Don't know what the topic is
 

I'm having a very difficult time even knowing what to ask.I don't really think of myself as a whiner or complainer but I'm just so TIRED of all this stuff. Having been officially diagnosed in 2004, my physical condition is deteriorating. No matter WHAT I do, I just get worse and worse. Now, I "understand"that I would, but to emotionally wrap myself around all this crap, is entirely something else. I have two voices constantly competing. The one says FIGHT this with everything you've got, Never give up, and the other, well, it says, "why bother, it doesn't help anyway. The medical community has been less than helpful. The 3 different neurologists I've seen have said things which contradict the other one. So WHO do I believe? What do I do? I've been lectured to, admonished for not taking the drugs EXACTLY how prescribed, told I was fortunate to be allowed to be one DR's patient, Told my bad experience with a drug should not be happening.... I could go on and on. The latest fiasco is thinking I finally found A doctor who could handle it if I wanted to go to Shands or the Mayo clinic which he said was No problem on the first visit, and then hearing him tell me on the next visit that really I should go see another Neurologist in NYC that he knows of who is BETTER. Of course, he KNOWS this one, and maybe he is GREAT, but now what do I do. I'll probably get a 2nd opinion which matches his. HOw does THAT help me??? Oh, I am just plain MAD!!!! Thanks for letting me vent! FG

Take the reins
 

Hi, FG,

First, I apologize that no one has answered your message since you posted it roughly 52 hours ago.

Yes, we have a degenerative disease. That means it keeps getting worse. You may recall this thread, about "How we take care of ourselves can make a difference!" I recommend it.

There's a book for new patients, written by Jackie Christensen, that would help anyone get familiar with the options for treatment.

You can spend some time reading www.parkinson.org or www.michaeljfox.org or the sites of any of the large PD charities. www.wemove.orge has some good stuff on doctor-patient relations.

I emphatically recommend reading as much of this forum as you have time for, but don't do it all day. If you find a writer who seems to speak to your condition, you can search for their posts and see what they have to say over time.

Most important, I strongly recommend that you take charge of your care YOURSELF. Your job is to accurately inform the doctors of the most telling symptoms and events, and to make choices when a change of treatment is needed. No one else can do this for you, except perhaps a close caregiver.

Lastly, if it helps, know that a lot of us have been where you've been. I quote myself from a 2003 message posted on Braintalk:

Floridagal
 

At times the jouney is difficult but there are things that I find help me keep going. Whenever I find myself slipping into that place where it feels hopeless I get busy doing things like spending time with my grandchildren or taking on a new project. It seems when we have time to think about how we feel it feels a lot worse. Stay focused and find a specialist who can get you on a good cocktail of meds, it takes time to fine tune it and then sometimes you have to fine tune it some more. I know that whenever I get to the point where I need more meds I find it very depressing and hopeless. Then after a while I come around and things level off for a while. Its a roller coaster ride so hang on to your hat and meet the challenge. Try experimenting a little with your meds, you are the only one who really knows how you feel. If you need an antidepressant then try one, if it doesn't work try another one. I have learned to be more assertive and it really does work. You have hit a bad patch, we all do at times, but there are lots of things you can try so get the help you need, its out there you just have to go for it.

dear fg,

you were duagnoised in 2004. everone is dufferevt, but ypu shouldn't be so bad yet. have you seen a mds who specalises ib pd? i was dx;d in 1995 and hust started to be incapacipated this yearr. If it us pd, get axtve and sray that way. it will jeeo the progression slow You are still in that period where you are dealing with the dx and working iout meds.

good responses
 

I read your thread also, and felt really bad for you. However, just couldn't think how to respond. Jaye and Evon, your answers were very good. I have felt the same way as you Jaye many times. I had depression long before discovering I had parkinsons. It is hard having something like pd and it seems in most cases to strike when you are 50 or older. I seem to be not only upset about pd but the fact that I am getting older. This is especially evident at work where the young thrive and wow everyone with their new ideas and quick capabilities with technology. The clumsiness, pain, slumped shoulders, etc of parkinsons seem to magnify those negative feelings at times. It is hard to keep positive thoughts.
One thing that has helped me tremendously is finding a hobby I enjoy and that I can still do with my physical deficiencies. I work with jewelry and now can make my own beads by melting glass. I look forward to going to the studio all the time. It is my one escape where I can relax and forgot my condition and all obligations, etc. If I didn't have this hobby, I know I would be dwelling alot more on my condition, cleaning house, worrying about work, money,trying to diet, and other similar things. I hope you can find a hobby or interest that really grabs you-something that you can look forward to every day. It helps more than you can imagine.
:hug:

Getting outside of the self
 

Libra, I am so glad for you! I recently discovered jewelry, too! I don't melt glass, but I do wirework and stringing, and have the supplies ready for beadwork. For a several years I crocheted like a fiend, and still do crochet, although that's getting affected by "offs" a lot.

Another positive thing that helps a lot is doing things for others, for example I started a prayer shawl ministry for my faith community. Recently I have started giving workshops on how to make prayer beads (rosaries).''

I'm active and happy. I get mournful very seldom, and when and where I express it is under my control.

One of my mottos is "LIVE until you die."

Jaye

Hi Floridagal-
I tried to reach you personally as soon as you posted, but not sure you got it. Maybe what I said is not something that will help you right now, and if that is so, please, no worries, I understand. But I know a few of the doctors in New York and I dont know who your doctor had in mind as a referral, but maybe I would know who that person was and might be able to offer some perspective about him/her....If that interests you please feel free to PM or email me....Just wanted to be sure you got my communication.....
best to you, dear.
Fiona

Oh Thankyou, Thankyou!
 

:grouphug:I must admit that I did check back to see if ANYONE could relate to me when I wrote that message the other day, and when nobody had... Well, I figured it might have been too depressing. But You JAYE, how brave, and you other kind folks out there, thanks for reading the post and the responses some were able to give,THANKYOU, it helped alot. Sometimes I get so lonely in this disease for somebody who REALLY knows what it's like to live this way.YOU KNOW!:grouphug: Fiona, no I didn't get your message, don't know why not, I don't have any Private messages pending. THanks for trying though and i am interested in your input. If anyone has had any experience at shands or Mayo in FL that would be great. It makes all the difference to know you're out there! Bless you, FG

FG, here's what comes up when I click on your name and choose "Send a private message to Floridagal":
"Floridagal has chosen not to receive private messages or may not be allowed to receive private messages. Therefore you may not send your message to him/her."
I am in Florida right now. Where are you? Please PM me.

Jaye

jaye....try hitting refresh...i just sent her a test pm...and it went through.

i haven't checked your profile..but are your settings set send and recieve pm's?