The same dynamics are at work here as in any support group. We are at different levels of the illness, and this forum has evolved with some of us for almost ten years. We didn't have patient advocates with advanced pd when we were younger in the illness.

One doesn't understand advanced PD until you get there. I have a grandson at home whom I am helping to raise. Just as with any job, I have to conserve my energy for when my daughter is at work and I am responsible for him. As he goes to school, this brings not less, but more responsibility when she is at work.

However, our own community does not understand things like this. They don't understand advanced PD. No one can really imagine the physical suffering until it is upon them.

And so we deal with it in our own ways. Eventually, you get to the point where you know who and what is real, and who and what isn't. You know what is good for you to survive and what isn't.

My summation is simple. Eliminate what isn't.

Bemm, Idigogo, very good comments. Charlie, a DBS was good for you and I believe you and most of all I am glad for you.

I will always believe that GDNF was my shot for a future, based on how long I've had it. Maybe I'll get DBS and maybe I won't. But negativity must be eliminated. It's hard, but you do it to survive. You do it to stay "on". Having PD is like wearing your emotions on the outside.

Organizations are getting better at understanding this, but need funding from drug companies. They will only go so far. They should be building us nursing homes instead of hoarding their money. They should have fought harder for GDNF.

But I think great strides have been made. And that only comes from being informed.

So, in other words, you cope with it in ways that are good for you. Eliminate what isn't.

paula

I was very happy that 'Ol CS posted this, He is so right. We only look at this forum about once a week because y'all seem to be doing so well and we found it depressing to us.

And sorry Charlie - but DBS is NOT always such a great deal. Sure it has taken some symtoms away (for which we are grateful) but it has NOT given Kevin any more mobility and it has not increased his stamina or ability to function.

For us it's great to know there are many out there with the disease that you can share info and commiserate with but at the same time, it is good to pull inward a bit and not always compare how you are in relation to others.

That's why we call this the snowflake disease - no two are alike.

We are happy for those of you who travel and who go shopping and to sporting events. We love the fact that some of you sit at the computer and spend hours searching the internet for information. We think it's great that some off you organize events and participate in fundraisers.

We can not. We are happy to get through each day as best we can. We are glad to share a laugh or two. We are thrilled if we can get in a game of dominos. We can't always get there fast enough to answer your phone call and we can't meet you for dinner anyway because you want to go at 5:00PM and we can't function that late in the day.

Thanks "ol CS - We have only been dealing with this for 7 years and we are not even 60 yet.

There is much unsaid by many who read this forum. But hooray for those of you who are doing so well. We are happy for you!

K & G

DBS is the ONLY thing that can give one some quality of life NOW. If you go with a good, proven team, the chances of a bad outcome are in the single digits. There are surgeons out there who routinely get excellent results!!'

I have NO tremor, NO dystonia pain, I do have gait and balance problems, something the STN target area doesn't address, and I have speech problems. I probably will, at some point get another DBS to address the gait and balance problems.

My thought is why suffer when their is an answer out there for you.

Chuck, my friend, it breaks my heart to hear of your difficulties. I'd hope you'd consider it for your wife and kids if not yourself. it would be great if you did it for yourself though!!

Paula, you must know that GDNF most-likely will not be available in our life time. We can only get scant solice from the fact that undoubtedly, those Amgen execs will burn in Hell for their actions!! (maybe they'll have PD for all enternity!!)

You are a dear friend and I think the world of you!! (and your partner in crime, Jaye!!)

Their comes a time when getting the stress out of our lives means we are no longer living. We are just existing.
Life CAN be good for someone with advanced PD. get back in the rat race, if only as a spectator.

Charlie

programming is certainly issue with DBS as is medicinal adjuncts. I would urge you to pursue these avenues, if you have not already. I'll be the first to admit that there are entirely too many unhappy DBS'ers out there. (1 is too many) It is also true that most DBS failures are from programming issues, poor lead placement and to a somewhat lesser extent hardware issues. This is why I always say get to the BEST team you can, even if it means flying to them.

As far as stamina goes, that is a product of a sedentary life-style. Get him a stationary bike and tell him if he doesn't ride it, I'll show up and kick his ***!!!....LOLl

seriously, we have a strange kind of depression, it is apathy. WE are not sad, just don't feel like getting off our asses and doiing anything. I have to be on the lookout for this behavior in my life and get thru it. Exercise is the key.

Which exercise?? The one you do!!

Gayle;
we have some very sick people here. We minimise our problems in order to give others hope. read between the lines........

Charlie

Charlie - We do have a stationary bike (recumbant at that) and weights. He attends Physical therapy twice an week - Remember he was a runner and general exercise fanatic for years - hence the late diagnosis. I just think we were diagnosed way beyond where most folks get diagnosed because he was so physically fit. We go for tune up regualary but we still have realy bad days and we do get discouraged.
G

makes me think his effacious program is not on board yet. I know I recently went up a tenth of a volt after 4 years and the same setting.
Does he still have his original stimlators??
DBS does NOT take us back to our pre-Parkinsons days. IT substitutes a less troublesome set of symptoms for the bad ones. Have you tried turning him off for 4 hours with no meds and then off for 4 hours with meds??
This MIGHT be very illustrative as to what is causing his problems. Ask your doctor about this.
PArkinsons changes us for ever. You probably will never get your pre-PD kevin back, I am sorry to say, but you CAN maximize the time left to him. kevin CANNOT give up and must look at every day as going 12 rounds with Muhamed Ali (pre-PD!!)
I Am sure you two have many good times left to you. You just might have to look a bit harder to locate them.


Charlie

.. I know that you mean well, my friend, but I most certainly have researched DBS and I feel in my head (stupid pun )that it would NOT be the correct choice for me. Of course I DON"T KNOW if i'm correct, nobody does until they get it done and programmed correctly, but there are some "warning signs" why DBS would only be minimally helpful to me.
I don't hardly have any tremor whatsover, except the odd mouth tremor on certain infrequent days, and when i'm "super stressed". My dyskinesia is severe but can not be called tremor, and can be marginally controlled by meds; it's just not the way that YOU exhibit PD symptoms. What is preventing me from joining the life of the "get arounds", is muscle weakness and poor balance because of it; a manifestation of dystonia; not one of the DBS strong points towards a "fix". I am definitely going to get a reclining bike, because muscle weakness in my calves could be helped by this. I am also a chronic pain patient (in more ways than one; ), where dystonia in my joints is caused by severe muscle cramps, coupled with bad arthritis; once again, a condition in which DBS is supossedly minimally effective.
Charlie, is is great to suggest DBS, and i thank you for caring, but not to be become too adamant about it DEFINITELY going to change someone's life. I don't know the TRUE figures, but 40% has been kicked around as a figure that DBS does not help for PWP. How would we both feel, if DBS did more harm than good? ; i would think.
And Gayle, i, like you and Kevin, find it a bit depressing to read here simply because of the lack of people saying how X number of years has gone by and things are only getting worse. With time , we become the ice packed hard, with the lighter snowflakes on top of us. I tend to want to just shut up and not post as i don't want to bring the others down.
And Charlie, PD depression is different for each of us, as i'm sure you can contemplate. Right now i choose to forego medication for depression, simply because i don't like the way it makes me feel, and i have to learn some new coping skills.
And to all the others who replied here, many of us ARE getting on. It's just a natural progression of time, and like Paula says, you won't know how you are going to feel untill you get there.
JUst have guarded hope and do the best that you can. I never did undrestand exactly what "living one day at a time" meant, untill i just started to forget abotu the past and not think about the future.

Like you, I also had DBS. I had no choice. Because of the genetic component of my illness, I would have died without it. Even though it was a life saver, there are drawbacks. I have had a frozen arm for almost 2 years. The doctor could not have an MRI and kept putting off a definite diagnosis because he couldn't rule out other reasons for my pain. After two years of suffering with it, he finally shot my shoulder with antiinflamatory drugs and it has helped tremendously. For those who are not aware, MRI is not to be done on people who have had DBS.

DBS surgery can prevent you from participating in many promising research programs. As Jean ofter says some of these research projects are needed to learn more about what Parkinson's is. As much as I would like to participate in some of the new scanning tecniques I am unable to.

I do not regret my DBS surgery. Since I had it I have been able to see two of my sons get married, my first grandchild, and was able to help my oldest son when he hit bottom and would have commit suicide if I hadn't been there for him to reach out to. He is now a successful truckdriver. But I would never tell anyone that DBS will be the answer to their family and the patients prayers. It is a great service you do well by educating the Parkinson's community about DBS, but you cannot prescribe the procedure for everyone with PD as it has to be an individual choice.

Love,
Vicky

I just wish that people would make informed decisions. I had NO tremor before my DBS either, just wild dyskinesia and bad dystonia. There are no figures for overall effectiveness but I have NEVER heard the 40% figure. The most I have have seen is 15% non-effective.
I just hate to see you suffer unnecessarily my brother. I do realize that it is your decision, just know the FACTS before you dismiss it out of hand.
Why don't you get a workup for a DBS with a doctor you trust and see if they think it would help you??

Then you can decide.......

Charlie

Thanks for this thread ol'buddy!

Im still somewhat in the beginning of this mess, and I've learned more here from you folks than I can list..Getting an education from the voices of experience has paid some great dividends, and has given me some good tools to work with in dealing with this disease

I got out of the rat race and on SSDI ASAP, and I am thankful for that..Now I do what I can do, when I can do it, and find satisfaction and enjoyment in it..Its alot easier, and less stressful when you can move at your own pace, and the bills still get paid

I try my best to avoid stress..I avoid stressful situations like the plague, because my pd symptoms are the most vulnerable to it, and I feel like I have 10 yrs of progression dumped on me when I am upset

This has been a bad week, and I've put myself to the best of my ability in the 'This too Shall Pass" mode, to get through it

My boat went into the shop for outboard repairs..Not a big deal..I planned on it weeks ago..But then I was heading to my girlfriends house this past Saturday, and my truck broke down on the hi-way, about 50 miles from home..I called AAA and got towed home, only to find out that the engine blew..I just bought the truck last Nov..If that wasnt enough, there was a man who drowned at the beach in the bordering town..and come to find out it was a man from my YOPD Support Group, who was training for a Triathelon, who has had pd for 15 years..He was my contact to initially get involved in support..He was also the guy who showed up at Congressman Jim Langevins Press Conference to give me some support, as I was invited to it because of my PAN position, and was shaking in my boots in front of the TV cameras..His sense of humor was what broke the ice for me..Im sitting here now, waiting for a call back from a cheapo car rental agency, so that I can get to Don's wake tonight.This is the week from hell!!..I normally live a day at a time, but I'll tell ya..Im looking at next Friday with a passion right now, when hopefully all will return back to normal..

Im not an expert on DBS by a long shot..But Ive seen miracles, and Ive seen not so good results..Charlie is obviously one of the miracles..There is a guy in my support group who had it done last Dec, with remarkable success!..He walked into the meeting like a new man, and he did have a great deal of success with the fatigue problem that had been plaguing him..There is a woman who had it done recently who did it in the early stages of pd..(dx about the same time as myself).. because she couldnt tolerate the meds..She hasnt been programed yet, so Im looking foward to seeing her results..Most of the folks Ive met have had good results with DBS, and like I said, Im no expert, and dont know all the details of their case..But I guess my point is..is that I look at it as hope