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ProgressiveB

How many other YOPD people are out there?

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Just wanted to post a follow up on the Glutathione injections.  They have been absolutely amazing for my symptoms and it seems like every time I get a shot it works better and lasts longer.  The weeks I get a shot I am able to half my meds.  They now last about a week (my first shot lasted about a day) and reduce my tremor almost to nothing and help with fine motor and rigidity as well.  Insurance doesn't cover them but they are fairly cheap.  Highly recommend as an alternative treatment!

best wishes,

Lena

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It's awesome to see everyone on here supporting each other, you guys are incredible people.

I'm 21, just diagnosed a few months ago.

A bit early to the party, it seems.

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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 

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Welcome, Pixi! I met several folks from Australia at the World Parkinson's Congress last September. Some have been Facebook friends for many years. If you are on Facebook, you can search for People with Parkinson's from Australia.

 

Dianne

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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! :)

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