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Posted 3/31/2007 10:40 AM (GMT 0)
posting live from the conference good morning strengthenme any any body else listening. Yekkimo - Knaresborough is a beautiful part of the coountry but if your son ever wanders south to Hertfordshire there will always be a warm welcome for him in the bear's den. To answer strengthenme's questions:I am 56 with a wife and 15 year old future rock star in his dreams!!! They hold no hostages to pd and there are no patients in the bear's den. Diagnosed last January [06] but self diagnosed the year before and most importantly believed by my MD [GP in UK]. Ialso have, like others using this site, other medical coditions - osteoarthritis -semi knee job, total hhip job and waiting for a second hip job. Hold down a demanding role with a volunteering programme covering the whole of England. I am hoping to retire in 2 years time and ave some quality time while I still can.
As I have said, I am not really a group support person but I have no doubt that there is a pplace for them for those who find them essentail to thier way of coping. I have admiration for those who for whatever reason, are coping with neuro coditions alone and see the value of sites such as this. I do need to talk about my condition but many of the people who are around me can't or won't listen - their perogative of course. But from the bear, thank you all for reading and giving me the opportunity to communicate with people who will listen - I hope. As I have said, it's one heck of a forum. back to the conference. The Bear.
Posted 3/31/2007 11:19 AM (GMT 0)
Bear,You sound like a person tnat keeps himself busy.Certainly a key in helping to keep this disease at bay.Looks like today it will be warming up into the sixties,with yard work and fishing around the corner.I retired last year to give myself time to fish more,and I haven't regretted it ;although I did take a cut in pay.My wife continues to work so we have had a role reversal,although she always was a terrible cook,and I love cooking I find many excuses to not clean the house.

   The last of the snow is beginning to melt here in the far north,and the birds are singing......What a great day.Got to go out and enjoy it stay well.Ed

Posted 3/31/2007 4:27 PM (GMT 0)
Just a word about support groups.  Like Bear, I was not the type to join a group, especially if it meant meeting people in advanced stages of PD. It was a sort of denial I suppose.

The first time I went along it was really out of curiosity and sure enough I got frightened when I saw some members with bad dyskinesias.  What it taught me, however, was that not everyone ends up like that and, in fact, the worst cases were a small minority, with the rest of the group at different stages and with variable symptons. I learned a lot from others and their carers and it was through seeing how differently they coped, and in some cases didn't cope that I sorted my own mind out.

I can't say that I am happy with having PD but I am happy to know that I have some control over it and do not leave all the decisions to the neuros and doctors. You can learn a lot from other pd'ers.

Being one of a group gives me confidence as well as making it possible to have a good time.  We go tenpin bowling a couple of time a month and regularly have lunch together (between 30 and 40 of us) in local pubs. It works for me and would advise anyone to give it a try

God Bless

Billy

Posted 3/31/2007 7:26 PM (GMT 0)
Dear Bear,

I am in London and a member of the PD Society. What are YAPPERS how old do you have to be?

I know what you mean about meeting others more progressed in the disease. That really frightens me too. I was diagnosed last year and am age 54. I still feel fear about the future

Girlirish
Posted 3/31/2007 9:45 PM (GMT 0)
Hi girlirish, Yappers are members of the young active parkinsons network and they can be found via the pds web site as the YPN - Young Parkinsons Network and there is a link from the site to the YPN website. if I can find it I will post its web site address for you tomorrow.

How's the grand-daughter strengthenme?

Billy I take your point and don't deny anybody what works for them as yu can see. I can only speak for myself and would never dream of preaching toanybody - a viewpont is merely that, man. Whatever works use it and if it ain't broke don't mend it.

Stay well everybody and remember to turn your light off - it keeps the bugs down!!!

The Bear

ps girlirish

www.yap-web.net

If that don't work let me know 

Posted 4/1/2007 1:36 PM (GMT 0)

minmark said...
This is my first time in this forum, I have PD for more than 16 years but still working full time. What keep me going? I remain active, physically and mentally. I learn to accept the disease and learn to live with it. I was only 37 when I got the disease and now I'm already 53, and still fighting.

When I was diagnosed with parkinson"s Disease, I was really depressed. I already felt the symptoms three years ago, the slowwness in movement, the rigidity, the tremors and my handwriting  was getting crooked and small. It took a while before I learned to accept the disease and lived with it. I just gave birth to my youngest daughter ar that time, that was 1990 and I was sick.She became my inspiration. I developed the positive attitude and begin to change my outlook in life. I want to see my baby grow and dream for her future. So I turned depression into inspiration. I started fighting the disease. I returned to work full time. There are times that I'm freezing but I do concentrate and vizualise that I'm walking.

Positive attitude, this is the key to every struggle. Don't live with your problems. Think of the ways how to handle this problem properly. Don't let PD control your life, you must be the one in control. When doing something, put in your mind that "you can". Don't live in misery, live a normal life, enjoy what you supposed to do, and I'm sure you'll make it.

Be grateful that you're still alive. If you open your eyes in your surroundings, there's a lot of blessings everywhere. And I'm grateful that I'm still capable of working, independent, and I have the right attitude.

 

Posted 4/1/2007 6:41 PM (GMT 0)
Minmark, what an inspiritation you are....and I totally agree with everything you said!!!! Staying positive is the most important thing to do, I have way to much life to live....

Bear....how's everything going? Our Grandson is doing great, and like I said I plan on being around a long time and watch him growup....Everything is just great here, It's a little over cast, however my husband and I plan on going out today and riding our ATV's, it's a blast, it keeps us both very active!!!

Everyone....off to enjoy the day, more tomorrow...
God Bless Everyone.....
Posted 4/1/2007 9:25 PM (GMT 0)
sorry sgme got the genders muffled!!!
Enjoy the day
The Bear
Posted 4/2/2007 2:59 PM (GMT 0)
Bear,

How the heck are you on this fine Monday morning!!!! Well, we had an awesome weekend, got to spend plenty of time with that new Grandson of mine and other family members, which made for a wonderful weekend. It's a beautifufl day today. Time to get out and enjoy as much as possible, will enjoy as much as I can as I'm back to work!!!! Take care everyone, drop in and let me know how everyone's weekend went!

Cheers.
Posted 4/3/2007 5:02 AM (GMT 0)
MANAGING YOUR MEDICATION

You must know how to manage your medication. In my experience, the more medication you take the more you feel the symptoms of PD. Sixteen years of Parkinsons give me the expertise in managing my medication Since I'm still working full time, I have to take my medicine early. I'm taking my first dose at 5:00 am. I take2 sinemet regular25/100, 1 amentadine 100 mg, and one mirapex 1 mg. Then at 8:am I will take half of Mirapex and 1 sinemet. The following dosages will be every 2 hours. I'm taking the medication every two hours to regulate the continuity of my movement. I also take my meds in regular basis.
It's a matter of conditiong of your body. I don't take any anti-depressant pill, although my neurologist keep on prescribing me because I believe that this medication will lead to confusion and will destroy my mind. Before I thought I won't reach ten years and I'm already disable or confined in a wheelchair. But through medication management I'm able to maintain my independence and still working. You can feel when your medication wear off and don't miss your dose.

For suplement I'm taking are fresh carrot juice, Lecithin and Manganese. These keep me going.
Posted 4/3/2007 7:12 AM (GMT 0)
Hi strength - sounds like our having great weather over there. I'm interested in mnmarks comment about his/her headman's wanting to prescribe anti deps. As I've said before if it ain't broke don't fix it. The medical profession are a race we owe our survival to but also history is littered with them going over the top. Here in the UK there is an ongoing nark about the over prescrption of anti deps and docs often prescribe mother's little helpers jsut to keep people out of the surgery - to the tune of annual prescriptions!!! In a past incarnation I was manager of a hospital discharge project for older people adn have had an interest n prescribing practice ever since. What I do find helpful here is how people manage their multi meds for pd. It will eventually happen to me and I am trying to draw strength form you people who have been doing it for years. It is good to see mnmark still workng after 15 years dx. Thank you all for sharing - it helps control the underlying fear most of us experience no amtter how up front we are in our coping mechanisms. Even bears get scared in our loniler moments. Stay well everybody am off on my travels again.
The Bear.
Posted 4/3/2007 4:13 PM (GMT 0)
HI Bear     tongue     How are you this fine Tuesday morning????   Everything is going really well here. I had a wonderful weekend, spending time with my family and enjoying that new Grandbaby of ours!!! Hope everyone one had an awesome weekend!!

 

Here's a list of the supplements I take 3 times a day!!!  They really help me a lot!!!  yeah
Vit C
Vit E
Vit - Mult
Flax seed oil
primrose oil
Vit B, 6, 1, 12
Glutathione

Potassium
CQ10
Creatine
Phosphatidylserine
Lyrosein in the moring before I eat
Mangesnes
calcuim


 

Post Edited (Strengthenme) : 4/3/2007 4:27:22 PM (GMT-6)

Posted 4/4/2007 4:35 AM (GMT 0)
At first I was scared that i have PD. I'm working in the elderly facility where there's a lot of Parkinsonian residents. I'm dealing with the residents with PD especially those in the end stage. They can't talk, they have swallowing problem, they are so stiff and totally out. I know how hard it is. I can feel their sufferings because I'm one of them. But this give me courage and determination to fight. It is set in my mind that I won't be in this stage. And everyday I'm winning.God is giving me the strength to cope in my job. And I'm sharing my blessings to them. I do sing for them, playing bingo, making flowers, dolls and more.

How do I do this? Everyday, before I go t o bed, I'm visualizing myself as a healthy individual. I'm walking, running in a beach, playing with my grandchildren and everything. The same in the morning. At 5 am, I'm visualizing myself again as a strong person.
Tell yourself you can and I'm sure you can.
Posted 4/6/2007 10:44 AM (GMT 0)
Hiya Strength, hope you have a great easter break and that all of your wishes come true. I've posted a note on Neupro patches further up the line for those who might find it interesting. I am still intrigued how people in the US acquire their variuos meications and pay for them. It must be a hell of a job staying solvent when you are ill and have something like pd and it ain't going to go away. It can be bad enough here being subsidised and paying a cntribution. Any thoughts?
Stay well and positive.
The Bear
Posted 4/6/2007 2:41 PM (GMT 0)
Hi Bear,

Great hearing from you   :-)    All is well on this end of things!!! I haven't ready your other post yet on Neupro patches, after I finish this post, I plan on reading it. Well, for Easter we will be going out to Church then off to Brunch. Our Grandson is doing well, it's so exciting being a Grandparent!!!  Of course I think about when our children where that age, they are all so precous. Hope all is well with you and your family. God Bless and look forward to hearing from you soon. Happy Easter Everyone yeah yeah
Posted 5/8/2007 2:50 AM (GMT 0)
Hi I'm about your age and was diagnosed when I was 49. It took me about 6months be for I could say the word parkinsons without crying
When I told my children, who were 25 an 30 years old they were mad I didn' t tell them right away. My husband has been very understanding
and helps alot. I think it has brought us closer. Keep fighting . Find the right movement disorder specialist. That makes a big difference.
Keep moving,
fiestytex
Posted 5/9/2007 10:04 AM (GMT 0)
Hiya Strength! How's things going, sorry it all went quiet for a while - been visiting the arthritis forum. How's the grandson coming along?
Let me know how life's been goin'.
Take care
The Bear
Posted 5/11/2007 2:13 AM (GMT 0)
I'm a new member, 58 years old, diagnosed 1 year ago, and probably posting too many comments, but I'm excited to meet so many people that have so much in common with me, especially recently diagnosed parkies.  I don't want to deflect this thread from the original comments, but in regards to the newly diagnosed I can't get anyone, repeat anyone, who will try to  give me some idea of what to expect in the next 2-4 years.  I am still working, but I read things that make me wonder if I will be walking 2 years from now.  If that's the case I'm retiring right away.  I'm trying to get over to Shands in Gainesville to ask a lot of questions and here's one for you guys-what questions should I be asking?  Thanks. 

Posted 5/11/2007 11:24 AM (GMT 0)
Gtm,I walked a mile yesterday,couln't do it without my meds,I shake,rattle but I can still roll on,and plan to do so for awhile.No one can tell you where you will be in 2 yrs as we all progress at a different rate.for that matter no one on this planet knows where they will be in 2 yrs.You can't post too much or ask too many questions as you have to live with PD.I would recommend seeing a movement disorder specialist if you are not already doing so.They are neurologists that would have the most knowledge on PD.I would also suggest starting another thread as it might bring renewed interest to your questions.best to you.Ed
Posted 5/11/2007 12:00 PM (GMT 0)
I appreciate the answer.  I don't know where you are located so you may not know that Shands is a hospital, actually a teaching hospital at the University of Florida.  I am being referred there by my local neurologist and the specialist that you mentioned will hopefully be part of the review there.  I should know more about that soon.  It isn't 7 am yet and I've been up about 5 and a half hours already.  Do you have that problem?  I made good use of the time by actually finding someone online that I lost in 1979.  Now I have to take the Riviera to the shop for some tuning up.  All in all it looks like a good day.  Later.
Posted 5/12/2007 3:18 AM (GMT 0)
Hi
I was diagnosed 5 years ago and I was scared. I still am but I keep fighting. Get the best movement disorder specialist you can. It makes a big
difference. I still hike, work and even ride my horse. There are days when things are rough but I keep moving. I too wakeup at about 5:00 in the morning.
Some times I will take an over the counter sleep aid and then I get about 5 hours of good sleep. Check with your doctor which one he/she recommends.
I also listen to music to help me sleep. I even have a CD of birds and waterfalls as if I am in the forest. It's very calming.
Keep moving
fiestytex
Posted 5/12/2007 4:09 AM (GMT 0)
Good suggestion on the cd's.  I have them but have not been using them.  I will try it tonight although being up most of last night should do the trick.  I never have checked into exactly what a movement disorder specialist is.  Could you explain?  Thanks.
Posted 5/22/2007 3:51 AM (GMT 0)
All right!  I talked to Shands today.  I have an appointment for 6/22.  Gonna be a busy month.  Colonoscopy, oral biopsy, prostate biopsy, eye doctor.  No wonder I forgot to go the allergist today.  Note- the neurologist's office told me today to stop taking all my meds two days before going to Shands.  Then I reminded them what happened last time they told me to just stop taking the requip.  I'm not ready for another ambulance ride.  Be aware or beware.
Posted 5/28/2007 12:32 PM (GMT 0)
Just dropping in to see what condition my condition is in.  The sun is shining on day four of a four day weekend and all I can think of is how I don't want to go back to the office tomorrow.  What a whiner!  Had company from out of town Sat and Sun, watched an old movie and could barely stay awake, went for a walk and weather was beautiful, but once around the block and I was tired.  Current cancer scare keeps me from concentrating, but if everything turns out ok I guess that I'll feel better about "just " having parkinsons.  Keep posting please.  Dropped out of another forum.  Really different group over there.  Eight hours sleep last night.  Can't remember the last time that happened.  Whoops, hand is shaking.  Better take the meds.  Have a good one.
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