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GypsyGold

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About GypsyGold

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    Member
  • Birthday June 21

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  • Gender
    Female
  • Location
    Australia
  • Interests
    Gold Prospecting & learning about PD mostly. I dream of having a small farmlet & growing olive trees, grapevines & an organic vegie garden. I like the idea of being off-grid and into self-sufficiency but fear my health can't cope without a lot of help.

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  1. Yes, I experience the same thing, it started years before dx and has grown steadily worse. Nothing found wrong with eyes particularly other than slowed blinking, just very slow to adjust to changes in lighting or tracking a bright object on TV or a computer. I keep everything dimmed inside the home (not hard for me as live in a tiny old miners shack which only has two small windows!). I did hear somewhere that wearing blue tinted glasses might help with PD but don't think anything is proven and I haven't tried it yet but am going to order some blue sunnies now I'm reminded to thanks to your post. Here's a basic link about it which might be of assistance: The Blue Light Mystery & PD
  2. I don't think there are words to adequately describe how it feels, so many things affected by PD, besides the obvious things, many subtle changes... Today, I'm reacting to Sifrol ER (Mirapex ER) negatively yet again. This dopamine agonist is causing me truly horrible headaches, messing with my vision, a bit of nausea, emotional upsets and I'm still getting some freezing (scary slipping on ice sensation). It seems I can only tolerate a low dose for a couple of weeks when it seems to work well and then need a "holiday" from it until the PD symptoms become too annoying and then start the process again. My GP upped the strength & doses, added in Sifrol IR but it had the same side effects. It's a good drug for my neuropathy, especially in my legs, but I wonder what it's doing to my poor brain?! I'm going to have to wean down over the next few days & cut the pills in half, then quarter & so on until I'm free of it. I don't think it's a safe one to stop suddenly. I feel like my head is so pressurized I will explode. So, dealing with getting one's medications right is a battle in itself. I think we all need a holiday from PD.
  3. Older thread, but here goes: Yup, my face just hangs down, sorta zombie staring-like as I don't blink much or looks woefully sad (most appropriate when I was working in my funeral home!). Even as a kid ppl wld tell me to cheer up - maybe a forewarning of later PD? It is a concerted effort to make a smile now, the muscles feel stiff and I can't hold the smile very long, the cheek muscles and mouth quivers with effort. I'd put it down to having rare bilateral Trigeminal Neuralgia (TN, the suicide pain, sometimes stated as a less common symptom of PD or CO poisoning), but the mask seems common amongst PWP. I'm the 7th in my maternal line to have PD and the others, as I remember them, all had this same hanging look - my Granny called it her "pan face". The jowls & everything is heading south - looks miserable even if I'm happy!
  4. Yes the sensation of slipping or suddenly stepping on ice was my initial PD problem, still is when meds are wearing off or dose needs increasing. For me this slipping business started occasionally maybe 15 years before dx and is always worse in low lighting or shopping malls with shiny tiles or even roads glossy wet with rain. It doesn't seem to be a vision problem. It became so bad before starting meds that I just could not take a step without inner panic. Often it will turn into a freeze or I start the shuffling and then it improves. It's made me snap my neck back on a few occasions - self inflicted whiplash! Oddly enough, I don't seem to get it or the shuffles when out bush metal detecting, maybe because I'm going at a very slow pace anyway and watching my step more over sometimes rugged terrain. I have to use a walker as a guide when going out or always make sure I grab a shopping trolley to steady me inside supermarkets etc. Using a cane helps too, like you can sense the floor better, so helps compute to the weary brain that there is no massive chasm in the flooring or ice patch. I'm having physio for this atm practicing counting 1,2,1,2 with every step and not looking at my feet which is really hard because I just don't trust them not to make me come to a dead stop. My arm swing has basically vanished both sides, so using light weights, I have to get into a rhythm with a good swing to support the balance and gait. Like many others here, I'm prone to crash into doorways or stagger sideways sometimes or lean forward into a really quick walk that I can barely control. People have thought I'm drunk which is so embarrassing. Terrified of falling as I have severe osteoporosis too. I get footdrop a lot or numb legs below the knees. With the freezing gait, I get a heavy lead-like paralysis sensation up both legs into the butt - it aches, muscles become quite rigid. It's a lot better on my Sifrol (Mirapex) but not entirely under control yet. Hope this helps others dealing with the same issues.
  5. J - Thank you for your kind words!
  6. Thank you for the gift of starting this most important thread. I found it by searching "Stages of PD" on the forum. It's taken me many hours to read every post (124 thus far) and I've already forgotten which particular points hit home which I'd formerly respond to if I too hadn't drifted so far from the safety of the shore. At the moment, as I start the process of testing for MCI, I can't explain the moments of terror or days of serious stuff ups. For some reason, I can express myself better by typing as my ability to partake in or understand conversation is waning. I've no idea if what I'm dealing with is PD related, or if I'm going to end up with LBD, but something is seriously wrong. I don't want anything sugar coated, I want to know what lies ahead and to understand while I still can, the experiences of forum members who are also drifting, perhaps far ahead of me. I'm afraid of drifting into the deep dark waters alone. I don't have a support network around me or a family. I guess folk just stop posting on this forum when computer skills become too hard or they can no longer read much. Do we have any stage 4 folk able to post? I'm not feeling like me anymore, I'm becoming a stiff faced, staring, humorless, shuffling blob with the personality of a turnip and the intelligence to match. My former self sometimes throws me a lifeline when I've got my meds working right but it's a mere glimpse of awareness and then I feel overwhelmed with grief about not achieving enough, immobilized by apathy and frustrated beyond words. I'm 50 and life plans are interrupted by this PD thing throwing its cruel curve ball. I've been through a lot in life and now this to top it off. I've only been diagnosed for 9 months (altho had symptoms many years). I feel I've got to get over the rapids to acceptance - if ever anyone truly does. It's good to have a forum where one can vent without (too much) judgement. About the only portrayal (to share with others) I have to go on is a book and movie called "Still Alice" - which is about a woman diagnosed with early onset Alzheimer's Disease. It touches on some of the terror moments, but nowhere near enough and doesn't show the main character progressing much...
  7. For my two cents it sounds a bit like carbon monoxide toxicity might be a possibility worth considering. It's worth getting a CO detecting unit to check your vehicle inside, recent or current workplace and the entire home environment, or if you are getting neurotoxic emissions wafting in from a neighbor, which can be in woodsmoke or gas. It only takes a little low level chronic CO exposure to cause all sorts of awful neuro problems the medics have hard time pinpointing. CO toxicity can cause Parkinsonism and also bring on/ramp up PD if already predisposed. This is what happened to me. Plenty of info online about CO & PD-like neuro problems in survivors. Some recover over time, others don't do very well.
  8. Whomever stated that PD isn't a particularly painful condition should shuffle a day in many of our shoes. Seriously ignorant and sadly, probably a Neurologist or MDS. Unbelievable and makes me incredibly concerned that our PD pain is merely fobbed-off when the disease is so similar to MS or MND well known for their agony. My PD experience is little but pain of varying types round the clock, years of it. I'd say for me, the pain I get from my sudden freezing gait is horrific - from toe to butt plus the rigidity of muscles & dystonia wherever. I hurt even when trying to sleep. Trying Norspan 40mg patches but having little effect. Seriously hoping medical cannabis will be permitted in due course to see if it resolves the pain. Constant pain is exhausting.
  9. Oh boy...where to start... I'm rarely asked how I'm doing, let alone for any details. My Intended is either in denial or terminally compassionless - a tough ex army PTI who said "There's nothing I can do for you - you'll improve if you want to". I honestly get more compassion from my pets who seem to sense when I'm "off". Sometimes a massage of rigid muscles would seem like bliss, but dream on... I might make up a wee booklet about my specific PD and what meds/when and what my personal symptoms are, but I doubt it would be read by the one person who should be reading it! I did make some items on Vista Print to help me - a keyring fob which is attached to my handbag - it has the medical alert symbol on it and says "I have Parkinson's - I may shuffle or freeze - your patience is appreciated!" and a couple of the same thing printed onto business card sized name tags which can be pinned onto clothing or hung around the neck. This is ideal for use in shops, namely shopping malls which spaz me out. On the back it has my ICE contact details. On the whole, I don't go out of my way to inform ppl I have YOPD, but one recent time I needed to disclose, it was met with "Oh no! You are going to have the most horrible death!" - that was the response from a nurse specializing in geriatric care. This nurse has also suggested I think about "Doing a Robin Williams"...So much for mercy.
  10. Thank you Dianne! I confess I was a dedicated Facebooker for many years and administrating for various groups, but the "Newsfeed" & certain pages etc became so monotonous or distressing I made the choice to deactivate my account about 6 months ago and after a week's initial "withdrawal pangs", I don't miss it one bit. Friends & family just email directly now. I wish our Aussie organisations ran proper forums like this one from their main websites but I'm guessing we just don't have the population or volunteers to moderate such things atm. Other than Alzheimer's, PD is the fastest growing dx so I figure that will change in the future as demand for more personal online contact increases, especially in areas not covered by actual physical support groups - especially for YOPD & JOPD. We also seem to have a terrible shortage of PD nurses Down Under unless one resides near a major city. Thanks again for the welcome!
  11. G'day all, I'm new here too. From Australia (central Goldfields in Victoria) as we don't have any forums for PD here that I can find. There seem to be a few related national & state websites but no forums so no one to "talk" to. Dx'd with YOPD (<65) last June aged 49 but been symptomatic for many years before that - probably as many as 15/20 with constipation, gait issues and unable to turn in bed etc. I have severely advanced osteoporosis (healing spinal fractures) and was told I would likely age super fast "all over"...that particular Endo Specialist was not kidding!!! I knew something serious was very wrong for a long time but mainly got the brush-off or was misdiagnosed with things such as Lyme-like tick related illness, ME/CFS, Essential Tremor etc. My symptoms really ramped up after carbon monoxide (CO) poisoning over 3 months from a faulty solid fuel heater. My partner was also affected, mainly cardiac & respiratory, it went for my brain and showed the fluid on the CT scan (CO encephalitis) - we're lucky to be alive at all, not many survive to warn about the dangers of CO, it is not just gas appliances! Apparently CO neurotoxins will exacerbate whatever you've got going on, cardiac, neuro etc so we think this is what's happened in my case. The CO poisoning left me with terrible TN (Trigeminal Neuralgia) which I'm on Tegretol (Carbamazepine) every day to control. It helps with my temporal lobe seizures too. I'm "lucky?" number 7 in a family who had a lot of PD on my mother's side but they were all in their late 70's or 80's. Incredibly, PD never occurred to me, my own ignorance thought it was some "oldies" shaking disease...I thought my mystery condition was likely to be MS (brain lesions were on MRI but now vanished apparently) if anything tangible and they would find it one day and apologize for all the years left to rot suffering without any treatment. But it took getting poisoned. This PD dx is still a shock to accept but at least I finally have a name for "it" and a rough idea of what's in store. My gait is most affected, freezing, shuffling and tremors in both hands and neck. Tremors started in the left thumb first. The apathy is a curse. I'm foggy brained a lot. Doc is testing me for early onset dementia. I'm losing word recall, stuttering and feel immensely dumbed down, sometimes can't remember how to make a cup of coffee or what cutlery is for. The short term memory lapses frightens the heck out of me. My eyesight is suffering also. I was a mortician/funeral director, but I've had to "retire" early because of poor health. I have no surviving children of my own (recurrent miscarriages) but am blessed to be a "bonus mom" to my fiancés sons - a full-on 4 yr old and a 12 yr old. I'm having some physio for my balance, loss of arm swing and speech therapy to help with soft voice & swallowing issues. I've been started off on Sifrol ER (Mirapex) which has made a huge improvement to my walking confidence but I think it messes with my emotions somewhat and ramps up migraines. Under medical guidance, I take a "drug holiday" from it every few weeks and then have to resume when symptoms worsen again and so on. Doc increased the strength and added in regular Sifrol 3 times a day but it was too harsh, too soon, so we've gone back down to basics. He say's to stay away from the Levadopa drugs as long as we can because I'll probably only get a 5 year run out of them. I take a betablocker to help control migraines, usually Metropolol. Wish I could be "thrilled" to be here, but I'm sure you're all amazing & brave folks living with this wretched progressive disease and offering each other much needed support and sharing info. I've been lurking and reading your forum posts for about a week and some people are sooo young - only in their twenties...what is going on to cause all this??? So many newly diagnosed every day all over the world, some even in their teens! It's shocking. My part of the world has the highest prevalence of rural PD cases in Victoria - thought the be pesticide induced in the nearby farming communities - that is some really scary stuff! What's more is there no support group for our massive area at all - the nearest is monthly meetings in the regional centres miles away. I may have to do something about that...just don't know if I'm too far gone to cope with it. Well, that is more than enough of an intro! I enjoy gold hunting (metal detecting, fossicking, panning etc) and it's suitable exercise for me - walking very slowly swinging a detector out in the bush, digging every bleepin' target...which more often turns out to be a bullet or a beer bottle top! At least I'm cleaning the environment and occasionally score a wee nugget. PD is not going to rob me of a hobby I love! My fiancé (known as Goldspice), co-owns a gold mine so my current ambition is to learn how to operate the scary looking machinery and perhaps get my licenses so I can be of use. I bet I get to operate the "shaker"! Any other Aussie's (or Kiwi's) on here? If so, Aussie, Aussie, Aussie! You know what to do... Over n' out for now. Pixi