As I am sure most of us forum members have become aware of over our time here, we have you and Ally to thank for establishing the wonderfully respectful and thoughtful tone of this forum.
Thank you for caring and making all of us feel welcome.
Happy New Year to you and yours.
Hi Ronald. Interesting question.
I am 66 yrs old diagnosed 18 months ago. Probably really in my 3rd full year. Been on sinemet for 12 months.
The past six months I have been dealing with off times before and after all sinemet doses. This was and still is worst around my 3pm sinemet dose time.
To deal with this, my doctor has me using bot…[Read more]
Garrett, good topic.
I have spent the last 18 months trying to find the right dosage of the C/L to try to allow me to function well. But all that time there was and is a subtle subsurface current of this apathy thing going on too. We are, after all, in a situation where the only apparent help we are offered is some magic pi…[Read more]
My doctors prescribed a pill called Folbic, which is a B6 and B12 supplement pill. They did not order any blood tests for this. They told me that every PD patient will have B vitamin problems so every patient needs this supplement.
Indidently, I have had very low B and D blood levels for several years prior to my PD diagnosis la…[Read more]
Indeed I do. But only occasionally. I am just thankful for the pills. And there is some cost involved that I can afford. I cannot begin to imagine what it was like before the invention of the carbidopa/levodopa medicine. Or if one would have trouble affording any pill the Dr. recommends.
Hi Ally and you other PD folks. (This indeed meant to be humorous. But sadly, it is entirely true)
First snow of the season here near Chicago.
I thought I could sorta hide my PD.
Last year was no big deal.
But his year — BIG PROBLEM walking on slippery sidewalks and parking lot!
I am afraid I look like an old man wit…
Hi Jo S
I did not see your post before I posted my info and did not mean to seem to ignore it.
I sorta agree with you. A lot of this labeling doesn’t solve any problems.
But for me, it is important for planning purposes to have some feel for the prognosis. We each have to figure out who might care for us and who might care for those we are…[Read more]
I’ll start off.
H & Y Stage II and 1/2.
Good question and book recommendation
I was diagnosed a year ago and immediately started Sinemet last November. So coming up on one year.I started at 1 and 1/2 Sinemet 25/100 3 times a day. Over the past year I have raised and lowered and then significantly raised the sinemet dosage and timing to get to the level that seems works fo…[Read more]
I am in my first year and 11th month of taking meds. I will be having my 6th visit with my MDS neurologist in a few weeks. We adjusted meds by email twice too. Have not yet found the dosage and timing that works for me. I am now familiar with what off times means. Was it like this for others in their first year?
I am detail oriented, so bear with all the details. And I ask for forgiveness up front for my lame attempts at humor. If you can’t have a sense of humor with PD I don’t know how you can cope with this “very interesting disease, this PD”.
I would be interested if anyone else has had similar experiences in getting to either the r…[Read more]
I have lived here for 42 years. My father was career military so I lived in many places as a youth. I attended 7 different schools during 12 years of public schooling. Thanks for asking.
Prescribed by my PD Doctor:
1 Carbidopa/Levodopa, Started on 1 1/2 pills (450mg) spread throughout the day.
Now taking 1600mg spread through the day and night.
2 & 3. Two different pills for PD related bladder problems.
4 Flornef to deal with low blood pressure from all those levodopa and bladder pills.
5 Flobic, a B vitamins comp…[Read more]
North Suburb of Chicago, Illinois on Lake Michigan.
I have been on pills only since last November and I am now afraid not to so I haven’t missed a dose yet. I use an apple phone with an apple watch with alarms to remind me to take the pills for the three times a day I am away from home. I have a slim aluminum pill holder that I attach to my key ring. Holds the 6 round yellow pills with room fo…[Read more]
Thanks Jean. I cannot even begin to imagine what it was like before the miracle drug carbidopa/levodopa.
FYI for you wise old timers who probably have quick questions about my story. One of the my two second opinions did mention that three word phrase, which will not be spoken aloud, that begins with the letter M, as something to consider. But that did not seem obvious to the other two Drs and an MRI did not show that as obvious for…[Read more]
I appreciate you letting me join your forum. I was diagnosed with Parkinsonism a year ago May. That movement disorders doctor said I am certainly stiff and slow but it’s early so come back in a year or so. Second opinion three months later said something about about HY Stage 3! Third opinion said nontremor likely PD, HY Stage 2.5…[Read more]
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