New girl in town

Hi everyone, sorry it took me so long but I'm new to all of this email business! I have PD and was officially diagnosed about two and a half years ago. On Oct 8. 2014 l had DBS surgery to both sides of my so called brain😇 However I now am experiencing problems on my right side, hand tremours, stiffness in my hand, balance poor, pain everywhere, toes curling under, poor to nonexistence sleep, hesitation walking which lasts longer and longer. I have more problems but I won't get into it on my virgin visit!! Maybe later if anyone contacts me! How's that for starters??

26 Replies

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  • Hello Chris0846

    Glad to see you here.

    Just one question why the dbs so soon.

    Bailey

  • I was wondering the same thing?Why so soon?

  • Bailey of Texas

    I was young, female and had only taken low dose of sinemet which was not working at its full potential. I had done some research and knew this was something I wanted to do eventually. I was also recruited to participate in a 25 person study group for one year. I am also not taking any meds at all. Plus I could not bear the thought of my family watching me deteriorate too quickly. Plus I suspected PD for at least 5 years in spite of a local neurologist telling me I had PD then 1 year later recanting his diagnosis which led me to London On.

  • You will find this site to be very educational.

    Keep posting and relate your entire story and and you will get advice for your condition.

    One of the things i think you will find is most PWP agree that exercise is the one thing that all of us can benefit from.

    Bailey

  • Does babysitting 18 month old twin girls full time plus one 7 year old count as exercise ? It's all I can do for now and my house shows it!!

  • Yes it does. That is what I read somewhere.

  • Thanks I really needed to hear that!

  • Chris

    Of course the physical activities that go along with all that babysitting is good but I can't imagine that the stress associated with it is helpful........unless you can say that you love babysitting . Stress is not good for PD. Do you have an option? You mentioned your house is a mess. Usually that goes along with babysitting, an added stress. With PD we like to have our house orderly to facilitate our daily activities.

    You mentioned DBS. I understand that most people have had great success with that treatment. Maybe you need an adjustment. I'm afraid my reply may not be encouraging but the Site is very educational and a way to reach out. Even feedback like mine can be rewarding. I care as others do; otherwise I wouldn't bother. I am female. My husband has PD.

    You need to assess what you need to do next...maybe the adjustment. When you have a minute keep us updated.

    Thanks for your posting.

  • I realize that stress is not good for me and that order in my home is paramount, but for the time being my life is not my own. There is obviously more to the story but for the time being know that all is being done to make my life stress free. Just to let you know I love those kids very much but they are really not the problem here, but that's a long long story!!!

  • Yes Chris

    Everyone who writes on this Site has a set of circumstances that we are constantly working around and probably changing for the best. I know the rewards of being around and loving children . Being around them is delightful and can create a lot of positives.

  • It sounds like you need an adjustment to your stimulator. Most pwp with DBS require periodic adjustments to the settings.

  • I know but I'm not quite due yet plus I'm waiting for another situation to clear up!

  • Hi

    It sounds like your programming might not be optimal. Why are you not taking any sinemet?

    Bob

  • Part of the study I was involved in. None of the 25 participants are on anything. Now that the study is done I can opt for drugs if I wish, I don't at this point feel the need. Hopefully I can work out the blips I'm feeling otherwise it'll be drugs for me. When I'm ready I'll tell my whole story, until then I'll wait it out until my situation improves!!

  • Chris, welcome. My husband is way down the road from you, and we have been dealing with this/researching PD since 1995. He too has had DBS....in 2009. Adjustments are what it is all about. An experienced adjuster, whether from the manufacturer, or a Doctor, or PA trained specifically for this specialization.

    I have watched his movement disorder specialist spend 90 minutes with him adjusting and readjusting to keep even his little finger from having tremor.....(when the reason we went in was his voice had become very faint and whispery). We bought a back up "remote" to have one in the home and one in the car at all times." We drag it out if the security scanner at Costco turns him off.

    This, and a couple of other websites are what keep us informed. Personal experience, anecdotal stories, and threads that follow a single subject have taught us a lot. Dr's, unless they have PD, cannot know what sufferers go through. I can empathize, sympathize, and use past episodes to try to help Mike....but I cannot feel what he does. ASK EVERY QUESTION here. Nothing is taboo, nothing is laughed at. There are no dumb questions, just dumb people that won't ask.

    Have you contacted the Parkinson's Disease Foundation to get your free "Aware in Care" Hospital, traveling kit? It instructs you to carry a remote and any Rx at all times. You can contact me privately and I can tell you about other Texans I share info with. Kaiser Foundation filmed Mike and I as part of my breast cancer stories. You can see our story (during my saner moments), at: http_kaiserpermanentecarestories.org_justine-and-mike-miller-steady-together-despite-bumps-in-road . It streams thru YOUTUBE. And my email is justine2@ca.rr.com.

    Best of luck to you young lady. And my own doctor nags me about regular exercise so I bought one of those 10,000 steps pedometer. Working, taking care of the house and Mike and his tornado lifestyle and having a 6 year old live in our multi-generational household had me doing over 12,000 steps on any given day....unless I am sick. A hug to you this Sunday morning.

  • I'm getting so many responses I can't keep up today! It's Sunday and I'm having a big dinner cooked by myself and hubby so I'm going to respond hopefully tomorrow in detail using your email if that is okay and I will go into more detail of what is happening with me!

  • Greetings Chris. Two quick ?'S... Do you know the electrode site in your brain? There are 2 options, the subthalamic nucleas STN, or the Globus pallidus internus GPI. The STN is the most common.

    Also are you tremor dominate or Postural instability-gait disorder PIGD? Tremor dominate is the most common symptoms presentation type.

  • Please put this message in wording a novice like myself can understand! I think I know but I am not a technologic person and am fairly uneducated in the jargon!!!

  • Ha ha i just had to laugh at that noronic geek - I'm sure he meant well, Chris. :)

  • Currently there are two locations in the brain where the electrodes for DBS can be placed. Either the STN or GPi. Based on your PD type and history your surgeon chose one of these sites for the electrodes. For example, I am not tremor dominate with my PD, I have more balance issues. As such my DBS is place in the GPi region.

    Basically PD comes in two types-- 1) tremor dominate and 2) postural instability with gait disturbance (PIGD). You may have some of both or be primarily one or the other. One of the things that the surgeon uses to determine which region (STN or GPi) to place the electrodes of your DBS is which of these fits your PD profile (PIGD or tremor dominate).

    Hope this clarifies the lingo a bit for you.

    Chris

  • Well done...

  • A tiny bit .... :)

  • Hi Chris, alwaze gude to "see" a new face :) in here.

    Sleepless? Yeah, me too - no more drugs for me I said - just make it badder. Try classical music - you'll grow to like it. (Google."Music to aid or induce sleep")

    Good luck and nighty night ....

  • P... reply to your question my dear amicable admirer (Aside to bored audience: My only 'admirer' in here' lol)

    Hard to come up with a palatable answer alas tt42. I'll have to gain authority and counselling via Knutties in the Sky Society.

    You must understand this communal band of eccentrics are, by their 'invisible' apparitional co-existence, sworn to a sworn ancient oath to their self imposed leader, King Oathless-Oafless

    but hold back ... run my friend .... I have been discovered by his spies having illicit discourse ............ go ......go .......go for they aaaaaaaaaaaaaaaaaaagh ............goodbyeeeeeee ... reply to your question my dear amicable admirer (Aside to bored audience: My only 'admirer' in here' lol)

    Hard to come up with a palatable answer alas tt42. I'll have to gain authority and counselling via Knutties in the Sky Society.

    You must understand this communal band of eccentrics are, by their 'invisible' apparitional co-existence, sworn to a sworn ancient oath to their self imposed leader, King Oathless-Oafless

    but hold back ... run my friend .... I have been discovered by his spies having illicit discourse ............ go ......go .......go for they aaaaaaaaaaaaaaaaaaagh ............goodbyeeeeeee I am gon... reply to your question my dear amicable admirer (Aside to bored audience: My only 'admirer' in here' lol)

    Hard to come up with a palatable answer alas tt42. I'll have to gain authority and counselling via Knutties in the Sky Society.

    You must understand this communal band of eccentrics are, by their 'invisible' apparitional co-existence, sworn to a sworn ancient oath to their self imposed leader, King Oathless-Oafless

    but hold back ... run my friend .... I have been discovered by his spies having illicit discourse ............ go ......go .......go for they aaaaaaaaaaaaaaaaaaagh ............goodbyeeeeeee

  • o=oops I'm sorry about that repeated text, it certainly wasn't meant. that's occurs sometimes if I have back to back late nights when I can't sleep too easily.

  • Booster you can edit your own post at any time. Tap the arrows. For the drop down menu.

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