Friday, August 16, 2013

The Acid Test; went to Disneyland

We went to Disneyland for the first week of August; boy, what a test of my wellness and endurance!  I have a handicapped placard now, and the only time we used it was when we parked at Universal Studios on the one day we went there.  The rest of the time we walked.  We walked to the IHOP for breakfast, then to Disneyland and Disney's California Adventure where we walked all day, then we walked back to our hotel at night.  According to Bob's pedometer, we walked an average of 15 miles a day for 6 days!

And through all this, i felt great.  that's the bottom line; I have reached stability.  Thank goodness for medical science.  i can't imagine what hell people went through before we had medications and surgeries for parkinson's.

9 comments:

Anonymous said...

Marian,
I've been working with many specialist and performing many tests trying to get to the bottom of my 'episodes'. I have no idea if it's PD. I found your page and found the posts so encouraging! Last Nov I was diagnosed with Fibromyalgia. The winter months were EXCRUCIATING! Then this April I was not feeling well and started for the kitchen for a snack and woke up on the floor not knowing where I was, if I was dreaming or even in heaven, to be honest. The most frightening experience of my life! These near syncope seem to come every couple of weeks. I know what you mean by feeling normal for a spell and thinking "it was all just in my head" and then it comes back again and I know I'm not crazy! lol
They almost seem cyclic to my mensus. Now that I know what fainting feels like, I just get down when I feel the episode coming. Sometimes I can't help but get down, it's like I can't hold myself. If I don't GET down, I'm going to just colapse. Difficult feeling to explain. If I try to move (even the slightest) during this, I get nausous. I can't speak well. It's like I know I have the answer your question, but I just can't seem to access the information in my brain much less somehow manage to get it to you. Not only is it hard to concentrate on communication, I find myself kinda staring or 'checking out'.
I wonder if this Fibro and these 'fainting' spells aren't releated? Which brings me to PD...?? The physical aspect is the all over body aches, to the bone! Definitely effected by temperature. Cool or cold is NOT good. (Fall is about here and winter will be on the way!) If I get up and do something like dishes, laundry, sweeping, I feel better. But if I spend all day busy, out of the house running errands and the like, the over doing is not good. If I'm sedintary, like at night relaxing before bed, I feel so restless! It's a combination of the pain and the inability to get comfortable and a sense of just NEEDING to move. Hard to explain. Seems Fibro... Then I have these annoying muscle twitches. Can be anywhere and seems to move around my body like a mind of it's own. It might start as a twitch at the rib, then a few minutes later move to my thigh, then up to my shoulder. One day it was a muscle at the fatty part of my thumb near the wrist and it made my whole finger twitch. It's not painful, just annoying.
As for the fainting, I've had a full cardiology work up with 3 cardiologists. I've seen an allergist who thought maybe it was my hormones. I took continuous HRT for 2 months and it seemed to make the symptomes come more frequent and worse. (No longer taking those). I saw an endocrinologist who said it's definitely not my hormones and my adrenal function is normal. They have tested my blood for what seems like everything under the sun! I've had MRIs and an EEG and now this morning I saw my 2nd Neurologist who is thinking Autonomic Neuropathy. She is sending me to UW for a tilt table test and some sort of sweat test as some of the places around my feet, toes and ankles have less feeling and reflex.
It is definitely all about just having a diagnosis at this point. I really don't care what it is, I just want the peace of mind!! I have no idea if this is a PD thing or not. Just a Fibro and ANS thing?? Maybe some of my issues sound familiar or perhaps there is a friend or family member that has similar symptoms? I'm so sick of not knowing!
Thank you for your time,
~C~

Anonymous said...

I thought it might be helpful to know that I'm only 35.
Thanks again,
~C~

Anonymous said...

Reading over my post again, I didn't mention the stiffness. When I have the muscle pain, they also become stiff-like. It's another one that's hard to explain. It's difficult to get up or sit down. Walking is weird. I feel like I walk like a stick figure. As if I was made of sticks and rods rather than bones and joints. Instead of a natural gliding stride and motion of my arms and legs, its more like lack of ROM and I sway side to side. Like my muscles are too tight and won't let my joints bend. That's the best I can describe it.
Thank you,
~C~

Marian said...

Wow,C, you really have a lot on your plate. I hope the EEG you got will be used to look for seizures among other things? those fainting or almost fainting incidents could be partial seizures. I sure hope you get a diagnosis soon; i think that's the worst part, don't you? The muscle stiffness part sounds like PD to me, it could also be other things. Until they have a label for whatever you have, it's a little difficult to deal with it and get on with your life. Of course, you could have more than one condition complicating things; I have a friend who has Parkinson's, epilepsy AND Rheumatoid Arthritis. In the 6 years that i've known her, she's been in an almost constant state of being diagnosed. in any event, Keep me informed, o.k.?

Anonymous said...

Wow 6 years?! What stamina and endurance! We certainly have to be our primary advocate and keep searching for answers.
The EEG I did came back as normal. Everything so far has. It's very frustrating. I have the tilt table test next week. I pray this is the one to provide the answers! If not, I try not to get discouraged, it's just one more thing to help us go in the right direction. =)Yes I'll check back and let you know how the tilt table goes.
Thank you for your compassion and warmth. I've never left a comment on anything like this before. I was inspired by everyone understanding how it feels to go from Dr. to Dr. and test after test and waiting for ages to know that we're not crazy and there IS really something not right! I found this so comforting!
C

Tegan Duff said...

Hey Anonomous, i had to think twice if i actually wrote that and forgot about it till the tilt table part. Im waiting for my MRI results, im 31, i have the same prob with the symptoms being cyclic with my period. I call it the PMS from hell. I walk like the tin man after a salt bath and get slower the more i have to move, then after a period im almost normal. I have the fainting problem too, this is the 3rd year. Natural progesterone has been a help untill this year i had to go off it, i have PID/ scar tissue issues so my hormones arent working properly, tho ive never tried artificial HRT. I have blood clot issues so im not allowed but hearing you say it didnt help kinda gives some releif from wishing i could try it. The mirena IUD is stopping cycles being so heavy which is helping the passing out, i was out for 2 days before now i can stay awake sitting keeping distracted (but cant take the muscle relaxants). Its all a mystery and ive spent 16 years being a guinea pig trying to get to a diagnosis. I suspect parkinsons but as i have post traumatic stress disorder there is alot of assumption the tremors have been psychosomatic. I have my follow up with the Neuro dr in sept. Its an agonising waiting process but at least something is being done now, it had to get pretty bad for anyone to really listen though. I had nerve conduction studies last week which was pretty unpleasant but all results normal so far. Its a maddening process. Just letting you know your not alone, i was glad to read someone else my age is having similar probs. Thankyou for sharing, and thankyou Marian, it gives me hope, however futile, to check here every now and then and i dream of getting enough relief to get on with my hobbies. Its awesome that modern meds have helped you! So glad to hear you got to go to disneyland :)

Marian said...

I swear, every time I start feeling sorry for myself, I hear stories from others that make my journey seem like a walk in the Park. 13 years looking for a diagnosis? Yikes! I was complaining about 3 .

O.K., God, I get it. No more pity parties for a while!

Tegan Duff said...

Marian your such a beautiful soul :)We all deserve compassion, especially for ourselves. and i reckon God gives each of us what we can handle (always pushing that though to make us stronger..) Just thought id check back and leave an update, i was diagnosed with fibromyalgia last week. I dont think it fits but am doing alot of research - there are some interesting connections between PD and FM. About 0.4% of FM sufferers have motor symptoms according to a very recent study - and they are all female. It seems to me a whole new frontier of medicine that is barely emerging from the dark ages. I believe there are no coincidences, there seem to be alot of people sure they have PD with FM diagnosis. Both have some dopamine related problem in the brain, and neither have any known cause or cure. The future is full of possibilities in new research, if i can see that surely someone in the field will... i start on amitriptyline as an experiment soon. For once im glad to be a guinea pig, because i believe, and hope, every test i get through builds statistics that could help us all and future generations. :) <3

Marian said...

Hi Tegan,
It's good to have a diagnosis, so you can get on with it, isn't it? Even when you think the diagnosis may change, until you get one, you're in limbo. I don't know anything about fibromyalgia, but I hope that they can help reduce your symptoms. I suspect that sometime in the future, we'll find that all of these neurological disorders are related; maybe the researchers will find the magic bullet and shoot them all at once!

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.