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#1 someone

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Posted 21 August 2012 - 09:50 PM

Hi - I've done a lot of research so I don't have many typical 'newbie' questions. I think I'm pretty clear on what I'm facing. As clear as you can be knowing it's chronic, progressive, with an unknown rate of progress.

What I'm lacking is contact with other YOPD patients so I can learn from your experience.

What do you wish you'd done differently in your first year?

What advice would you give me?

Some context so it will help calibrate your replies: I'm a guy, 43, otherwise healthy, on ragasiline (Azilect) only 1mg/day... I think I'm very early in this... some slight left side stiffness (minor, almost not worth mentioning), and some noticeable slowness, particularly left hand, no resting tremors yet.

look forward to hearing from as many YOPD veterans as possible.

Thanks!

Someone

#2 joshzach4

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Posted 22 August 2012 - 06:22 AM

I was diagnosed at 36 and really there are definatly some things i would change. First i would have been more proactive about my meds. i was started on requipp xl 10 mg and it was awful. i had almost all of the side effects, and just thought thats thee way i was going to fill the rest of my life. Not the case switch to sinement aand feel good. Second i would ahve started exercising alot sooner. And third i would have more up front and honest about what was going on withmy doctor and family. I have learned the worst thing is to try to deal with this alone. good luck and keep fighting.

#3 Kristakj78

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Posted 22 August 2012 - 06:33 PM

I was recently diagnosed two months ago too. I am 34. For one, I would've gone to a neurologist sooner (I went to my primary for 2 yr and an orthopedic last year), and no one caught what was going on w me. I finally took it on my own to go to a neuro when I was having HORRIBLE trouble walkinng. I know you're probably looking for a more "'seasoned" PD, but that's my regret. I also have found help w local and online PD support groups. Figuring out meds can be difficult. Pramipexole (generic Mirapex) made me sick to my stomach, so I decreased my dosage (well, my Dr. did). Everyone's different though...good luck!

#4 Kristakj78

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Posted 22 August 2012 - 06:34 PM

PS- ask your doc about the Neupro patchl.......I've had decent results with it!

#5 sessie

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Posted 27 August 2012 - 02:03 PM

My partner was diagnosed last Nov at the age of 30. He's on Sinemet now, but we tried Selegiline and Mirapex before getting to the Sinemet...neither of them worked well for him. (And the Mirapex made him go batshit crazy--hallucinations and whatnot. We also just tried Neupro for a bit, but it made him crazy too. Apparently he and agonists don't mix well.) We knew that it was going to be a good 6-9 mos before we figured the meds out. He's doing really well now. I think just being gentle with yourself and realize that it's going to be...6-12 months before you adjust to the new reality. Be proactive with your doctors and if your meds aren't doing what you need them to do, change them. Ask lots of questions.

My partner needed to apply for FMLA and ADA-accommodations for his work. Maybe it would have been good to apply for those a bit earlier. Also, if you do need to make any major medicine changes, you might think about going on short term disability for a month or so, until your levels are where they need to be. (If you're thinking about Requip or Mirapex, I would definitely recommend taking time off work to really see if it's going to be helpful--and we found that even after only 4+ wks on Mirapex, when he had to come off it, the withdrawal was dreadful.) It would have been helpful for him to be on short term disability around the Mirapex debacle.

He is really stable right now and we're grateful for every day he feels good. Life goes on. We've somehow acclimated to the new reality. We're really happy. Our relationship is thriving because we have great communication and empathy for each other. We have been very open with his diagnosis with everyone--that's a personal choice, obviously.

#6 DANCER

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Posted 28 August 2012 - 04:00 PM

My advice would be to not compare yourself with other people with PD since everyone is so different.
Secondly, find a good neurologist who will listen to you. I found a great neurologist who is a good distance from me, however, he and his NP are always available by phone and now I only see him about every six months.
Good luck and God bless,
Dancer

#7 Ken_S

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Posted 29 August 2012 - 07:00 AM

In my 1st years:
I wish I would have had a better grasp of the vocabulary of PD. I endured two years of very bothersome neck and head dyskinesia because I didn’t really understand the difference between tremor, dyskinesia, & dystonia and what ones where caused by medications and what ones were PD. All the literature makes them sound so easy to identify but the reality is they can be much more subtle.

Only about two years ago had I started keeping detailed symptom logs that helped my MDS identify my diphasic dyskinesia (& adjust meds accordingly) but if I would have had a better grasp of those terms, I could have saved myself a lot of discomfort.

So my recommendations to myself would have been:
Know the symptoms and how to describe them.
Keep detailed records of symptoms and how they relate to medication.
Exercise, exercise, exercise, it really helps.

Improvise, Adapt and Overcome


#8 Kristakj78

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Posted 29 August 2012 - 11:47 AM

I have a question regarding the exercise. I know everyone's different, but I've seen a lot of posts, including yours that suggest excercise. I am having a hard time walking, etc., so much so that I have been falling and even broke my ankle a few months back. I wish I could exercise more. I am also home with my 3 boys, and used to NEED to walk them to the grocery store and post office at least once a day due to their adhd issues. I am beyond frustrated (as you can imagine due to the above). I absolutely love swimming, so this summer I tried to concentrate on that (til I ended up with inner ear and swimmer's ear). I guess I was swimming too much, even doing flips in the water, staying in for hours with the kids, etc., but my ears paid the consequence. I have gained 25 lb in the past 8 months between being less active and my broken ankle...it just stinksl. As I said, I wish I could exercise more, but anything but swimming seems to spike my blood pressure/stress/falls/back/neck pain and rigidity issues. ANY suggestions?

#9 Delta

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Posted 29 August 2012 - 05:23 PM

Everyones symptoms and abilities are different, so keep trying different things untiil you find something you like. A lot of the litrature suggests biking is great exercise for PWP. I like the stationary recombant bike. Other things to try would be yoga or tai chi. You could do either of these at home with a dvd and tv. I personally play tennis.. Like you I struggle to walk, but I can RUN just fine.

Keep trying different things. Exercise makes me feel so much better.

Delta

#10 Kristakj78

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Posted 29 August 2012 - 08:31 PM

That is so comforting (not to sound cliche)...I can run too just fine, but the walking is intense, literally, and I get tension headaches from rigidity in my back and neck. That is EXACTLY how to describe my running/walking experience! I have thought of buying some "at home" dvd's of yoga (they're cheap on Ebay, lol), and I think it may be the easiest with my kids being around. Thanks :)

#11 DANCER

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Posted 30 August 2012 - 06:22 AM

I love yoga, but can't take a regular class so I take a class with senior citizens. If you can afford it, take a private lesson just to see if it works for you.
Don't give up keep trying until you find an exercise that works for you. You could even do exercise in the water without dunking your head to avoid swimmer's ear.
good luck
dancer

#12 Natasha

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Posted 05 September 2012 - 06:24 AM

one more vote 4 yoga
it helps to stretch muscles, u can work on balance, it is slow
I am lucky - gym is 5 min away from my house and we have an excellent instructor, so I do it 4 times a week - and I wish it'd be 7 :)
it is really important to do the poses properly - good instructor is a must - at least at the beginning - u should "catch" the main principles
also I like these videos very much - u can try it: (same user has much more good yoga videos)
there are many kinds of yoga - we need the one that works on stretching

good luck :)

#13 someone

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Posted 07 September 2012 - 02:44 PM

Wow. Thanks for all the good advice. i didn't think anyone responded as I received no email notifications. I thought no one responded (and was kind of bummed), until i came back to the site today (then was ecstatic). i feel fortunate in that:
a) i think i caught this very early....
B) I found a great PD neuro in a major medical center with a specialized PD practice (in just 4 months of tests and referrals)
c) this doc is VERY responsive via email
d) I have an amazing wife and we were already deeply in love after 21 years (and even more so now)
e) I have not had any side effects to Azilect, but I think it is pretty mild compared to some of above (i know more aggressive drugs will some day be in my future, with new possible side effects).

I do already exercise, but am making a point to step it up. Thank you all for emphasizing the importance of doing so. It's motivating to me.

I'm not ready to disclose this yet. i do not feel I lack support given my relationship is so strong with my wife. And frankly, i don't see upside for anyone. Others will feel sorry for me, which I don't want. My kids/family will worry, which they don't need. And i will be bogged down with explaining the PD 'story' over and over, which i'm not interested in doing. My current thinking is that i'll 'sit on this' for now, until the PD progresses further (someday, no idea when), and when necessary, i'll disclose.

BTW, one of the most frustrating things about PD isn't 'having it'; it is not knowing how fast it will track and where it will go.

my outlook is pretty positive. my plan is to take Azilect until i feel it isn't cutting it, exercise more often and more vigorously (while I can, for as long as I can), and otherwise 'live my life normally.'

@Dancer - good point: everyone is different, and I will use caution before comparing myself to others; still, it is useful to learn from everyone (while maintaining some distance from self association)

@Ken_S - i've read the definitions of tremor, dyskinesia, & dystonia.... very clinical. how would you describe these in layman's terms?

Sorry, i tried to 'like' everyone's reply, but hit my daily quota of 5 apparently (@moderator: seriously?)

Thank you all!

Troy

#14 KimAgain

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Posted 08 September 2012 - 04:20 AM

Troy,
I've been pondering your question since I read it the day you posted--and asking myself what I'd have done differently, or wished I had known in the very beginning. Turns out, there are a few things...
  • My first neurologist was a great diagnostician, but outside of that, a dreadful doctor. He'd keep me waiting for as much as three or four hours a visit and then he'd come into the exam room and ask me how I was doing, while only half listening to the reply. I remember telling him I'd heard that it was best to stay off Sinemet as long as possible and he, without giving me any advice either way, said, "O.K., we'll get you started on Requip then." I spent the next nine months on Requip, at which time he switched me to Mirapex because the side effects of the Requip in MY body were debilitating. (Evidently, Agonists and I simply do not mix.) But, why did it take so long to make a change? Because every time I went to the doctor, he'd ask me if I wanted to keep trying and if I was seeing ANY improvement at all. Well, my tremor was more controlled, but the pay-off in terms of side-effects was NOT worth it, but I kept responding that, yes, I guess I was seeing a slight improvement. So, he kept me on the drug. Three times a day for eleven months I was felled as easy as a sapling by nausea, low blood pressure, sleep attacks (and that's not to mention the bladder control I eventually lost and the crushing blow to my "intimate life:" I could run the race, as it were, but crossing the finish line was impossible.) Still, my neuro kept just whipping out a Rx pad and sending me on my way. On my final visit, he kept me waiting four hours while he met with drug reps (I could hear him outside the door). He came in, sat down, asked me how "we" were doing and then, looked at his watch... that did it. I FINALLY said, "actually, I'm struggling with a barely controlled urge to wrestle my neurologist to the ground and beat the living shit out of him--how are you?" The insensitive moron actually thought I was kidding! He laughed! But, I marched out the door on a mission... I found a fabulous neurologist by word of mouth and by background checks and when I went to see her, she actually listened to me and gave me options and advice. She cited the latest findings and gave reasons why she thought I'd be better off on another drug. She still left the decision up to me, but now it was a fully informed decision. Conclusion: I should have been a lot kinder to myself a lot sooner and found my voice long, long before I did. Had I done so, I'd have gotten much better advice that fit MY personal case--and, I'd have backed it up with a second opinion. I eventually did this, but I am still incredulous that I took so long to take action on my own behalf when I would NEVER have left a family member of friend flopping like a fish out of water that long.
  • Now, every time I go to the doc, I go armed with a list of questions and observations--typed out--for the doctor to address. I have three neuro's now and I have to say they LOVE this approach. They usually ask to see the list and make notes on it for me. I always begin with a brief synopsis of how I am doing and because it is in writing, they seem to respond to it more directly and more quickly.
  • I am very, VERY glad I had a 15 year relationship with a fabulous internal med doc who consults regularly with my neuro's. One of the toughest things can be sorting through which symptoms are PD and which are something else. Each doc looks through a slightly different lens--and it helps to have the differing perspectives.
  • I was not nearly as afraid of people feeling sorry for me as I was of being "written off" as the sick woman. But, I decided to share early so that people would know I have to disease long before it made a big, big show of itself. I generally make light of it--"I have PD, but I'm in the very early stages, so it's not too bad at this time." Soon, people get used to it and actually forget that I have it at all. Everyone is different on that score--do what is most comfortable for you (men and women are especially different in our approaches I have noticed.) This, by the way, especially helped when I had DBS surgery, because everyone knew about my issue and were rooting for me all the way with the surgery.
  • I do get exercise, but I've learned it is equally important to know when you NEED a short rest. I have found that recharging my batteries before they are completely flat gives me greater energy in the long run.
  • My husband is my rock also. Ditto my best friend. But, let's face it--we lurk this forum because we seek validation and information from people who are experiencing the same disease we are. Use this as a resource--it's a good place to sort through your issues.
  • Finally, (because it's 5:05 a.m. and I am at last ready to try for a little more sleep) I have found that being informed is vitally important, but too much information can be frightening and crippling. What can happen and what will happen are two different things. I wait until a new symptom presents itself and THEN I research it (or, even have my husband or friend do it so I will not frighten myself with more information than I needed to know right then!). You don't get the disease all at once, why face every possible symptom all at once--especially since you may not get many of them at all?
Well, to sleep per chance to dream... well, I'll settle for a wee nap at this point! Good night Troy and good luck!
Kim

Dx 1994, age 45.  DBS surgery, 2009:  Bi-lateral; wires to one battery - on my left side.  300mg Sinemet CR daily.


#15 Natasha

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Posted 08 September 2012 - 11:27 AM

WindsongMoonChild, thanks for such a detailed and clear explanation - found a number of useful ideas :)
right now starting writing list for my neurologist :)

#16 noah

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Posted 08 September 2012 - 01:15 PM

as far as the exercise I use an ex bike b/c i have prob with one of my feet. There are studies that show an imporvement of symtoms when riding a bike at a high pace for 45 min or so. Check out the cleveland clinic theres where the studies were done, a Dr.jay albertson. I di it 5-6 times a week. Its easy put on some music or watch tv.

#17 DANCER

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Posted 08 September 2012 - 05:54 PM

Dancing is great. see if there is a Dance for Pd in your area. I am in one in PA and love it.

#18 Jenette

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Posted 09 September 2012 - 04:52 AM

Dancer - what part of PA? I'm in PA

#19 RNwithPD

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Posted 11 September 2012 - 12:05 AM

I am 40 years old and was sorta, kinda diagnosed about a year ago. Apparently, diagnosing PD is done with varying degrees of certainty with a final, conclusive diagnosis only occuring after several years of observation by the clinician. Anyways, my neuro says that he's "95% sure" that I have PD. MDS says I definitely have something, just not sure what to label it yet. SO....my first piece of advice is take the diagnosis stage with a grain of salt and lot of patience.

Secondly, if you start taking a dopamine agonist and start having any real issues, just do yourself a favor and get off of it IMMEDIATELY! I spent the better part of this year suffering from the Requip rather than the PD. With most doctors you have to be your own advocate and state clearly what you want.

Third, the first year after semi-diagnosis is a real learning curve - give yourself time to absorb the information in small chunks. And considering how different everyone's symptoms are (yet, so much the same), I think you'll come to realize as I have that the treatment of PD is more of an art than a science. It doesn't take too long to learn the various medication names and dosing ranges, but learning how much to give, how often, and in what combinations to suit each individual patient truly is an art. So, do yourself another favor and find yourself an MDS "artist."

Finally, as previously stated, take your time to learn and then reconsider disclosing your condition at least to family and friends so that you can help create awareness concerning the disease and its less known symptoms (i.e. everything other than "shaking"). I hate to say it, but we really are competing for a limited number of research dollars and getting the word out is the only way to get more.

With respect to the definitions, I would have to say that "dystonia" is the easiest for me to describe. It literally means "abnormal tone." Instead of a muscle or group of muscles being loose and limber, they are tight and stiff. It also refers to a cramping in the muscle that, to me, is very similar to a Charley horse but more constant and not as severe - yet still painful and very annoying.

"Tremor" and "dyskinesia" are often pretty difficult to discern even for the experts, so I doubt I could accurately describe them. Apparently, what I was calling a "tremor" is more like "myoclonus" (alien limb). Mine originates more from the shoulder than the hand, and causes my whole arm to jerk when I'm trying to use a computer mouse, a screwdriver, etc. I have micrographia (small, cramped handwriting), but not really the typical "pill-rolling" tremor typically associated with PD.

Hope this discertation helps! lol

Kevin

Currently age 42.  Symptomatic at age 36.  Diagnosed at age 39.  Sinemet 2-tabs every 4 hrs (800-1000mg levodopa daily); Amantadine 100 mg 3 times/day; Primidone 50 mg 3 times/day; gabapentin 200 mg 3 times/day; Klonopin 1 mg at bedtime; Seroquel 50 mg at bedtime; Effexor 75 mg daily; Vit-D3 5000 IU daily;Vit-B Complex daily; Melatonin 3 mg at bedtime


#20 Christina

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Posted 11 September 2012 - 04:51 PM

Troy,
I've been pondering your question since I read it the day you posted--and asking myself what I'd have done differently, or wished I had known in the very beginning. Turns out, there are a few things...

  • My first neurologist was a great diagnostician, but outside of that, a dreadful doctor. He'd keep me waiting for as much as three or four hours a visit and then he'd come into the exam room and ask me how I was doing, while only half listening to the reply. I remember telling him I'd heard that it was best to stay off Sinemet as long as possible and he, without giving me any advice either way, said, "O.K., we'll get you started on Requip then." I spent the next nine months on Requip, at which time he switched me to Mirapex because the side effects of the Requip in MY body were debilitating. (Evidently, Agonists and I simply do not mix.) But, why did it take so long to make a change? Because every time I went to the doctor, he'd ask me if I wanted to keep trying and if I was seeing ANY improvement at all. Well, my tremor was more controlled, but the pay-off in terms of side-effects was NOT worth it, but I kept responding that, yes, I guess I was seeing a slight improvement. So, he kept me on the drug. Three times a day for eleven months I was felled as easy as a sapling by nausea, low blood pressure, sleep attacks (and that's not to mention the bladder control I eventually lost and the crushing blow to my "intimate life:" I could run the race, as it were, but crossing the finish line was impossible.) Still, my neuro kept just whipping out a Rx pad and sending me on my way. On my final visit, he kept me waiting four hours while he met with drug reps (I could hear him outside the door). He came in, sat down, asked me how "we" were doing and then, looked at his watch... that did it. I FINALLY said, "actually, I'm struggling with a barely controlled urge to wrestle my neurologist to the ground and beat the living shit out of him--how are you?" The insensitive moron actually thought I was kidding! He laughed! But, I marched out the door on a mission... I found a fabulous neurologist by word of mouth and by background checks and when I went to see her, she actually listened to me and gave me options and advice. She cited the latest findings and gave reasons why she thought I'd be better off on another drug. She still left the decision up to me, but now it was a fully informed decision. Conclusion: I should have been a lot kinder to myself a lot sooner and found my voice long, long before I did. Had I done so, I'd have gotten much better advice that fit MY personal case--and, I'd have backed it up with a second opinion. I eventually did this, but I am still incredulous that I took so long to take action on my own behalf when I would NEVER have left a family member of friend flopping like a fish out of water that long.
  • Now, every time I go to the doc, I go armed with a list of questions and observations--typed out--for the doctor to address. I have three neuro's now and I have to say they LOVE this approach. They usually ask to see the list and make notes on it for me. I always begin with a brief synopsis of how I am doing and because it is in writing, they seem to respond to it more directly and more quickly.
  • I am very, VERY glad I had a 15 year relationship with a fabulous internal med doc who consults regularly with my neuro's. One of the toughest things can be sorting through which symptoms are PD and which are something else. Each doc looks through a slightly different lens--and it helps to have the differing perspectives.
  • I was not nearly as afraid of people feeling sorry for me as I was of being "written off" as the sick woman. But, I decided to share early so that people would know I have to disease long before it made a big, big show of itself. I generally make light of it--"I have PD, but I'm in the very early stages, so it's not too bad at this time." Soon, people get used to it and actually forget that I have it at all. Everyone is different on that score--do what is most comfortable for you (men and women are especially different in our approaches I have noticed.) This, by the way, especially helped when I had DBS surgery, because everyone knew about my issue and were rooting for me all the way with the surgery.
  • I do get exercise, but I've learned it is equally important to know when you NEED a short rest. I have found that recharging my batteries before they are completely flat gives me greater energy in the long run.
  • My husband is my rock also. Ditto my best friend. But, let's face it--we lurk this forum because we seek validation and information from people who are experiencing the same disease we are. Use this as a resource--it's a good place to sort through your issues.
  • Finally, (because it's 5:05 a.m. and I am at last ready to try for a little more sleep) I have found that being informed is vitally important, but too much information can be frightening and crippling. What can happen and what will happen are two different things. I wait until a new symptom presents itself and THEN I research it (or, even have my husband or friend do it so I will not frighten myself with more information than I needed to know right then!). You don't get the disease all at once, why face every possible symptom all at once--especially since you may not get many of them at all?
Well, to sleep per chance to dream... well, I'll settle for a wee nap at this point! Good night Troy and good luck!
Kim


Hi Kim:

I have emailed my neuro several times regarding my meds. The first time she replied back saying maybe reduce the
dosage by one tablet. I did and it helped with the side effect. I have a few other either side effects or symtoms but
I don't know which. I emailed her three times and she doesn't even ans. the email. I was diagnosed 6 weeks ago
and am waiting for approval form health care pro. to take the Da Tscan test. This Neuro is at university medical center,
supposedly a very good one. My primary doctor is great but he said he would take care of me and my meds. I just
don't believe he has the expertice in this area. I am going to keep on with what I am doing until I get the results of
the Da Tscan. I have a friend whose son is a doctor at the Mayo clinic in Minnesota. He know the best Neuro there
and will help me. I live in San Diego but will spend the time and money to go to Minn. if need be to feel like I am being
watched after. I excercise (treadmill and machines). Have difficulty walking but absolutely can't run. Sinement helps
with the walking. No Tremor and no pain. Use to fall all the time. Now it seems I am either more cautious or the treadmill
is helping because I am not falling. But I my framework is floppy, weak. Use to play tennis 4 or 5 times a week. Run like
the wind, at 63. In bed I lay there thinking that just a short while ago I was up at 7:00am and on the courts by 7:30am
with all my friends. Talk about working yourself into a strong case of self pity.

I also know what you mean about getting on the internet and researching. I have tried to figure things out for myself be-
cause of no communication with the neuro and have ran across things that cripple me. Just when I have convinced my-
self that I will be able to hang on until the "cure" I read something about my particular symptom and I have to start all
over again accepting and dealing with this.

I almost forgot to ask my questions. You said you have DBS operation. How did that work out for you? And do you
know anything about "pro savin" that I have read about?

I replied directly to your email but next time I will post to everyone.

Thanks for your post and thanks for you time.
Chris




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