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Jill Kosiba

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Jill Kosiba last won the day on January 15

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About Jill Kosiba

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  • Birthday 11/07/1969

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  1. Jill Kosiba

    Mucuna Extract vs Mucuna Whole Herb

    Hello everyone, I have also been using the Nutrivita Mucuna Pruriens (MP) powder for about 2 1/2 weeks now (bought it a while ago, but was hesitant to try it until I did hours of research about its efficacy and safety). My husband bought a scale and we measure out 100 mg into vegan capsules we also bought. (We joke about a future in pharmacy!) I had been taking one C/L 25/100 at 7 AM and 1 PM; .125 mg Pramipexole at 7 AM and around 8 PM; and often take .5 mg Lorazepam before bed if I'm having trouble falling asleep. So, I started by substituting my afternoon C/L with MP. It has been going well so far, and my left foot has stopped wanting to wiggle around like it did when I was just on the C/L. In the next few days, I'm planning to substitute the morning C/L also. I may add 1/2 C/L tablet to each dose help with the effectiveness. Overall, I feel fewer side effects, but the bradykinesia in my left hand/arm seems to be just slightly worse with the MP. However, I realize I am on a very small dose of all of my medications and have room for improvement. Since I was only diagnosed in October 2017 (w/ symptoms since early 2016 at least), I'm trying to take it slow...my main objective in taking medications early on was to help with the "dark cloud" that had settled over me and to help me feel energetic enough to exercise regularly. Just a note: I was originally on just one 25/100 C/L in the morning and three .25 mg Pramipexole a day...but was retaining fluid and uncomfortable, hence the reduction in the Pramipexole. Like everyone has said, the medications affect everyone so differently, it really is trial and error. Overall, I figure the medications/supplements don't "cure" us anyhow, so I'm better off using whatever ones make me feel the best, have the least side effects, and may even be neuroprotective - there is some evidence of this for MP although not many studies have been done because it's a natural substance...not something big pharma can make a lot of money investing time on. I use my Theracycle for 40 minutes nearly every day, followed by stretching and some strength exercises. I know this has also helped me to feel better! I've added supplements as I learn more about which ones can help, and I'm taking baby steps towards a healthier diet (drinking more water instead of coffee, etc!). This is the hardest part for me - before my dx I lived off of coffee all day and sometimes didn't eat until dinner time...so unhealthy!! Wishing you all the best and keeping everyone in my thoughts and prayers. 😊 Jill
  2. Jill Kosiba

    Early PD and vigorous exercise

    Hi Tweets32, I can relate to your story. Since I was diagnosed in Oct 2017 (after suspecting it for months), I started to ride a stationary bike nearly every day for a half hour at a moderate clip and added stretching and strength exercises to the mix (with the direction of a local PT). I attended a Good Start program the end of November and the PT speaker (who was great, btw) indicated that in order to get the full benefit, you should exercise at a more intense level for a minimum of 2 1/2 hours a week. Sooooo...I kicked it up a notch, nothing crazy, but within a few days every joint in my body was cracking and popping frequently throughout the day. My shoulders have been sore since then too (particularly one, and it's on my "good side", which is frustrating). I thought maybe it had something to do with the Pramipexole that I'm on since that can cause swelling, but I've reduced my dosage significantly, and it's still happening. Neither my doctor nor my PT now why it's happening either...I'm a mystery. Short story long, I've gone back to cycling at a moderate clip as I'm sure that's better than nothing at all...and being active makes me feel better physically and mentally. So, I just wanted to say that I agree with you; you don't want to push yourself to the point of extreme fatigue and injury. I'm taking it easy with my shoulder in hopes that whatever is going on will heal and I can start to gently strengthen it again over time. Wishing you the best!
  3. Jill Kosiba

    Diagnosed at 40 very scared

    Debsten, I lost my joy along the way too; but, can honestly say things have gotten better and not worse since my diagnosis (anxiety/stress-wise, that is). I found the medications to help "lift the cloud" quite a bit; and, I hope they do the same for you. When I'm having a down moment, I also try to think about the fact that things could be worse (i.e. I could have been given weeks to live, etc). It helps me to keep perspective. The hardest part for me was thinking about what I had expected my future to be like, and now coming to terms with the idea that it may not be like what I had thought!! But, I try to keep the faith and this has certainly opened my eyes to see how many people are suffering from chronic conditions and need my prayers. The things I used to complain about seem so trivial now... I hope this encourages you at least a little. Sending hugs...
  4. Jill Kosiba

    Diagnosed at 40 very scared

    Hi Debsten, Sorry to hear that you are going through this stressful time...I know it isn't easy!! I just wanted to "weigh in" since our stories have some similarities. I had subtle symptoms for almost two years...starting with not being able to hold something for a long time with my left hand before it would begin to shake. I was diagnosed with PD in October 2017 (at age 47...I'm now 48), with DaTScan results confirming a "decreased tracer uptake" in the right side of my brain. They ordered the DaTScan because my symptoms were clinically mild, and some of them were not typical...like hyperreflexia, and my MRI did show some "non-specific changes to the white matter of my brain" - which they think may have been related to my previous Lyme diagnosis. In fact, they were first leaning towards MS. I still have my sense of smell and do not have issues with constipation - although I do experience some stomach bloating, but I think it may be related to the Pramipexole that I'm on. I have read reputable research that suggests women tend to have fewer issues with loss of smell, as well as people with some types of genetic PD. (My maternal grandmother and paternal grandfather both had PD.) My initial symptoms were very similar to yours: left hand not cooperating when typing, etc, left arm-swing reduced, left foot dragging a bit, tightness in left thigh (especially at night), occasional pain in back and joints (mainly hips and shoulders), and what I would describe as an action tremor. As of late, my joints have started to click and pop a lot after I tried to increase my exercise intensity; so with my doctor's okay, I'm titrating off of the Pramipexole (since I'm thinking it MAY be the cause of internal swelling as it's considered one of the possible side effects) and titrating up on the Carbidopa/Levodopa. I've also considered Mucuna Pruriens...my neuro hadn't heard of it. But as Waruna said, it's been recommended by Dr. Okun in this forum. I think it's just a bit tricky getting the right amount. My DH bought a drug scale and some empty capsules to weigh and fill. But, I haven't tried it yet! I'm hoping and praying for your sake that the DaTScan is negative...but, I wanted to share my experience with you.
  5. Jill Kosiba

    Side Effect of Lorazepam?

    Thank you so much for your thoughtful response! I will discuss the possibility of Xanax with my doctor - it sounds like a better option. Ultimately, I'd like to not rely on any medication to help me sleep, but I love my sleep; could have easily traded lives with a bear if given the option! I definitely bite my tongue in my sleep, so I'm sure there's a chance I grind my teeth too! I'm overdue for a dentist visit and will have to discuss that with them. The feeling of pressure in my head hasn't been as frequent recently, so that's good news. Good luck with the "Florida" room! I can relate to the cold - we have our woodstove going here in MA right now.
  6. Jill Kosiba

    Just diagnosed at age 40

    Amy2beth, Yes, I am on Carbidopa/levodopa 25/100 mg (just one in the morning), and Pramipexole .25 mg (3X daily). These are pretty low doses from what I understand, and they definitely work to take the "edge off" of the bradykinesia and stiffness that I have; they also have seemed to help lift the negative cloud that was hovering over me. I take Vitamin D 2,000 IU, Krill oil supplement for joints and healthy fat, and Magnesium. I've been researching other supplements...think I need to get some CoQ10 next. Also, working on my diet...which has a lot of room for improvement! I actually lost a lot of weight due to the stress over this past year, so I've been trying to pack on a few pounds in a healthy way. Honestly, I would probably do okay without the meds, but having some relief helps to put the PD out of my mind...and I hope to stay on the lowest doses possible for as long as possible. Lastly, if you do end up on a dopamine agonist like pramipexole (Mirapex), it can cause compulsive behaviors and sleepiness (to name a couple)...just to caution you.
  7. Jill Kosiba

    Just diagnosed at age 40

    Hi Amy2beth, I was diagnosed on 10/23 (although I had suspected it for months). I was 47 but just turned 48. I know it's scary, and believe me, I've had my crying moments. But, once you've had some time to process things, it won't seem so "raw" every day. I'm sure your MDS will help you come up with a plan to manage the symptoms the best way possible. I have joint pain off and on, mostly in shoulders and hips, and lower back pain. I find that exercising helps: I ride a Theracycle daily, walk, and try to do some simple yoga poses a few times a week. Before my diagnosis, I did not exercise regularly - so there is hope for everyone out there! Just take a deep breath and try not to worry (I know that's easier said than done)!
  8. Jill Kosiba

    Newly Diagnosed - Some Atypical Symptoms

    Thank you, Dr. Okun. I will talk with him about it.
  9. Jill Kosiba

    Newly Diagnosed - Some Atypical Symptoms

    Waywrd1, Thank you so much for your thoughtful post! This morning, I felt much better after my initial dose of CL & Pramipexole...so I think it's starting to kick in, which is encouraging! I do think the CL helps more though (as Dr. Okun had suggested) because, after my mid-day dose of just Pramipexole, I didn't feel as good, but still better than yesterday. I've also been exercising daily, which is new for me, I'm ashamed to say. I've been seeing a physical therapist once a week (one who specializes in PD - to help me get started on the right foot), walking, and my hubby just bought me a Theracycle since walking won't be as easy during the upcoming winter months. I really like it so far and they aren't cheap, so I'd better put it to good use!! I've been having one other weird symptom that I've asked the Forum Pharmacist about since I thought it might be medication-related. I get a feeling of pressure/tightness (not pain) near my ears, jaw, and neck sometimes. Often it happens when I'm driving...so strange. I'm wondering if it's due to the Lorazepam I've been taking (low dose, primarily at night to help with sleep), since it started about a month or so ago, prior to the new PD medications. Although come to think of it, I was also on one CL in the morning in the weeks prior to my DaTScan (with a break the week before the test), it could even be due to that?? I'm seeing my neurologist on Friday, so I'll discuss it with him also. Thanks again!
  10. Jill Kosiba

    Side Effect of Lorazepam?

    Hello, I was officially diagnosed with PD on 10/23. Prior to being diagnosed, my primary care doctor prescribed Lorazepam .5 mg as needed, which ended up being every evening to help me sleep since I get such severe tightness in my left leg and groin area. Since dx, I have been on one CL 25/100 in the morning, and Pramipexole .125 mg 3 times a day (titrated from 1 in the morning for the first 3 days, then 2, etc.) Just today, I've finally started to feel some significant impact of the PD meds, especially in the morning, which makes me think perhaps the CL is doing me the most good. The question I have is related to a feeling of pressure that I get near my ears, jaw or upper neck area...especially when driving or using my exercise bike. Usually, I don't feel it much during other normal activity or rest. This sensation started before the PD meds and continues. Could this be a side effect of the Lorazepam?? I've heard it can happen when you are in withdrawal, but I've been regularly taking .5mg a day. For a short period, I would occasionally take an additional tablet during the day if I was feeling particularly anxious (with the okay of my doctor) but I haven't needed to for a few weeks. Also, I have heard that Ativan may not be the best option along with PD meds. I would also appreciate any suggestions on things that would help with sleep. Thank you!!
  11. Jill Kosiba

    Newly Diagnosed - Some Atypical Symptoms

    Thank you so much for your response, it helps to put my mind at ease. I am aware of the impulse control issues that can arise from agonists and will be on the lookout for those. I've heard that Sinemet alone can work well and that there isn't such a need to panic about starting it too early, so if the Pramipexole doesn't seem to help, I will have that discussion with my neurologist. And, thank you for your input about the depression and anxiety in YOPD. It makes sense because I think we tend to wonder more about longevity and staying as well as possible for as long as possible. I will definitely utilize the helpline if needed. Thanks again, I know you have many people's questions to respond to, and I appreciate your time very much!
  12. Hello, I am a 47-year-old mother of four and was just diagnosed with PD on 10/23 after over a year of having subtle symptoms which gradually seem to be progressing. Several months of testing and then a DaTScan on 10/20 which showed uptake of dopamine on the right side of my brain (left side normal) led to my dx. My main symptoms are bradykinesia on the left side, lack of arm swing (same side), stiffness in both thighs (started in left), intermittent pain in shoulders, hips and lower back, feeling of weakness in legs most days (however I seem to maintain muscle strength and walk fine albeit some stiffness on left side) and what I am calling action tremor (for lack of a better term) which is worse on left side, but happens on right side also, with intentional movement of arms and legs. The confusing part is that I was originally given a differential diagnosis of MS because I had an MRI with "non-specific changes to the white matter in my brain", and I have hyperreflexia and what the original neuro thought was spasticity (my PT also thought that). I have started on carbidopa/levodopa 25/100 and Pramipexole 0.125 just in the morning for now, and I will be working my way up to three of the Pramipexole per day. So far, I haven't noticed much change in my symptoms, but I've only been taking the medication for three days, and the doses are low. What I am worried about is possible MSA because some of my symptoms (hyperreflexia, no resting tremor, etc) are atypical for idiopathic PD, and can be found in MSA. My neuro said I don't have any of the other symptoms that usually accompany that, and he thinks it's unlikely...but, I am going to see him in a week so that he can re-examine me and discuss further. He also mentioned that my MRI didn't have any findings that would indicate MSA. In my research, I read that genetically caused PD can present with hyperreflexia...so I guess it's not impossible to have this symptom. My paternal grandfather and maternal grandmother both had PD. The diagnosis of PD is heavy enough to consider, and now my mind is wandering to a possible Parkinson's Plus disease which is unnerving. What are your thoughts based on how my symptoms are presenting and what questions do you think I should be asking my neuro? Thank you!!