Jump to content
helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    

Recommended Posts

Hello to all!

Some may remember me some may not. I am back in the US from Africa. It seems my PD has me at a disadvantage these days. However, I'm ready for whatever is next or at least I think I am. I feel God is with me and I have a loving and supportive family who is by my side. But I am saying "what is next"?! Do find yourself thinking or saying what is next? The thing that sticks in my craw a bit is that my PD is forcing this question and changing my situation. So how is this lack of dopamine in your brain affecting your life and what's next for you? Please share, I know I could learn quite a bit from my fellow shakers and movers.

 

Here is what I am pondering that could be "next" for me:

My doctor wants me to do DBS so does my family? Hmmm wire in the brain?

Do I try for Government disability - paper work! Yikes!

African medical missionary = what skills in the US as far as a career?

Got to find a place for me and my wife to live, where?

 

So a new adventure begins! How about you?

 

Ps - JB are you out there?

 

 

Share this post


Link to post
Share on other sites

Hey jack65 nice to meet you! Sounds like you have been quite busy. I imagine international missionary work must be interesting and rewarding. Sorry your friend and mine, Pd, is forcing you to change things.

 

What's next can be a daunting question. For me it meant leaving private practice and becoming a part time clinical instructor. It's funny how things work because I enjoy teaching so much now and without PD I would never have experienced it.

 

My symptoms are still relatively mild at 40. I don't know much about DBS but I read much more positive feedback than negative on these boards. I hope you land on your feet somewhere good. Let me say Louisville ky is a lovely place you should give it a look. :)

Share this post


Link to post
Share on other sites

Hey Prospector,

Yeah it's a journey isn't it! Teaching is such a wonderful thing to do. I am happy you are living a fulfilling life, what a blessing. Thank you for your encouragement and kind words. I do have some family in Kentucky beautiful state, it's a thought.

 

I did talk with my Doc yesterday and we are moving forward with the DBS, family is all thumbs up so we are going for it. At the same time yesterday he wrote me a prescription for a wheel chair and is giving my handicap plates. Hoping after the surgery I won't need them! He told me not to worry about the disability thing it will happen because of condition and situation. That takes a load of my mind not having money to come in for my wife and children would be quite a burden.

 

So what's next is happening it will be interesting to see how it all turns out.

 

Blessings an abundant health to you my friend as you continue to live out your journey.

 

Peace!

Share this post


Link to post
Share on other sites

Jack,

 

I've had DBS surgery--and so have quite a few of the Parkies who lurk around this Forum--so feel free to ask questions, I'm sure someone will be able to help.

 

I'd say, go for the Government Disability - and, the sooner, the better! (Hint: If you have not been paying in to Social Security for the past five years, you will have lost your eligibility for it.)

 

Have you considered talking to a career counselor at a local college? (You don't have to go to college, just get some good ideas!) Or, perhaps you could purchase the book, "What Color is Your Parachute? A Practical Manual for Job-Hunters and Career-Changers." (2013 Edition.)

 

Got a map? A sense of adventure? Time on your hands? Why not close your eyes, stab it with a pin (the map, that is!)... then head toward the pinned location (if it looks good to you)? After all, you wouldn't buy a pair of shoes without trying them on first would you?

 

In short, my vote (I know, I know... I don't actually get a vote, but a gal can dream can't she?!) is...

 

BE adventurous! Have fun! Go full boar until you can't anymore!

Kim

Share this post


Link to post
Share on other sites

Great advice Kim! This may sound a bit crazy, but I have always loved art. I'm thinking of trying to make a go of it. Jack's shaky art? Become a starving artist? My wife says hmmmm.....?

 

So the DBS, how's it working for ya? The surgery seems well, pretty crazy? Do you have any good general advice for me?

 

They are putting me through all the testing to see if I am a good canadate for it. Last week did the sinemet depletion test, wow do I need sinemet. Should find out soon if its a go or not.

 

The disability thing, my wife and I are going to a counselor to help us figure out, us and pd as well as the $ ?

 

Does it ever piss you off that whenever you type in Parkinson's it always auto corrects and capitalizes Parkinson's. I don't think it should be honored and given respect to be capitalized, I know it's a guys last name but still! I wonder if he is ticked that they named this crappy disease after him. Man! I got to get some sleep!

 

Peace!

Jc

Share this post


Link to post
Share on other sites

The problem with DBS, much like Parkinson's disease, is that we all seem to have different results, different impressions, and, therefore, different aspects of the surgery we may find important. That said, here are my personal thoughts (but, I stress, they apply to me only!)...

  • The surgery itself is just half the battle - the other half is getting good adjustments after the surgery.
  • To that end, it is very, very helpful if you live relatively near a MDS (better yet, more than one) who can make an adjustment and do so in relatively short order (waiting a week or two for an appointment just does NOT cut it if your latest adjustment has left you with raging dystonia that did not develop until three days after the adjustment!).
  • Know what to expect by asking the right questions. Examples: Will I or will I not have a remote control for my device? Do you plan bilateral, or unilateral devices? Will I have a rechargeable battery? Etc.

Now, this next one, I have pondered and considered including because I do not wish to cause anxiety in anyone. However, when I asked--and I asked several times because I have a very, very low pain threshold--how much pain would be involved, I was assured there would be none at all during surgery.

  • If I had it to do over (and, they were candid with me about everything), I'd be asking if anything can be done to lessen the pain of the local shots. Sure, they tell you that the surgery is "painless" because the brain has no pain receptors, but the gun they (literally) shoot local anesthesia into your head with is the farthest thing from painless. HOWEVER, I do, as I have said, have a very low pain threshold.

Well, those are the big points that apply to ME... as I said, we are all different, so feel free to ask questions.

 

On the subject of painting... I used to be a fair artist myself, but since the PD came out on my right side (I am right handed), my abilities come and go. If my DBS is adjusted to a place where my dystonia is controlled, my handwriting suffers horribly. If I am adjusted to where my tremors are abated without meds, I can write, paint, and draw again. We are still working on a good "mixture" for me.

 

For what it's worth, if I had it to do over, I'd have the surgery again in a second. My life is so much better for it.

 

Kim

  • Like 1

Share this post


Link to post
Share on other sites

at what point are you able to get DBS my husband and i were talking about this and i told him i am new to this whole thing, so for me i don't think i am a candidate right? don't you have to get to a point where your meds aren't working any longer. or something like that in stage 4-5, just asking because i have been seeing a lot about it. I don't think I am any where at this point yet, just curious

Edited by sarahjo

Share this post


Link to post
Share on other sites

The way my MDS explained it to me...

 

You are, generally speaking, a candidate for DBS surgery if you are responding well to PD meds, but are rapidly requiring higher and higher doses to keep your symptoms at bay.

 

I was in Stage II when I had my surgery four years ago and I am still in Stage II.

Share this post


Link to post
Share on other sites

The problem with DBS, much like Parkinson's disease, is that we all seem to have different results, different impressions, and, therefore, different aspects of the surgery we may find important. That said, here are my personal thoughts (but, I stress, they apply to me only!)...

  • The surgery itself is just half the battle - the other half is getting good adjustments after the surgery.
  • To that end, it is very, very helpful if you live relatively near a MDS (better yet, more than one) who can make an adjustment and do so in relatively short order (waiting a week or two for an appointment just does NOT cut it if your latest adjustment has left you with raging dystonia that did not develop until three days after the adjustment!).
  • Know what to expect by asking the right questions. Examples: Will I or will I not have a remote control for my device? Do you plan bilateral, or unilateral devices? Will I have a rechargeable battery? Etc.

Now, this next one, I have pondered and considered including because I do not wish to cause anxiety in anyone. However, when I asked--and I asked several times because I have a very, very low pain threshold--how much pain would be involved, I was assured there would be none at all during surgery.

  • If I had it to do over (and, they were candid with me about everything), I'd be asking if anything can be done to lessen the pain of the local shots. Sure, they tell you that the surgery is "painless" because the brain has no pain receptors, but the gun they (literally) shoot local anesthesia into your head with is the farthest thing from painless. HOWEVER, I do, as I have said, have a very low pain threshold.

Well, those are the big points that apply to ME... as I said, we are all different, so feel free to ask questions.

 

On the subject of painting... I used to be a fair artist myself, but since the PD came out on my right side (I am right handed), my abilities come and go. If my DBS is adjusted to a place where my dystonia is controlled, my handwriting suffers horribly. If I am adjusted to where my tremors are abated without meds, I can write, paint, and draw again. We are still working on a good "mixture" for me.

 

For what it's worth, if I had it to do over, I'd have the surgery again in a second. My life is so much better for it.

 

Kim

 

 

 

Thanks Kim,

Good information!

Yes, for me the meds are wearing off quicker and I have several side effects from the sinemet. For me one of the big problems with sinemet is low blood pressure, I pass out rather easily. It makes my wife pretty nervous to find me in the hall way or bathroom passed out. I have finished all the fun testing they put you Through to see if the DBS is a fit. Just waiting now for the final sit down with my doctor. They will put the wires in both sides so two battery pack implants and yes, I will have remote. My wife says she is looking forward to the remote so she can turn me off, hahaha! Yeah can't say I am looking forward to having two holes drilled in my head, I don't know how that won't hurt.

So Kim what medium do you use for painting? I am mainly an oil guy, love landscapes and still lifes. My tremors have added a very interesting type of impressionistic look, hoping the surgery will give me back a little more detail control. I also make brair tobacco pipes and wood jewelry. The wood working art is better for me to control because I can often still my hands by propping them on a table or piece of wood.

Jc

Share this post


Link to post
Share on other sites

thanks kim, for getting back to me, we were under the understanding that you weren't eligible unless you were just at the end and there was nothing else they could do. this is good news even though I don't think I am there yet as my dose of Sinemet is low still. (I think I am at a low dose as of yet,) I only take 1- 25/100 3xs day( 6am.11am,4pm) and 1- 25/100 er Sinemet at 9pm, I take when needed 1- 10mg flexeril 930ish for muscles spasms/contractions. isn't it funny how they say contractions are spasms. sometime the wording confuses me. so you see compared to what I read on the forums here, I am still low medicated. right? or am I just wishful thinking.

Share this post


Link to post
Share on other sites

Sarah, it isn't dose dependent per se, it's more sort of a progression thing. My MDS told me that I was in the top 15% of perfect candidates for the procedure because I met the following criteria:

  1. I was responding well to Sinemet.
  2. I was young. (Well, relatively, I was 50!)
  3. I was functioning cognitively well - above average for my age.
  4. I was emotionally stable enough (neener neener neener--I have it in writing!!).
  5. I was, outside of PD, in good physical health.

I thought the exact same thing you did, Sarah... I remember the first words out of my mouth after my Vanderbilt MDS suggested DBS surgery, "What? Surely I'm not sick enough for that yet?!"

 

He explained to me that the younger you are, the sooner you do it, the better your likelihood of a successful result--immediately and in the long term. In fact, he said the Young Onset patient was the candidate intended for the surgery from the beginning, because patients with YOPD, generally speaking, meet the criteria I have specified. I was, at the time, on six Sinemet a day... up from three a day a year or so earlier. Since then, I have been able to take less medication, but never had need of more. I have had no increase in dosage in four years. My disease, however, has progressed, my symptoms have just been controlled with DBS and medication adjustments.

 

JC, I have bilateral probes, but wires only on one side of my neck with only one battery in my chest. I don't exactly know why one surgeon chooses to do it one way, another surgeon, a different way, but I guess there are upsides and downsides to both approaches.

 

I was into watercolor... and sketching, drawing, writing, craftwork, ceramics, sewing, knitting, tapestry, rug making, jewelry making... well, you name it, I did it! But, these days I either have muscle pain when I do too much of any activity, or my DBS is adjusted so my tremor is gone, but then my handwriting goes to pot, or else, the ability is present, but the creative spark isn't firing! I'm still hopeful though.

 

Kim

Share this post


Link to post
Share on other sites

Hey Kim,

There is a book out called STEAL LIKE AN ARTIST - sounds strange I know but it is suppose to help artists focus on their creativity and ideas. Have not read it yet but it's cheap and has good reviews " Amazon. Hand cramping is an issue for me as well as standing. It helps me if I take some Advil, soak my hands in warm water and wear anti vibration gloves. The only problem is gripping and picking up things with the gloves can be tough. Have you ever thought about trying oil? Nice thing about oil is it stays fluid so long and mistakes are easily scraped off, just a thought for you. I hope you can get back into your art Kim, it's great for the mind, body and spirit.

Take care,

Jack

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now


×