we could adjust.
My feet now move about 4 - 6 inches a step. So on the cruise, I will lead the way. lol
There is no pain involved until the muscles get tired and then the ache is very rough.
Margee is checking out a walker because I wouldn't dare wear shoes outside of the house,
I need to shuffle and shuffle doesn't work in shoes. Instead of a walker, I am thing about a
electric scooter so I can race Kylie around the house.
We called the Doctor to see if anything we can do and was basically told that they
diagnosed Parkinson's and this is the way it is. The speed that it is growing might level off
but other than that live with it. Some patience think that the medicine we get will slow
down the growth but not true, all the doctor is doing is "maintaining" ( their words) so
really they are making us as comfortable as they can.
August 5th: Had just a wonderful experience yesterday. Had my usual day and then went
into the pool (have to wear life belt always) and did some exercise, holding the side I am
able to lift left leg pretty high but the right is rigid at the hip. I could move about a foot and
then Mil would pick the leg up and it would take the other leg off the bottom. Walk around a
lot in the pool for exercise and got my self tired. When going to step up Mil had to lift the
leg above the knee for me to get on a step. Went in and took a rest at the computer. Then
took a tray to the kitchen and could not get there, I knew if i tried to walk some more I
would collapse so I sat on the floor and waited. Mil helped me to bed and I rested .
Told you this is going to be ugly. Mil is my hero !
diagnosed by Doctors. I have called it the "Wiggles" just so we have a name for it. We
really hope she will grow out of it. Well, it is so funny that she now says that " Poo has the
wiggles" and she tries to help me by holding my hand very tight. When we are together,
you must ask Kylie what my wiggles are like. It will make you laugh out loud.
Last night was the first night after taking the new medicine. Was up until 12 midnight,
without taking a nap during the day. Only woke up at least 5 times during the night.. Very
hard night. But feel so good during the day, I look forward to checking more days and
nights for my body to adjust. Well my "wiggles" are very rough, it would appear that the
new medicine has knocked out the good effects of the Sinemet. I am willing to adjust
myself, as long as this good feeling keeps on.
June 22nd: My shaking is hurting the shoulder. So have faxed the Doctor to see If I need
another appointment to change the Sinemet or wait out the shakes until next appointment
in three weeks.
June 26th: Poo has felt Poopy ! Well the new medicine Provigil stopped working. What the
heck is going on. Not only felt worse but shaking continued. Also Provigil is not covered
by insurance. Oh My. Got a prescription for Comtan 200 mg. Went to Doctor today and was
given samples of Provigil. Now going to take Sinemet 4 times a day, Comtan 3 times a day
and Provigil 2 times a day. The Theory is Sinemet makes Dopamine, Comtan makes the
dopamine go to the brain which controls the tremors and the Provigil takes care of the
fatigue that goes with Parkinson's.
June 28: Taking 9 pills a day and still not feeling good. Well guess what ! All medicine is
poison, so pick your poison very carefully. I figured to stop all medicine and start from
scratch. I have stopped all medicine and don't feel any worse. Will let you know.
July 1: Still going along with no medicine. Don't feel any better and don't feel any worse.
But taking less poison so will continue for a while.
July 4: Not taking any medicine. Getting to point that I think I need something. Tremors
and nervousness main problems. What do you think? You know as much as the Doctors
do, after all they are just practicing, so I will be open to any suggestion.
July 5th: Mil said I need the Provigil, so I took one to see what happens, remember they
stopped working after four days. Well Provigil is surely a stimulant, my mind is very much
alert, could remember things even from the past. It is a feel good pill, because I talk my
head off all day. I made Mil laugh a hundred times so it was a good day. The shaking was
very bad. Which reminded me that if I am correct, my father shook when he took a cup in
his hand, but I don't remember him trembling when hands at rest. I tremble most when
hands are at rest. I thought maybe the stimulant was a little too much, being so high all day
and not going to sleep until very late. So am planning not to take anything today to see
what happens and then try Half a pill tomorrow. By the way, I always said I could take the
shaking if I felt healthy, well I will tell you, the arm and hand get very sore. The muscles are
shaking so they are working all day. Sometimes I would do anything to stop the tremors.
July 6: Half pill did not work. Felt lousy all day. Found a doctor at the Fort Worth Clinic that
is a neurologist with extra training in motion disorders. Will think further about changing
doctors and the means to do so. Maybe depressed because thinking 90 days ahead.
July 12: Sorry taking so long, but have come up with a working option on the medicine.
On the Health board linked above I found a person that was prescribed 25 mg of Sinemet
every two hours for the early stage of Parkinson's. My tablets were 100 mg to be taken four
times a day so Mil broke them down to quarters. Saw an improvement if taken every two
hours. After couple days we were thinking about the Comtran that was suppose to take the
Dopamine to the brain. It was for 200 mg, three times a day, we broke it down to quarters
also for 50 mg. In taking both medicines every two hours have got the most control on
shaking we have ever had. We also doubled the Prozac and it seems to have helped.
At end of day I am taking 200 mg of Sinemet and 400 hundred Comtran instead of 400
Sinemet and 600 comtran.
July 17th: Too much information. How about I returned to the amount of medicine the
doctor prescribed and the shaking was very vigorous and I did not feel good.
So made the decision to not take any medicine., Went to family Doctor to get referral to
Neurologist with motion disorder training. They are more familiar with Parkinson's. Have
appointment for August 15th. In mean time am not doing very well at all. Off balance, right
side not working, vigorous shaking, and body tires very easily. Example, change pants,
attach battery charger and am exhausted. Wish me well.
July 20th: Discovered an interesting thing. I have low blood pressure. No wonder so
exhausted all the time. Am going to regular doctor Monday to see what is going on.
July 21st; Changed mind, blood pressure now normal. Have been off all medicine since the
17th. Parkinson shaking slowed way down for two days, next two days very strong.
ANYBODY want to tell me what is going on?
July 26th: Left credit card at Wal-Marts, very unusual for me. Today woke up and know
there is another problem but cant put finger on it. Don't want to think today. Too much
work to think.
August 3rd: Thanks to the most caring person in the world, Margee Bobo, She was able to
get an earlier appointment to the new doctor. SO MUCH BETTER. Very obvious she knows
what she is doing.
My apologies for taking so long to get back to this. But have had my problems, Maybe my
sisters could remind me about Dad's walking. I know he was in a wheelchair, but can't
remember how he walked when he did.
Well I have a FFFFNNNNN problem. I have now gone to the walking problems. I am telling
you if you want any pictures of me you better get them soon because things are going to
get ugly. I am not crying wolf here, This is scaring the shite out of me. It is very obvious
that I have had Parkingson's longer then last December. Probably 5years or more.
A little side note to recognise some people. Mitch spending his birthday in the hospital
and Margee, Johnny's anniversary.
August 4th: Wouldn't it be nice if these changes came a little at a time so we could adjust.
My feet now move about 4 - 6 inches a step. So on the cruise, I will lead the way. lol
There is no pain involved until the muscles get tired and then the ache is very rough.
Margee is checking out a walker because I wouldn't dare wear shoes outside of the house,
I need to shuffle and shuffle doesn't work in shoes. Instead of a walker, I am thing about a
electric scooter so I can race Kylie around the house.
We called the Doctor to see if anything we can do and was basically told that they
diagnosed Parkinson's and this is the way it is. The speed that it is growing might level off
but other than that live with it. Some patience think that the medicine we get will slow
down the growth but not true, all the doctor is doing is "maintaining" ( their words) so
really they are making us as comfortable as they can.
August 5th: Had just a wonderful experience yesterday. Had my usual day and then went
into the pool (have to wear life belt always) and did some exercise, holding the side I am
able to lift left leg pretty high but the right is rigid at the hip. I could move about a foot and
then Mil would pick the leg up and it would take the other leg off the bottom. Walk around a
lot in the pool for exercise and got my self tired. When going to step up Mil had to lift the
leg above the knee for me to get on a step. Went in and took a rest at the computer. Then
took a tray to the kitchen and could not get there, I knew if i tried to walk some more I
would collapse so I sat on the floor and waited. Mil helped me to bed and I rested .
Told you this is going to be ugly. Mil is my hero !
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August 8th: Had a great day today. Walked better, saw Elijah, felt better.
Stronger.
I think it was all the rest I had on the 6th & 7th. Fatigue is very much a
part of Parkinson's so will have to keep that in mind. I hope tomorrow is
as good as today... Got a Cadillac Walker, named it Blue Racer #9, Love
to all.
Stronger.
I think it was all the rest I had on the 6th & 7th. Fatigue is very much a
part of Parkinson's so will have to keep that in mind. I hope tomorrow is
as good as today... Got a Cadillac Walker, named it Blue Racer #9, Love
to all.
August 10th: Miracle ! Can't understand it but love it. Here is my story, at
Midnight was up for about an hour, usual shuffle walk. At 3am the same, and
then morning came. Got out of bed and walked normal. Surprise. Lifted my
right knee, couldn't do that before. I have walked very close to normal all day.
Hip hurts, seems that maybe something loosened there. But mainly think it is
the rest. (maybe my lucky Blue Racer #9 helped me move my leg better and it
got released) Whatever, just give me a few more days like this and I will be able
to have time to adjust to everything.
Midnight was up for about an hour, usual shuffle walk. At 3am the same, and
then morning came. Got out of bed and walked normal. Surprise. Lifted my
right knee, couldn't do that before. I have walked very close to normal all day.
Hip hurts, seems that maybe something loosened there. But mainly think it is
the rest. (maybe my lucky Blue Racer #9 helped me move my leg better and it
got released) Whatever, just give me a few more days like this and I will be able
to have time to adjust to everything.
August 12th. Went back to shuffle and shake. Yes am getting some exercise viz;
Swimming Pool, Stationary Bike (about two minutes) and even walked around the
block yesterday with my Blue Racer and Mil. Not much else to say mainly off my feet
today....So happy for the couple of days.
Swimming Pool, Stationary Bike (about two minutes) and even walked around the
block yesterday with my Blue Racer and Mil. Not much else to say mainly off my feet
today....So happy for the couple of days.
August 13th: New experiences today. Could not lift my foot one inch
from ground but went to Wal- Marts and the show. We really needed to
get out. Learned to do Wal-marts this way, stopped in front of store, Mill
went in to see if "White hair's go cart " was available. She found one
so I dragged my leg inside and got on the cart and waited for her to
park. Spent too much but got a horn for the Blue Racer #9. Then we
went to dollar show and saw "Vegas" it was very good. Took Blue Racer
into the show and took top row and put ole Blue behind my seat.
Interesting thing is that during the show, all of a sudden, I could lift my
knee. Just how does this Parkinson's work. After movie had to shuffle
out of show again. Think of poor Mil having to do all this and then
think about me putting up with her driving. LOL
from ground but went to Wal- Marts and the show. We really needed to
get out. Learned to do Wal-marts this way, stopped in front of store, Mill
went in to see if "White hair's go cart " was available. She found one
so I dragged my leg inside and got on the cart and waited for her to
park. Spent too much but got a horn for the Blue Racer #9. Then we
went to dollar show and saw "Vegas" it was very good. Took Blue Racer
into the show and took top row and put ole Blue behind my seat.
Interesting thing is that during the show, all of a sudden, I could lift my
knee. Just how does this Parkinson's work. After movie had to shuffle
out of show again. Think of poor Mil having to do all this and then
think about me putting up with her driving. LOL