Weekly Check-In October 22-28, 2006

[steve m]

Hi Everyone..October is almost over..Where did it go?

Its been a challenging week..I took my brother in for a check up and they did some blood work, and The Dr called back the next day..He said that his PSA..(prostate) was 9..They get concerened when its higher than 4..The Doc said that his prostate is either enlarged..infected..or cancerous..So hes going in to see a Urologist on the 20th of next month..I hope hes ok.. ..Ive been thinking about this for days now..For those of you who dont know, my brother lives with me and is high functioning retarded..Like sure is full of curve balls..

Ive been out fishing this week, and I double up on my Sinamet on my morning dose, and it gets me through the 3 hours that Im out there..Also, per this experiment I found out that Im undermedicated..but for now Im only gonna take more Sinamet when I have to..either when I am engaging in physical activities, or if I am having a bad day

My YOPD support group was this morning, and the speaker was a RN who gave a lecture on APOKYN..Interesting stuff..She showed a before and after video clip and it was quite impressive!..I heard its quite expensive too..What else is new?..

Thats my week..How was yours?..I hope it was good

Steve

[Jaye]

Steve, you looked like you could use some company in this thread. I re-registered in Braintalk in order to thank the folks who've given me their support during my recent surgical adventure. Now my hip is replaced, the years of wondering what was wrong are over, and my surgeon got me on the table in time to give me a new joint and make the worn-down leg as long as it used to be. I came frighteningly close to being delayed for too long, as there was scarcely enough pelvic bone remaining on that side to permit attachment of the prosthesis. Why am I going into this here, I wonder. Well, I'm glad I followed my own long-standing advice on doctors and changed to a new orthopedic surgeon almost as soon as things seemed a bit too unfocused, impersonal, and even insulting. So life is better now, even with considerable healing ahead of me. Look for those silver linings, those positive effects, those strengthening realities. Live through the losses, but don't add 'em up. I hope your brother is doing well soon.

Jaye

[steve m]

Jaye..Its good to hear that you are doing much better..I figured the new hip would bring new hope with it as well..Searching for good Drs seems to e an ongoing thing..I have to search for a new GP..T he one I had was great, but decided to leave his private practice and go back to working at the hospital

I hope my brother doesnt have cancer, but the high PSA number has me worried..Strange..I drank, drugged, and smoked cigarettes for years..and my brother ends up with a problem, and the worse thing he ever did was drink coffee..Sometimes I think it doesnt matter all that much what you do..You either get sick or you dont..Some people take care of themselves and get sick while others abuse themselves and stay healthy...:confused:

[mamafigure]

Steve, I am sorry to hear about the scare that you and your family are going through. I sure hope that your brother's problem is transitory and not serious.

Jaye, so glad to see that you are posting. What a positive attitude you have. I admire you for that. My mom had knee replacement about the same time as your surgery. She is doing well.

I am still a nervous wreck. Just as I was starting to believe that things were working out to my liking I got a call yesterday and have to have the colonoscopy on Thursday. I got it approved that it would be done without meds, but they still want a hep lock and to have me hooked up to all kind of monitors. I know that this is silly for all of you, but it is an all encompassing fear for me...and then there is still the threat of impending surgery.

mama

[Bella]

Hey Steve & to all the troops out there LWP.
Sublime to the ridiculous! No Forum for months, a new one started then, a new splinter group with no holds barred. Sheesh I am confused!
So is this it? Parkies around the world in a "them and us"? What a pity that would be!
I have been sitting quietly watching to see what evolves. Will one be the place for the "swearing threads" the other for the recently barred and the could'nt, should'nt, if only it was like the good old days mentality. I dont know what or why I want or need. but I like reading and am waiting to see where some,all or many of you all end feeling "at home" or more comfortable, or best supported. No one wants conflict, but sometimes a little "lively disussion" was entertaining, until it became personal, and it always did you know! The other Forum will find that out soon enough.
Let me know please! I feel I have something to contribute occassionally.The 'them and us' of two nigh on identical Forums seems to me to such a pity!
John Lester has been providing to us for so many years it seems a pity to throw that away. I first joined in 1998 I think. I used to use the wonderful old "classical chat rooms" too, a place where I met so many still wonderful and close friends (Many of whom I have also met personally in the USA & Canada). Many of us have also sent donations over the years to John to try and keep us all together with a libraries of invaluable, funny, supportive and ready answers to the perennial parkies questions.
By the way, I am still very much a PLWP. Just because my gorgeous Fabs has died does'nt mean I am not still "out there",24 years of PD in my life, is almost half a lifetime for me. In Australia I am still asked to address Conferences on the role of the Care Partner, I still speak with Fabs' MDS/Neurologist, as a sounding board I suspect, and am keeping up with and contributing to Research and Development of finding a Cure for this insidious disease.
Cheers to all
Virginia Fay aka Bella
Email: aussiebella@yahoo.com.au

[made it up]

Hi Steve,
It's me aka Lee or madeoverseas. Glad to see you keep the weekly check in/welcome going.
Bella, Virginia, so good to hear from you and know a little of what you're up to these days! For those of you that don't live down under I can give you a quick geography lesson. Bella's a Queenslander but we won't hold that against her! If I remember correctly she used to be "one of us" a New South Welshwoman... right?
Cheers,
Lee

[jeri]

Thanks, Steve, for keeping this thread going. I usually don't post much but do want others to know that there are still some of us here.

Last week began to feel as if autumn was arriving and this week it looks as if we will be having a few days of Indian summer. I love this time of year. Who says that California doesn't have seasons? They just aren't as dramatic as those on the right coast.

It's now two months since my knee replacement and although the knee is still healing, my gait has visibly improved. Other than that, not a thing is new. That seems like a good thing. :cool:

jeri

[Mouse]

I went to an awesome large crafts fair this weekend. cleverly, we brought my father's scooter so I could keep up with everyone, enjoy myself and not wear out. It even has a brand new battery! It did move a little slower, I thought, than when my dad was alive and running all over town on it. Then it slowed further. The scooter made it clear from the car to the front gate of the craft fair, then died. Deader 'n a doornail. Apparently a brand new battery needs a long, long time on the charger initially. It was very sad. Still, I managed to keep up with my friends, or maybe they kept "down" with me, but we had a ball.

Mouse

[Chicory]

Steve- I agree that sometimes it doesn't matter what you do. You either get sick or you don't. My aunt was into health food and she still got pancreatic cancer and died. Her husband who always smoked and drank too much is still around. My father keeps asking me why do I think I got Parkinson's. Who knows?

I am having surgery on Thursday. I have a stone in my bladder and the urologist will break it up with a laser. It is minor surgery, but I am still nervous. I usually react badly to the anesthesia. Hopefully it won't be bad this time.

Chicory

[Eve]

Hello to everyone. I had my surgery on Tuesday, it was to repair a prolapsed bladder. I was so nervous and worried about it but it went quite well. I was only in the hospital for 24 hours. I had a general anesthetic and when I came out of it had some pain. I believe it was morphine I was given at that time and after that I never had anything else. I am surprised I went through it so well and hopefully will heal quickly. Apart from feeling very tired I'm doing O.K. My sister was with me to take care of my P.D. meds. I'm glad it is over and I hope I don't need any more surgery. Sometimes we worry too much and make it worse, or maybe I'm just lucky for a change.

[Chicory]

My surgery went well too. I didn't have to stay overnight. I didn't get nauseous from the anesthesia either so I am real glad about that.

Chicory

[Capri]

Steve-

You might want to inquire about Azilect (also known as rasagaline) I started it a month ago and find that my "on" times last much longer. You only need to take it once/day. (I also take sinemet) Zalapar is another drug to ask your neuro about. Again, you only take it once/day, but I believe this comes in a dissolvable wafer form and goes straight to the blood/brain barrier, as opposed to affecting your gut in an adverse way. Taken with sinemet, your "on" times should last much longer. Do keep us posted about your brother--the waiting can't be anything but stressful for you.

And Bella! So glad to see you. To anyone who doesn't know Bella--she is a VETERAN of plwp!!

Jaye--glad to hear your ordeal is over...I have had 3 replacements in my left hip. I did find that for a while, I needed to increase my sinemet level while I was recuperating. It seemed the pain meds took away from the effectiveness of the sinemet--although after 6 weeks, I was able to come back down to a lower dose of sinemet.

It's in the 80's here in AZ...and just beautiful! We consider anything under 100 a cold front. Brrrrr! ;)

Diann

[steve m]

Thanks for the info Dianne, but I hear that Azilect is very expensive, and I dont have a drug plan at the moment