I would like to thank Barb for her welcome. As she requested, I will
introduce myself. I am Juelie McLean (50) of Bozeman, Montana. It is my
husband, Dan, that has Parkinsons. Dan turned 50 in April and was
diagnosed shortly thereafter with PD. I thought the last 5-6 years that he
was dealing with mid-life crisis and depression...his personality had
changed so. He has been extremely healthy all his life....rarely gets
colds or flu. He is a very scheduled person....early to bed, early to
rise....unlike me ;o) Although he did not tell me, he made an appointment
for a physical in December because of how he had been feeling for some
time. His physical came back with everything in perfect order. It was
this spring that I became disturbed by some physical symptoms I was
noticing. He seemed to stoop forward a bit and was not swinging his arms
at all. He held his left shoulder up higher than the right all the time.
Said it was hurting him. He was starting to do things so slowly. Even his
touch changed.....his fingers felt clammy....not smooth and dry. He
displayed occasional tremor in the hands in a resting position, but he
always attributed that to having too much coffee. We thought maybe it was
hypoglycemia. He did have a form of hepititus as a child and had a thyroid
problem as a young person, but had gotten over both uneventfully. He grew
up on a farm and was involved with the farm work as a very young
boy...which of course involved working with pesticides and herbicides. In
college he was given an assistantship while working on his Master's in
soils. It was with the weed research lab in which he was again around all
these chemicals. After college he joined the Soil Conservation Service and
was a field soil scientist until about 11 years ago when he moved into an
regional office position here in Bozeman, Montana. To get back to his time
of diagnosis....Because he hadn't mentioned any of his physical symptoms to
the doctor at the physical, I made an appointment to see our family
physician again. He gave Dan a very thorough exam and then started to move
his elbows and shoulder about. He told me to feel...the ratcheting
movement. Then he said to us....out of the blue, "I think you may have
Parkinson's Disease. I would like you to see a Neurologist to confirm this
diagnosis.". Needless to say, my stomach dropped into my toes....I went
cold as ice. We were expecting something like hypoglycemia. We made an
appointment with a neuro in Billings, MT (Montana's largest city) and then
I went out onto the internet to learn all I could. At our appointment in
Billings, the doctor had Dan take an MRI which ruled out any other
possibilities. He then confirmed the diagnosis of Parkinson's. He gave us
a packet from Requip that contained a video, 3 weeks samples and a night
light. He said that witin 3-5 days Dan should start feeling some
symptomatic relief. This didn't sound right to me with what I had been
reading, but who was I to not believe a doctor. So home we went...and even
by the end of the 3rd week when all the medacine was gone, Dan was not
feeling any better. The doctor was concerned. We went back, but this time
I had read up on Requip and it said that the samples were not even
theropudic dosage. It was on an average of 8 weeks when symptoms were
improved and it was around 8mg a day of Requip that most people got
symptomatic relief. I had also read a lot about Selegaline (Eldapryl). I
asked the doctor 2 times how many patients around 50 years of age he
treated before he finally told me that Dan was the only one. I asked about
the Selegaline and he looked at me like it was none of my business. He
then excused himself and left the room for about 10-15 minutes. When he
returned, he had the Selegaline and said he had confered with his collegue.
I asked how many patients around 50 years old his collegue treated and he
said he didn't know....maybe 2-3. When we left his office that time, we
decided that this doctor seemed threatened by how much we had learned about
Parkinson's and decided we needed to find another doctor. After many phone
calls, we decided to go to the Parkinson's Institute in Sunnyvale, CA. It
is deemed a "center of excellance" and since they only treat Parkinson's
and parkinson's related disorders and do research, we felt we would get
someone who had experience. We saw a Dr. Petsinger (woman) and found her
very knowlegeable. She said that both Requip and Mirapex were very good
dopamine agonist, but we decided to switch to Mirapex because of the
antidepressant attirbute in Mirapex. Dan was experiencing great anxiety
and depression. She told us that he was in the "honeymoon" stage of the
disease and that most anything at this point would help his symptoms. We
also told her of the Vitamin C, E, Co-Q10, and Melatonin that he was
taking. She said that if she had the disease, she would be doing the same
thing in case they really do help. She also said that they like to see
their patients every 4 months, but we can't afford to fly to CA 3 times a
year, so we are searching for another doctor here in Montana that we can
feel comfortable with. We have narrowed it down to two....probably the
only two in Montana with experience. Dan's symptoms have really improved
at this point and we are thankful for that. (He is taking 1.5mg Mirapex
3/day and 5mg Eldapryl in the morning and at noon.) He has 5 years until he
is of age to retire (now called the Natural Resource and Conservation
Service--USDA) and we are hopeful that he will be able to do that. We are
fortunate to have good insurance benefits through the government. We met
Nancy Burnham at a Regional meeting and that is how I found out about this
list. Like Nancy, I am the advocate as my husband doesn't want to delve
into things....he likes me to do the work for him....and I will rather than
rely on doctors to know it all....especially when you are in a state like
Montana that is the 4th largest state and yet has only about 800,000 people
in the whole state! I have been ease-dropping for a few weeks now and look
forward to learning from all of you. I promise not to be so long-winded in
the future!!
I would ask one favor....I saw reference to a list of medications that need
to be watched out for when taking Eldelpryl...I know about
demerol.....where would I find this list? I am also looking into the medic
alert necklace (know he wouldn't wear a bracelet) because of the Eldepryl,
too. He carries the card, but in the case of an emergency, I worry that
they wouldn't take time to go through his wallet carefully and find it.
Thank you in advance.
Juelie McLean
Olde World Santa Dolls by the Santalady
http://www.santalady.com/
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