Hi Sophie,

I have been wanting to say 'hello' and encourage you in your daily struggles and hopes for the future, but have just been reading the posts on here for a while.
I also have a movement disorder, Parkinson's disease. I remember when I first noticed a slight tremor when I was about 34 yrs old. That was over 9 yrs ago, and since that first tremor, I can remember having some other not-so-obvious symptoms that started in my 20's.
I feel I can relate to you in that I also consider myself a little weird and philisofical. I simply call this being "quirky". In the dictionary it is defined as:

Adj. 1. quirky - informal terms; strikingly unconventional
far-out, offbeat, way-out, kinky
unconventional - not conventional or conformist; "unconventional life styles"

I like to think I am a non-conformist, but off-beat probably defines me better.

The reason I wanted to reply to your post was to encourage you to not give up on your plans, hopes, and ideas for the future. Hold on to them and if you have to, take baby steps towards those plans. This disorder you have might be hard to live with and even limit your abilities and mobility, but you can work around these challenges within reason. You can still accomplish what you set out to do 5 years ago. Don't give up on your dreams. Sometimes, when it gets rough, hope is the only thing we can cling to. So, have hope in a bright future and keep making plans.


My best to you,
Tonya

Hi Tonya,

Thank you for your support. I don't give up hope, but I do try to be realistic. I don't want to live every day with my mind in the future instat of today.
My doctors have told me I won't recover and I don't have to expect to go back to work again.

But as you can read in my blog; sophiebrain.wordpress.com, There is hope now. I'm on parkinson medication, but the doctors don't understand why it works. It they can prove I have a dopamine problem it will be easier for me to get new and more medication. Now I'm on a very low dosis, because they don't like experimenting. But maybe in a few months.....

I would like a personal question, if thats not a problem. I seen you have childeren. I'm told that parkinson medication and having childeren is not good for the unborn child. Where you of you medication while you where pregant? I don't have plan to get a child myself (first I have to find myself a husband ). But I get more and more the feeling that that door is closing for me.

Bye Sophie

Hi Sophie,

I do understand and admire your attitude about being realistic and not concentrating on the future. I read a lot of your blog, and have a better understanding of what you are experiencing. If the Parkinson's meds seem to be working, then it seems likely you have some form of PD. But, the brain is so complex and there's a wide range of neurological diseases/disorders with each person having not exactly the same symptoms as the next. I know from reading many forum posts that no two people are alike in all their symptoms with Parkinson's.

I do hope you will get answers soon. The doctors you have seem to be very attentive and committed to diagnosing you. I feel confident they will get to the bottom of it. Thankfully, there are some very good medications available to help with the symptoms that cause us so much distress.

I don't mind you asking me questions. If I'm able to help in any way, I would be glad to do it. Unfortunately, I can't help you with personal experience regarding pregnancy and PD meds. My second child was 3 years old when I first noticed the tremor in my hand. But, I did some research(as you probably already have) and one website said it wasn't good to take carbidopa/levodopa while pregnant. Mostly, they just advise people to talk to their doctor if trying to become pregnant or are pregnant. I would think that if a person wanted to become pregnant they could ease off the meds. and hopefully do without them until the baby is born. Natural meds/herbs could be taken in place of these, hopefully. All would have to be approved by the doctor, of course. Something to think on until you do find that husband.

Your blog is very good, Sophie. And, it is a good source of information to help those going through the same or similar experiences as you. You have a way with writing and your attitude is amazing. I'll keep checking in on it for new updates. Glad you are here for friendship and help.

Thanks for sharing,
Tonya

Thanks Tonya. I learn a lot from all the people I meet online, now I don't feel so alone anymore. If you have any advice about PD or my blog, just let me know.

Bye Sophie

I'm glad you don't feel like you're all alone in this. There are many out there, and on here, who want to either help or who need that same support.

I'm not so good at giving advice. I would simply say to take one day at a time and if you ever feel you are depressed or are unable to cope with it all, seek help as soon as possible.
But, you seem to have a good, clear head on your shoulders. Keep blogging! That seems to be good therapy. I like your attitude.

Tonya

Hi Sophie sorry for your symptoms and change of mental strength, my daughter has been declining as well with no definate diagnosis by drs. If you have any similiar symptoms please let me know any help from other sufferers would mean alot to put these pieces together hopefully.
My daughter a previous healthy strong vibrant girl started complaining of sudden symptoms she is know 26 and they started when she was 24.
For the past 2 years sudden symptoms she begun and continued to progress and decline with no firm diagnosis. It began with severe fatigue and slight depression suddenly for no reason or change in lifestyle pace. She the complained she started to feel stiffened and slowed movements with troubleintiating movements. Thenstiffness hit her neck and was worse than any stiff neck she ever had during a flu. This lasted for 1 year and half. The drs did blood work extensively including Lyme disease and autoimmune diseases like lupus or MS and MRI of brain neck and spine and ct scans with contrast but all were normal.
Then her vision started to get blurry which she wasn't alarmed because She has had migraine history with vision auras that are genetic from her fathers side but never caused her more then pain during episodesand vision loss. But these vision changes were more doubling with heavy weakened eyelids that were difficult to keep open and focusing problems, this forced her to take a leave from her career. Then the last stage currently was neurological symptoms thatnhave changed her persinality and seems mild dementia is beginning. Having trouble with memory, slowly getting confused in familiar places and struggling to recognize people and objects she is complaining severly about. The drs have reassess and redid the MRI if brain neck and spine and EEG with more blood work and a nueropsch test for memory with reasoning questions, She scored average which to me wasn't impressive for a honor graduate in from ivey league college. She has severe bouts with dizziness making walking very hard because she is very off balance and can't stand straight for long. She has just had a VNG test which the dr said has confirmed dizziness from her brain not her ears or eyes.
I really don't know where to go from here she is now having psychosis it seems. Shes having hallucinations and keeps sayins she doesn't feel real, and having sever nightmares. Her speech is becoming off and personality very isolated. This is a completely different girl and I'm very worried, some type of medical illness the drs have diagnosed yet is causing sever psychosis. We have a movement disorder dr we are going to next and dont know where to go from there. Her career thatnshe worked so hard for took has a huge loss. She has never traveled out of country and need advice on how to get answers from this point. *I'm so confused and discouraged. It seems to have begun with physical symptoms and has developed into deteriorating neurological symptoms. Could a movement disorder cause dementia so young? Thanks