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Kaydee last won the day on September 29

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About Kaydee

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  1. Also diagnosed at 45 in 2011. Have 4 kids too. My youngest are now in high school. Other two in college. Mirapex was bad for me. I call it the lost years. I was zombified on that drug. Emotionally flat and ICD's, sleepy all day with insomnia at night. Had DBS 1 year ago. Off all meds. Feel healthier off meds. My youngest kids were 9 when I was diagnosed. Being a parent has been difficult with the depression/anxiety/med side effects. But I do the best I can.
  2. I go to one in my area. About 1 hour drive. Very positive group. Lots of us have DBS.
  3. Kaydee

    For those that think C/L causes Dyskinisia ?

    I don't know if levodopa causes dtskinesias or not but DBS without levodopa can cause dyskinesias. They are called SIDs or stimulation induced dyskinesias. I get them. If I exercise I turn down my DBS or I get them. Also have to adjust my stim during the day. Start low and increase as day progresses. Too much -dyskinesias or flappy arm. Too little tremors.
  4. Kaydee


    @cereus will since I am not taking meds it must be part of disease and not from meds wearing off. I have been off all meds for 10 months. I am seriously considering cannabis after 7.5 years of the disease. I didn't try earlier as I was concerned about sending wrong message to my 4 children (2 are adults now). But at the point now - going to try. 1 glass of wine isn't working - I don't want to drink more than that. One way to describe my agitation is I cannot sit still. Going to a movie and having to sit for more than 30 minutes is like torture. I hate this symptom too - would rather have tremors/pain/stiffness than this. I called the PD nurse hotline today and asked about cannabis. What strains work for restlessness/agitation and how to take it. They are going to research and call me back. The nurse did say cannabis can make anxiety worse for some people.
  5. Kaydee


    @papa57 - that is how my anxiety started when I was on meds. Part of the driver to do DBS was to reduce anxiety from wearing off. DBS helped. Off all sinemet. Had surgery. Almost 1 year ago but starting to have anxiety in afternoons again. Last DBS Programming she was able to alleviate some of the anxiety but still having it. I don't want to take sinemet for anxiety - feel healthier off drugs but need something to make my afternoons so I can interact with my kids better.
  6. Kaydee


    - I experience more of a restlessness agitation. Always worse in afternoons - evenings. Difficult to sit still or stay calm when dealing with my teenagers meltdowns. I did ask on Ask the Dr forum and Dr. Okun suggested cannabis or cbd. Legal in my state now. If I have a glass of wine it helps reduce the restlessness/agitation. Unfortunately the timing of this is when I need to be calm to interact with my two teenagers. So it is impacting my relationships. At least it helps to know I am not alone in this. @cereus hope we all find something to help. After DBS off all meds and trying to avoid going back on anti-anxiety pills.
  7. Kaydee


    Dr. Okun - I have had progressively worsening anxiety over the course of my disease. Timeline: April 2011 -diagnosed at 45. Tried many meds. Tremor dominant. Spring/Summer 2017: Dyskinesias from l-dopa . Couldn't tolerate amantadine (suicidal ideation). Referred for DBS eval. Also started lexapro for restlessness/agitation. Lexapro helped. Oct 2017 - STN DBS in left brian/right body symptoms. Within 1 month came off all PD meds first, followed by titrating off lexapro too. DBS Programming worked from the start. Have had some successful programming tweaks using directional leads for mild hip pain/anxiety. Some mild stimulatuon induced dyskinesias but able to turn up or down IPG to control. Overall-very pleased with DBS over PD meds. Sept 2018 - Still off all meds. Feel healthier off drugs but... restlessness/anxiety is slowly coming back again. Also apathy a bit worse now - harder to do normal activities. Anxiety has been for me the worst part of my disease as it progresses. To be more specific on what I feel it is more of a restlessness, agitation, inner tremors or inability to sit still. Anxiety for me is NOT worrying about bad things happening. (Clarification- I used to have obsessive thoughts- before DBS, not now.) Questions: 1. As I have read through posts sometimes the solution is to reduce time between l-dopa doses to treat off-time anxiety. How do you and patient decide what is the better option between anti-anxiety meds or reduce time between sinemet doses? 2. How does anxiety typically progress over the course of Parkinsons disease? Are there progressive trearments? 3. What is the biological cause of anxiety in PD? Are there treatments based on biology of PD anxiety? 4. Can certain foods trigger anxiety? Foods to avoid? Thanks so much for all you do. I love your forums and helpfulness.
  8. Kaydee

    Early DBS Study

    Good point about the honeymoon period. I never had one.
  9. Kaydee


    https://parkinsonsdisease.net/stories/spun-control-rytary-shortage-neuropsychiatrist-dangerous-development/ I keep hearing of more PWP particularly women experiencing anxiety on levodopa/carpidopa. Above article is specific to Rytary, but I don't think it is only that med. Sharing because this should be more widely discussed. Dyskinesias although visible were not near as bad as the anxiety I suffered from.
  10. Kaydee

    Early DBS Study

    I just do not get how you could do a blind study and not turn it on. It is so obvious when it is on or not to both the patient and the programmer. From article "All participants will be implanted with DBS electrodes, but only half of them will be turned on at first, and neither patients nor the doctors who study them will know which devices are active. After two years of double-blind study, all the electrodes will be turned on, then monitoring will continue." I had mine turned on 2 weeks after surgery. The doctors and patients will know if it is turned on or not. It is immediately obvious.
  11. Kaydee

    DBS Programming Sessions Per year

    6jb49 - which system do you have? I have the St. Jude-Abbott which is in mAmps and not volts. Relationship between mAmps and Volts is: I(A) = V() /R(Ω) R = impedence = 1237 for me initially with first program. I know it increased after the programmer switched it to 1/3 of the directional lead it went up to a much higher impedence but I don't know the exact number. It is not visible on my controller. It was above max though. She didn't seem worried though. 1.40 mA ~ 1.70 V (with 1237 impedence) program 1 (no directional lead) So my estimate for 1.4 mA w 2500 impedence is 3.5 V. ( program 2 w directional lead) So can't compare the two without knowing impedence and using directional leads can increase it. Since stim is going through smaller area. The last time I went in for proramming (really a check up) the programmer lowered my lower limit without me asking. I haven't needed it though. I have a pretty big range to play with. .5 to 2.5 on the program I use. Brain stimulation is a whole other feeling. How long have you had your DBS? Sounds like your DBS is working pretty well. I am looking at my current situation as my second chance at life. Gotta enjoy this time I have now! Trying new stuff, taking trips with my kids. I still get tired but I can make the most of this new DBS me.
  12. Kaydee


    I have had increasing anxiety as my disease progressed. I am sorry you are feeling this too, but you are not alone. It started with adreniline for me. Watching certain live sports would make me feel horrible. Then movies- the noise was too much and it progressed to more agitation and restlessness. I couldn't sit still for more than 30 minutes. And my thoughts became obsessive. I would get stuck on something. I couldn't shut it off. Was bad for my relationships with my family. This worsening progression happened over years. At first I took klonapin for rare sporting events for my kids I didn't want to miss. It helped a lot. I was pretty loopy on klonapin though and couldn't drive when taking. I probably waited too long to take another drug. When I was going through the evaluation process for DBS I finally decided to start low dose lexapro. It did help. Wish I had started earlier but I was so afraid of meds at that point with some of the horrible side effects I had experienced (mirapex-icd, amantadine-suicidal thoughts) After DBS I no longer needed Sinemet, and also no longer need lexapro. For now. I suspect the restlessness/agitation/obsessive thoughts were side effects of sinemet for me. But no way to be certain, it could have been PD and DBS is helping. I have to say severe anxiety made my life a living hell. Not being able to sit still and ever relax is torture. Oh yeah - I have been seeing the same therapist for almost 6 years. She has seen me through everything (mirapex hell, all the different drugs etc). You can try to manage anxiety through exercise, meditation, proper diet, but for me on sinemet I needed the anxiety med. It really helped. I have found depression much easier to manage with nutrition and exercise than anxiety. I hope you find some peace soon. I wouldn't wish severe anxiety on anyone.
  13. Kaydee

    DBS Programming Sessions Per year

    jb49 - I didn't even know you could get dyskinesias from stimulation before my surgery. My surgeon said it is a good sign they found the right spot. After my first programming (off meds) 2 weeks after surgery, I took my meds and went home. Dyskinesias from combination of drugs and stim were making my flappy arm (my non-technical term for my dyskinesias) go out of control. At the time I followed my programmers advice and slowly lowered the stim. I had to cut in 1/2 to get the SIDS to stop. From 1.7 to .85. Then it took me a month to gradually stop sinemet and increase the stim. Lined out at about 1.2-1.3 mAmps. Loads of fun going through drug withdrawals too! Can you say sugar/carb cravings? That was not fun but not the first PD drug I had withdrawals from. Being able to describe the symptoms vs side effects is very tricky. Video can help too. My dominant visible symptom is left arm tremor. My dyskinesias happen in same arm but movement is very different. Also left foot drag and anxiety. DBS helps a lot with anxiety for me. Again, I did not know it could improve anxiety before my surgery. My second programming I specifically asked for the setting my programmer saved for us to try at a future session. I felt calmer kinda felt like moving through water. Relacing but like the air around me had more resistance. So when my anxiety was coming back, figured I would give it a try before drugs. It worked. Still I struggle trying to use stim and exercise to find a balance for now. For me it is a fine line between tremor/dyskinesias. Amantadine I cannot tolerate so not an option for me. So I cannot set and leave my DBS at one setting. Fatigue, exercise, and just my daily cycle affect how much stim I need. Learning curve for me. At least one good thing about being off all meds is I am more aware of how my activities affect my symptoms. I think it would be really interesting to study those with DBS and PD who are off meds. I struggle with proper vocabulary for symptoms as well. Like inner tremors. I feel them before they are visible. Lately I started a new physical activity. Canoeing in a six person canoe. Before we start, I turn my stim down from about 1.35 to 1.15. The day I forgot my SIDS got pretty bad. Hard to paddle correctly when your arm has a mind of its own. Noticed a new leg tremor about 1/2 way through our 1.5 hour workout. This is in my leg where I hadn't noticed tremor much beforr- but more of a fatigue tremor - pushed past my comfort zone. But it doesn't interfere with my ability to paddle. As soon as we stop I have to switch back to 1.4 or so. I am hoping as I build up stamina this will reduce. Also being self aware during programming. Having a good programmer is crucial. Mine is a nurse practitioner. She is a good listener and has excellent emotional intelligence. DBS is a whole new world. We are the rare ones. A lot of people even in the medical field have never even heard of it. Trying to make the most of DBS and my life now that I have this second chance. So grateful for this treatment.
  14. Kaydee

    DBS Programming Sessions Per year

    Every 6 months or as needed. 5 times total since surgery. Only 2 different settings needed since surgery. One programming I just couldn't turn it down low enough to stop SID's (stimulation induced dyskinesias). So only took about 5 minutes to reduce my lower limit on my amps. Last appointment no changes needed. My next appointment will be my 1 year follow up where they videotape again on/off meds. Standard practice. Since I am off all meds, will just turn the DBS off.
  15. I had Parkinson's genetic testing done through my health insurance. Also had 23&me testing. 23&me is not full testing. I carry a rare GBA mutation that would not be tested for on 23&me. 23&me only tests for a few mutations on a few genes. Nor does 23&me testing meet federal standards for genetic counseling. I was tested on 75 different PD genes - complete genetic testing - not partial. Just on the GBA gene alone there are about 300 mutations. For comparison, 23&me only tests for a couple of the most common GBA mutations. So please do not assume that you do not have any mutations because the 23&me data or Promothese doesn't indicate them. Only tells you may not have the most common mutations. If you have young onset PD your health insurance may pay for full genetic testing and genetic counseling. Mine did. Part of my formal report was to check back in 5 year s or so, as 75 known PD genes now, but in 5 years there may be more.