Hello Folks;
I’m on the board most days and thought it time to introduce myself. I’m having a better day after several weeks of drug adjustment hell. My neuro put me on Comtan 200 mgs TID to extend the usefulness of Carbadopa & L-Dopa 100/25 of which I was taking 6-7 tabs a day along with Zantac 150mg BID, Requip .50mg TID, Alertec 100mg morning and lunch and Trazodone 50mg at bedtime. With the introduction of Comtan I reduced the Carbadopa & L-Dopa by 1/3 which was recommended. After a couple of weeks the shaking didn’t stop so I reinstated the missing Carbadopa & L-Dopa 100/25s. After the 3rd Comtan was added I broke out into a rash on my face and neck and minor hives on my extremities. Comtan has been discontinued. I haven’t driven the car for more than 3 days in the last month as I didn’t trust my abilities.

People often ask me when did I first know that I had PD. There were signs long before I was diagnosed in 2001. From 93-97, I’d gone back to university and lived with my Grandmother and she noticed the tremor in my left hand when I would fall asleep on the couch. I dismissed the tremor as just too many one-nighters and general college fatigue. One hot day in the summer of 2000, when carrying a glass of coke out to the porch, my hand spontaneously opened and the glass smashed at my feet. That same week I was on the roof helping a neigbour snap chalk lines for laying shingles and he was concerned that my balance wasn’t what it should be. I was afraid I had MS and my doc was sure it must be essential tremor b/c at 38 she thought I was too young for PD. – with my insistence she sent me to a neurologist. He didn’t even have to wait for the MRI and was more upset than I was when he told me it was Parkinson’s disease. I was relieved, in a sense, because I knew what I had and I had my sanity.

Up until now the medications have served my well, barring the usual side-effects. I had no drug coverage for the $3600.00 plus/yr expenses, but was gainfully employed working contract after contract for the local provincial government. It’s only during the last year that rolling tremor started bouncing my hands off the keyboard in “off times” that know no schedule. I’ve reluctantly made the decision last week not to go back to work at this time and I have many mixed feelings on that front. The job offers still come in, but everything in my line (mostly writing) requires typing on demand – I can’t say hold on, my drugs will kick in, in a little while, to the person who needs what they need yesterday. The last drug I tried for tremor was Cogentin and you would have thought I put on somebody else’s glasses by mistake – my vision was so fuzzed out that I couldn’t read a thing. I’ve come to the point where a lot of drugs just don’t agree with me or they don’t make much appreciable difference. I met with the neuro-surgeon and his assistant last month and since tremors, dyskenesia and dystonia are my main symptoms they felt DBS to be a good option. The only problem remaining is the wait-list; they can’t do it until September 2008. The end of October I go for my preliminary DBS assessments and that is pretty much where I am at for the moment. I’m hopeful that DBS will help me regain the fluidity of typing and that I will be back to work soon after the surgery and subsequent tweaking.
Best regards, Guy

Welcome Guy..I was dx in May of 04, symptomatic about 2 yrs prior

Yes...it's time that you did introduce yourself to us.
I want to say that working with the various PD medications is a "guessing game" and a "balancing act" that require so much time and patience. Presently, my pwp and her neurologist are working at "tweaking" her "meds"...and, believe me...this would try the patience of a saint!!! I guess the reason that I'm telling you this is that it seems that you're considering DBS...and I just wondered if you've given enough PD "meds" enough time before you make this decision. I guess if we could be assured of a positive response to the surgery, there would be no question in our minds about going in this direction because we would no longer have to proceed with the "trial and error" of all the medications available...and there are many. Whatever your decision about the surgery, I hope it will be the best it can be for you. Again...welcome to this place where I'm sure that you already know is the right place to be..for information...support...and just plain caring.

Therese

I know I have not said this before to anyone who has come here but the urge to say it has come on me and to you Theresa I say I am very happy you have joined us here as your posts are always informative and invariably seem to reach the point where information and compassion meet.

Pleased to be reading you.

Thelma...I think you mean me...Therese...although, I believe I've seen someone who posts very rarely named Theresa...but, I will assume that you were referring to me when you wrote that very nice message because it appeared in this thread and directly under my post. I have to tell you, Thelma, that your words meant a lot to me because I sometimes feel that I am an "intruder", here, not having PD myself...although, I've never been made to feel that way by anyone, here. Your very kind words seem to have allayed my thoughts of being an intruder, and I am so grateful to you for your kind words...thank you...

Therese

Therese,
Don't ever feel like you are an intruder here. You are a carepartner of a PWP and have a different view of PD. I think sometimes it's difficult for thoes of us with the disease to see things clearly. It's folks like you that help keep us on track.

Hello Guy,
Welcome to the forum.

GregD

Ditto Greg....Therese, you have never intruded...your words and advice are always valued and welcome, indeed.

Guy. Yes, it is about time you introduced yourself. Would you share your age...you sound relatively young for a PWP. Do let us know how your DBS evaluation goes.

I was dxd Oct 1994, symptoms back to 1988 at age 40.

It’s amazing what can transpire here in a matter of a few hours here. Thank you everyone for your warm welcome. And Therese, never underestimate importance and perspective of a caregiver. 25 years ago I looked after my mother for her 3 years during her fight with ovarian cancer and a year ago February I buried my father after his many years battling severe congestive heart failure. Not too many people realize how tired you get and few take the time to see that you are looking after yourself or that you get a break. Also, you raised a very valid point re: my heading for DBS early and not having tried the full gamut of drugs. A few years ago I was writing speeches, editing press releases and coordinating meetings and information for Ministers and Deputy Ministers of Social Services. Governments change and I found myself writing and doing research for the Ministry of Health and once again I could see more responsible positions were in view. But my tremors are to such a degree that my Director accommodated my working from home. Up to a few months ago, I used to write up reports by hand and type them typically between 1-3 am when I had no tremors. Even as I type this the spacebar has a mind of its own and I proofread in Word before it hits your screen so thattttt I don’t miss my wayward letteeeeeeers. To answer Carolyn’s question, I’m 44. My mother used to say: “it’s not the age; it’s the quantity of abuse.” These years should be the pique of my working life and if DBS will help me get a few more productive years in, I’m willing to take the chance. I’m disjointed tonight and babbling. Thanks for the welcome aboard and feel free to ask any question whenever I surface. Guy

thank you for your kind words. I want you to know that you've all "made my day" which hadn't been going too well so that you gave me a much-needed lift.

...and what you said, Greg, about the possibility of my giving all of you a different perspective...that of a carepartner...I guess this could be very beneficial to pwp's. It's "funny" how things work out. I initially came here so that I might be better able to view things from the pwp's perspective...never realizing that this could work both ways. As a matter of fact...as you all must know from my recent posts...I am in a situation with my pwp (Doreen) right now where, for the first time since her dx.10 years ago, I have had to do some "real carepartnering" because, as her neurologist once said to me, I am in the best position to know what's really going on with her and the situation at present is very new to me...to her...and very frightening...but, I have been searching, researching...and, most of all, asking your help, here, to provide me with information that I haven't been able to find to read in books...and I have gathered all your information to present to Doreen's neurologist on Friday...and you'll get a "kick" out of this, I'm sure. I have literally devised a "new medication regimen" that I feel could "work" for Doreen, and I intend to "burst forth" with this plan of mine at the visit on Friday. How arrogant is that? He has always said that he's open for suggestions...and that is exactly what I'm going to do...and I'm able to feel somewhat confident because I have gleaned so much from all of you. You see...I really DO believe that I just might have a good plan because I HAVE had the opportunity to watch just ONE person...Doreen...while the doctors just don't have that luxury...so, it's possible that I'll be able to present something that just might "click" and which her neurologist MIGHT accept as a valid regimen.

I have gone on and on, here, when my original intent was to thank those of you who have helped me so much and who have given me validation as a member of this forum...thank you....

Therese

As my symptoms have become worse and I think to the future, I have begun to worry about my wife and the burden I may become for her. I even suggested we divorce so that she may find someone healthy. To her credit, she didn't like the idea at all. My father was very ill in the last two decades of his life and I saw that caring for him was a tremendous burden for my mother. This makes me all the more concerned for my wife. Even though I really don't know what the future holds for me, I still worry about her. I worry that the situation may actually be worse for her than it is for me.

Essentially, I'm saying that the caring goes both ways, and that is good. Caring is probably the best medicine we have.

So I want to extend a very warm welcome and sincere appreciation to all those who care.

Karl