My Story August 20, 2008 -
August 20th: Sorry been so long without communication. Sometimes
nothing to say and then sometimes too much to say. Well let's see.
Had Cat Scans done and Dr. Cheng found a pinched nerve in the neck.
So she wants me to see a neurosurgeon to see if he thinks an operation
is necessary. She knows I have Parkinson's but wants to rule out any
other possibilities. Dr. Cheng also increased my dosage to a full tablet
once a day and it really helped. My tremors have to be reduced at least
50 %. Just think the other doctor had me taking 11 pills a day with no
help. Sure glad to have second opinion. An interesting story to tell is I
used the Blue Racer No 9 to get into the office and the nurse was there
to help. After chatting and waiting a while I felt my legs relax and so I
told to nurse to watch something, and I walked very normally over to
her desk and back. But after going through some nerve conduction test
the Dr. Had me walk and I was back to trouble. She said use the walker
it is too dangerous not to.
By the way, if you go to the home page and click on Parkinson's, you will
go to a page with a lot of info on Parkinson's, look down the list to My
Symptoms click and that page will give you all the symptoms of
Parkinson's and my symptoms are in Red.
nothing to say and then sometimes too much to say. Well let's see.
Had Cat Scans done and Dr. Cheng found a pinched nerve in the neck.
So she wants me to see a neurosurgeon to see if he thinks an operation
is necessary. She knows I have Parkinson's but wants to rule out any
other possibilities. Dr. Cheng also increased my dosage to a full tablet
once a day and it really helped. My tremors have to be reduced at least
50 %. Just think the other doctor had me taking 11 pills a day with no
help. Sure glad to have second opinion. An interesting story to tell is I
used the Blue Racer No 9 to get into the office and the nurse was there
to help. After chatting and waiting a while I felt my legs relax and so I
told to nurse to watch something, and I walked very normally over to
her desk and back. But after going through some nerve conduction test
the Dr. Had me walk and I was back to trouble. She said use the walker
it is too dangerous not to.
By the way, if you go to the home page and click on Parkinson's, you will
go to a page with a lot of info on Parkinson's, look down the list to My
Symptoms click and that page will give you all the symptoms of
Parkinson's and my symptoms are in Red.
August 21: Yesterday was not a good day. We need to learn a new term
it is called "freezing" and if you will remember back to the time I was
walking and stopped and had to sit on the floor, that was the first
indication. I can remember that my Dad was walking and fell flat on his
face, now I know why. I was sitting down on a lawn chair on front porch
and thank goodness Mil was with me. We decided to go in and I could
not stand up. Understand my legs did not hurt, but they were useless.
My brain was not telling my legs I wanted to stand up. I pushed with my
arms to the max and could not stand up. Mil asked if she should pick
me up and I realized that if she did, I would fall down because the legs
would not support me.
There were times that I told Mil that it was like magnets holding my feet
to the floor, well the Parkinson's term for it is Gluing. Your feet are
glued to the floor hence freezing. After a while maybe 5-10 minutes the
legs would stand up. This happened later in the day when sitting in
back yard, did everything possible to stand up and could not do so.
Again realized that my brain was not telling my legs what to do. Could
do nothing else but lay on the couch or bed for the day. Just to add to
the days woes another new symptom showed up and that is head
hanging. The head is very heavy and the neck will not hold it up. Hey
this is getting ugly too fast. Those that pray please pray, those that
don't can wish me luck.
it is called "freezing" and if you will remember back to the time I was
walking and stopped and had to sit on the floor, that was the first
indication. I can remember that my Dad was walking and fell flat on his
face, now I know why. I was sitting down on a lawn chair on front porch
and thank goodness Mil was with me. We decided to go in and I could
not stand up. Understand my legs did not hurt, but they were useless.
My brain was not telling my legs I wanted to stand up. I pushed with my
arms to the max and could not stand up. Mil asked if she should pick
me up and I realized that if she did, I would fall down because the legs
would not support me.
There were times that I told Mil that it was like magnets holding my feet
to the floor, well the Parkinson's term for it is Gluing. Your feet are
glued to the floor hence freezing. After a while maybe 5-10 minutes the
legs would stand up. This happened later in the day when sitting in
back yard, did everything possible to stand up and could not do so.
Again realized that my brain was not telling my legs what to do. Could
do nothing else but lay on the couch or bed for the day. Just to add to
the days woes another new symptom showed up and that is head
hanging. The head is very heavy and the neck will not hold it up. Hey
this is getting ugly too fast. Those that pray please pray, those that
don't can wish me luck.
August 21: Well better day today. Have been able to get around with the
Blue Racer No 9. Had to go to Pain Doctor because things were not
working right. They found two broken leads and this will mean surgery on
September 15th. Not as serious as original surgery, recovery should be
quicker. Can anything else go wrong. Oh I guess it can. hahaha The
freezing legs appear to be a problem and hope that symptom slows down.
Was almost stuck in restaurant but it gave in and was able to move.
Blue Racer No 9. Had to go to Pain Doctor because things were not
working right. They found two broken leads and this will mean surgery on
September 15th. Not as serious as original surgery, recovery should be
quicker. Can anything else go wrong. Oh I guess it can. hahaha The
freezing legs appear to be a problem and hope that symptom slows down.
Was almost stuck in restaurant but it gave in and was able to move.
August 22: The SST was over yesterday (Super Support Team). The SST
really work hard to make me more able to cope. And we learn things
together, by working on ideas and then trying them. For example, a lot of
freezing was going on yesterday and I was walking from one side of the
backyard over to a chair and my legs froze. Well I am standing in one spot
locked in. One of the SST members picked me up and another SST picked
up my legs and that unlocked them. The next time they froze I was sitting
down so they just picked up my leg from the knee and it unlocked them.
The next time it froze I just picked up my leg at the knee and it worked. As
long as I am sitting down the freezing is not a problem anymore. Aren't the
SST wonderful. Found that a freeze while standing has to be unlocked by
someone else because I can not pick up the leg.
The next big problem of the sagging head. Well they asked me to pick it
up with my hand and I put them under my chin and it did not work. So they
moved my head for me and, as the legs, the neck unlocked. We all thought
some more and we tried having me push my head back by pushing on my
forehead instead of the chin. It worked. We can only guess that by
moving my body it is sending a signal to the brain of what we want it to do.
Thank You SST.
really work hard to make me more able to cope. And we learn things
together, by working on ideas and then trying them. For example, a lot of
freezing was going on yesterday and I was walking from one side of the
backyard over to a chair and my legs froze. Well I am standing in one spot
locked in. One of the SST members picked me up and another SST picked
up my legs and that unlocked them. The next time they froze I was sitting
down so they just picked up my leg from the knee and it unlocked them.
The next time it froze I just picked up my leg at the knee and it worked. As
long as I am sitting down the freezing is not a problem anymore. Aren't the
SST wonderful. Found that a freeze while standing has to be unlocked by
someone else because I can not pick up the leg.
The next big problem of the sagging head. Well they asked me to pick it
up with my hand and I put them under my chin and it did not work. So they
moved my head for me and, as the legs, the neck unlocked. We all thought
some more and we tried having me push my head back by pushing on my
forehead instead of the chin. It worked. We can only guess that by
moving my body it is sending a signal to the brain of what we want it to do.
Thank You SST.
August Something: Am considering not writing anymore because I fear it is
becoming gruesome. Was walking into the house and when I got to the door, I
forgot what to do. I was staring at the doorknob because I knew it had
something to do with it but could not figure it out. Mil asked if I needed some
help and she opened the door. Everything was fine after that. Next, she was
working on albums and showed me a picture from a cruise. I saw a man in a
white jacket and thought he must be a waiter or the captain of the ship I
asked Mil "Who is the man" and she advised me that he is the son in law that I
love from the bottom of my heart. I don't think I want to talk about this anymore.
becoming gruesome. Was walking into the house and when I got to the door, I
forgot what to do. I was staring at the doorknob because I knew it had
something to do with it but could not figure it out. Mil asked if I needed some
help and she opened the door. Everything was fine after that. Next, she was
working on albums and showed me a picture from a cruise. I saw a man in a
white jacket and thought he must be a waiter or the captain of the ship I
asked Mil "Who is the man" and she advised me that he is the son in law that I
love from the bottom of my heart. I don't think I want to talk about this anymore.
August 29th: "We have nothing to fear but fear itself." (quote from
Winston Churchill) I guess the last message scared the Poo Poo out of
me. My SST was over on my birthday for a "couple" of drinks and then we
went up to the Freshmen's football game to watch Austin play. We got a
big step out of the way by taking the wheelchair and using that. I don't
know why we have to buy a motorized one when the SST team can push
me faster.. The feet are not freezing as much but the hips are.. Can
become stuck in a chair if by myself , Let's be realistic, this Parkinson's
can be very scary for a person that has been very active in his life up to 9
months ago. So sometimes I guess I will be writing things while
depressed. My hope is up today so its a new day. "And every day is a gift,
that is why they call it the present"
Winston Churchill) I guess the last message scared the Poo Poo out of
me. My SST was over on my birthday for a "couple" of drinks and then we
went up to the Freshmen's football game to watch Austin play. We got a
big step out of the way by taking the wheelchair and using that. I don't
know why we have to buy a motorized one when the SST team can push
me faster.. The feet are not freezing as much but the hips are.. Can
become stuck in a chair if by myself , Let's be realistic, this Parkinson's
can be very scary for a person that has been very active in his life up to 9
months ago. So sometimes I guess I will be writing things while
depressed. My hope is up today so its a new day. "And every day is a gift,
that is why they call it the present"
August 31: Everyone came over for my birthday swim and cook party. Here is an
important thing. I was in kitchen sitting down and Lori was the first to come in
and i was hugging and kissing and turn and got the surprise of my life There was
My Sister Vicki. I hugged and hugged and kissed and kissed. She came to see
me and join the SST. I had a great fantastic birthday. Everyone gave me "500
hundred dollars" for cruise gambling (probably will spend more on drinking.)
Great day.
important thing. I was in kitchen sitting down and Lori was the first to come in
and i was hugging and kissing and turn and got the surprise of my life There was
My Sister Vicki. I hugged and hugged and kissed and kissed. She came to see
me and join the SST. I had a great fantastic birthday. Everyone gave me "500
hundred dollars" for cruise gambling (probably will spend more on drinking.)
Great day.
September 2nd: Both hands are clinching badly. Was advised by one of the
SST members who is a physical therapist that if they are not straightened
out that they will stay that way. (hard to pick nose with no fingers) Vicki
checked around and found a proper splint but they need a prescription so
we called Dr. Cheng's office and they want me to go for another neck check
(this is becoming a pain in the neck) and then come in to see her so she can
prescribe the proper support. Going Sept 3rd to get both things done.
Incidentally I am able to type first thing when I wake up (well not really first
thing) so I get on here very early or don't get on at all... hugs to all
SST members who is a physical therapist that if they are not straightened
out that they will stay that way. (hard to pick nose with no fingers) Vicki
checked around and found a proper splint but they need a prescription so
we called Dr. Cheng's office and they want me to go for another neck check
(this is becoming a pain in the neck) and then come in to see her so she can
prescribe the proper support. Going Sept 3rd to get both things done.
Incidentally I am able to type first thing when I wake up (well not really first
thing) so I get on here very early or don't get on at all... hugs to all
September 5th: How Rude ! She sent me to the hospital for another test.
They took a Mylar gram, and another cat scan, the good thing about it is
they ruled out any other problems except Parkinson's. I am just going into
the record book of the fastest Parkinson's ever. Now you can guess, that
my SST was there in full force.
OK, so nothing wrong except Parkinson's and we have to figure out how we
are going to keep up a quality of life that is acceptable. Well my SST are
working diligently, I now have a ramp at the back door so I can get out and in
easier. I have a neck brace so my head doesn't fall off. Got a longer straw
for my margarita's, and am now only waiting for the cruise. Love.
They took a Mylar gram, and another cat scan, the good thing about it is
they ruled out any other problems except Parkinson's. I am just going into
the record book of the fastest Parkinson's ever. Now you can guess, that
my SST was there in full force.
OK, so nothing wrong except Parkinson's and we have to figure out how we
are going to keep up a quality of life that is acceptable. Well my SST are
working diligently, I now have a ramp at the back door so I can get out and in
easier. I have a neck brace so my head doesn't fall off. Got a longer straw
for my margarita's, and am now only waiting for the cruise. Love.
Sept 7th: Upon leaving hospital the doctor prescribe senemet (wrong spelling)
again. It worked again and I had a great day. The next day was not as great but
much better than before the drug. Vicki left town, she couldn't take it anymore LOL.
I want to thank my SST for being the VERY GOOD people they are. Am seeing the
doctor on Monday and will report then.....
again. It worked again and I had a great day. The next day was not as great but
much better than before the drug. Vicki left town, she couldn't take it anymore LOL.
I want to thank my SST for being the VERY GOOD people they are. Am seeing the
doctor on Monday and will report then.....
Sept 9th: Dr. prescribed a ritual of drugs. These probably not spelled right
because they are not in front of me. But, Take Promo dine at night for tremors,
Clonipin at night for clinching fists and Sinemet twice a day. Well they are doing
well. My hands close but I can open myself. Tremors not as strong. The DR. gave
us a tip on freezing. When I freeze, touch the legs. Mil & I were out to the bank,
wall mart, breakfast and the library. Good day ! At library, I was tired out and my
legs froze so I took my hand and hit the leg just below the knee and it broke lose.
This has been one of my "dangerous" times and now we have an answer for that.
Things are definitely looking up.
because they are not in front of me. But, Take Promo dine at night for tremors,
Clonipin at night for clinching fists and Sinemet twice a day. Well they are doing
well. My hands close but I can open myself. Tremors not as strong. The DR. gave
us a tip on freezing. When I freeze, touch the legs. Mil & I were out to the bank,
wall mart, breakfast and the library. Good day ! At library, I was tired out and my
legs froze so I took my hand and hit the leg just below the knee and it broke lose.
This has been one of my "dangerous" times and now we have an answer for that.
Things are definitely looking up.
September 10th: Have had some great days. I could not ask for more. Can
stand up from chair. Can become unfrozen. Hand don't clinch much and if they
do I can open them myself. Head tends to drop but soft neck brace helps. No
more of what I called "dangerous" times, feel like in complete control. I must
learn to not bend over it appears to drop the dopamine. With surgery coming
up I wont be able to bend over any way. I feel very much back to my old self.
Happy days are here again.
stand up from chair. Can become unfrozen. Hand don't clinch much and if they
do I can open them myself. Head tends to drop but soft neck brace helps. No
more of what I called "dangerous" times, feel like in complete control. I must
learn to not bend over it appears to drop the dopamine. With surgery coming
up I wont be able to bend over any way. I feel very much back to my old self.
Happy days are here again.
Sept 13th: Still doing real good. Cut to half clonipin so wouldn't be so
sleepy. Have walked without walker, small distances. I think the worst is
over and can go on with normal progression of Parkinson's ! Very Happy.
sleepy. Have walked without walker, small distances. I think the worst is
over and can go on with normal progression of Parkinson's ! Very Happy.
Sept 18th Doing great !! Had interesting experience this morning, went for
blood test for spinal cord surgery so did not take sinemet at 7am. By 8am was
back to old self, shuffling, freezing. Got back at 9 and took the medicine, within
an hour was back to normal self. Two things, Take medicine on time all the time
and it proves the medicine is doing it's job.
blood test for spinal cord surgery so did not take sinemet at 7am. By 8am was
back to old self, shuffling, freezing. Got back at 9 and took the medicine, within
an hour was back to normal self. Two things, Take medicine on time all the time
and it proves the medicine is doing it's job.
Sept 22nd Went through couple days of not being my good self.
Tougher walking, vigorous tremors etc., Guess Dr Jeckle and Dr. Hyde
was at work again. Just have to watch the overdoing. Chill out... Lay
Back...
Tougher walking, vigorous tremors etc., Guess Dr Jeckle and Dr. Hyde
was at work again. Just have to watch the overdoing. Chill out... Lay
Back...