I'm a newbie. Here's My Story...
 

Well, I have typed my story twice and lost it both times! So this is going to be the really short and sweet version. I am a 33 year old woman living in Washington State. Over the last year I have developed many strange symptoms that left my family practice doctor scratching his head. All tests he has run have come back normal. My symptoms began within months of a hysterectomy. The first things I noticed were: shakiness in my legs when climbing stairs, muscles feel like tight rubberbands that just just won't stretch, no stamina, severe physical fatigue, and jerky movements of my forearms when I bend at the elbow, and shakiness in my hands. My doctor suggested that I see a Rheumatologist and a Neurologist.

The Rheumatologist diagnosed me with fibromyalgia, tendonitis in my left elbow, carpal tunnel in my right hand and something called cogwheel rigidity. He said that cogwheel is most commonly associated with Parkinson's disease. He referred me to a Neurologist.

After the Neurologist examined me, he agreed that I do have cogwheel rigidity. He sent me for an MRI that came back perfectly normal. At that time he said that there was about a 50% chance that I had Young Onset Parkinson's. He asked if I was open to trying medication. He explained that If I respond to the medication, then it is more like 90% that I do have Parkinson's disease. First, I tried Requip. After three weeks I developed a rash and had to stop. He asked if I had noticed any improvements while I was on the medication. I told him that I didn't feel as stiff and achy and that I was able to bend my elbow that I hadn't been able to bend for quite some time. He switched me to Mirapex. I am not as stiff and achy and my elbow can bend. My cogwheel rigidity is starting to smooth out a little and the shakiness in my hands has improved. Long story short, the meds are working. So, I guess it is more like 90% that I do have Parkinson's disease. I have yet to hear the words, "You have Parkinson's disease." It doesn't seem real to me. Last week, they started me on Zelapar for the neuroprotective benefits. It might be possible that I can decrease my Mirapex in about a week. I wouldn't mind that at all. I feel very tired and sick to my stomach, especially the first few days of a new dose. I have resorted to taking a nap every day because otherwise I couldn't function.
I feel bad for my kids who are eight and eleven. It is summer time and they are home and I have to take a nap.

I feel like I have to look at my life differently now. I have been a stay at home mom/child care provider since my kids were born. I always thought that someday I would go back to school and get some sort of job in the medical field. I figured there was always plenty of time for me to do it all. I am not a doom and gloom kind of person, so forgive me for this...I can't help but wonder how long I will be able to function well, and what I should do with my life while I have the time. Don't get me wrong...I know it could be worse. I could have been told that I had a brain tumor and was going to die. I know that I will not DIE of Parkinson's disease. It does, however, steal your physical abilities from you a little bit at a time. That is really hard for me to deal with.

Thanks for letting me share my story. If you have any suggestions on books to read that would be helpful to me, I would love to hear about them.

Evonne
 

You have made a very important step by showing up here. We understand your problems even more than you do and most are willing to help. In a very real sense we are family.

You have a very unusual disease. It will not kill you but it will change your life, some for the better. Pursue your dreams but examine them first. Think in terms of supporting yourself from home eventually. Your post was well written. Maybe you could become a medical writer, for example.

Read the various threads to learn what we are trying. What works. The dangers. Mirapex is not without risk, for instance.

But the number one rule is to reduce stress in your life in every way you can think of. Given your symptoms, exercise, yoga, tai chi. Self-discipline is hard and just gets harder, so start now.

And hang around here. You'll learn a lot. -Rick

Welcome Evonne
 

I was a similar age and had a similar lifestyle that you have when diagnosed and that was 15 yrs ago Evonne.
My advice now? Sounds vain but I wish I'd met me 15 yrs ago so I could say "really it's not so bad do this, don't do that etc etc"
Bottom line is my life as a PWP is quite normal now really thanks to advances in medicine or more specifically DBS, I'm on practically no drugs now and can do just about anything again that I could do 15 yrs previously.
Be careful with all the drugs that your neuro prescribes to treat PD as you can (it doesn't always happen though) do things like get paranoid on them, develop delusions of grandeur eg think you're great at something you weren't before, have increased libido, get obsessive, blah blah.
Levodopa or more precisely Sinemet or Madopar will definitely help your symptoms and (for me anyway) was less likely to be the culprit for out of character behaviour.
No books I can recommend really, perhaps others can.
Lee

A book
 

"Parkinson's Disease - the Way Forward" edited by Dr. Geofrey Leader and Lucille Leader, 2001

300 pgs., 27 chapters, most authored by an authority in the particular subjects ranging from Pharmacological Treatment to Optimizing Function by Nutritional Manipulation to Liver Detox to A Patient's Point of View.

The Leaders run a clinic in London. She is a nutritionist and he is a world class anathesioloist.
http://www.amazon.com/Parkinsons-Dis...4961849&sr=8-1

Welcome again, Evonne!
 

Joining this group can make a huge positive difference in your life. Keep active and concentrate on shedding stress. Inactivity, depression and stress are your mortal enemies!

Although it may seem strange at your age, you would be well advised to explore buying long term care insurance BEFORE you are officially diagnosed. The insurance companies must not know about any possible Parkinson's diagnosis, or they will refuse to insure you. This may seem harsh, but it may well be one of the most important things that you can do for your family. One of our long-time members, Ol'CS, is almost certain to give you the same advice.

Regarding medication choices, although I am not young onset (diagnosed in2001,at age 63) I think you may find that good ol' Sinemet is the least troublesome, most effective med, along with "helpers" like amantadine.

For the last 10 or so years, treatment with the dopamine agonists like Requip and Mirapex have been touted as superior to Sinemet in treatment of early stages of Parkinson's because of concerns that beginning with Sinemet caused its efficacy to be lost and undesirable diskinetic side effects to occur earlier in the disease process. More recent thinking among top movement disorder neurologists is that the l-dopa/carbidopa combination in Sinemet, in addition to producing superior symptom relief, does NOT cause earlier development of dyskinesia by accelerating the neurodegenerative process that underlies Parkinson's. You must consult your own physicians about any changes in your treatment, however.

My own neurologist, who is head of the neurology department in the local school of medicine, is convinced that the pharmaceutical companies have been pushing the dopamine agonists mostly from financial motivations because the Sinemet formulation is no longer patent protected rather than any real superiority in PD treatment.

Wishing you the best,
Robert

Welcome Evonne
 

Sorry to hear that you have this disease and the treatment you are taking is affecting your time with your family. Way back when i was first diagnosed I was started on Requip then Mirapex. Both of these drugs did very little for my PD symptoms. However, they did make me sleep. So much in fact that I completely lost 6 months before we could get them stopped. While they may be neuroprotective, I simply could not afford to sleep all the time with kids and a full time job that required me to be sharp and mentally focused. I was started on Sinemet and got my life back. That was 10 years ago. Yes, We have had to strengthen the dosage fom time to time but Sinemet still is working for me.
Reduce stess, exercise, and join a PD support group are the best pieces of advise I can give you.

GregD

Hello Evonne,

Welcome to the PD forum on Neurotalk! I'm so sorry to hear that you have this dreaded 'disease'. I agree with the others here. Try to remain as stress free as possible, join a support group, and get as much exercise as you can.

I agree with you on taking a different look at things. For me I'm out doing things I never thought of doing before like severe storm chasing, for example. I also don't take anything for granted anymore and try to maximize my enjoment of everything I do.

As far as careers go, you still have a long road ahead. I'm going to school right now. In fact I'm doing it online, which does eliminate some of the stress like getting to classes on time since I still work full-time. The thing is, you need to continue your life as you normally would, but scale it back. There's no reason not to think that can't do anything; always think that you can and will. (I'm the last one to talk, by the way, on this). In other words, don't give up fighting and doing- ever - for as long as you can.

Right now the only thing that gets me now is fatigue. My doctor has balanced my Sinemet dosages so I have the best mobility in perhaps 6 years. Now if this little piece of the puzzle could be found... I'd be in 7th heaven.

Please be very careful of the Mirapex. There are some dangerous side-effects with it. That stuff did nothing for me, but make me very tired and very sick to my stomach. I ended up stopping it in favor of the Sinemet, and Amantadine which works wonders.

John

John! You've been self-medicating again!
 

I don't know if you're a "Frasier" fan or not, but that was Nils's classic line. Explanation to follow- :-)

Hi Evonne, I also was diagnosed when I was 31 (now 57). Joining this forum was probably one of the best things you could do, I havent been a member of this particular forum for long, however, I have know some of the members from other forums for several years. I have found them to be a wealth of information, the people here know the symptoms and understand how you feel. PD is a very strange disease and the symptoms as well as severity vary from person to person as well as treatment, its like it has a mind of its own. For me it progressed very slowly the first approx. 15 years, but then progressed very rapidly. Thanks to DBS 7 years ago I regained some of what I lost. I suggest you find a neurologist who specializes in movement disorders, MDS (movement disorder specialist). Since you live in Washington I recommend the Booth Gardner Parkinsons Care Center in Kirkland, I realize it is a ways from Cheney but I think the trip will be worth it. I have been going there for almost 10 years and cant say enough about how they have helped me.
Even though it is difficult to do at times, maintaining a positve attitude is a must. PD is a degenative, progressive disease but with all the advancements it treatments life can still be good. Good luck and God Bless. evergreenhealthcare.org/neurosciences/parkinson/default.htm

Welcome~~
 

Dear Evonne,

http://dl3.glitter-graphics.net/pub/...bw1v51uzfa.jpg

Welcome to the PDNeurotalk Forum...

here is a link to a great book -

http://neurotalk.psychcentral.com/thread48707.html
about the author -
Norman Doidge, M.D., is a psychiatrist, psychoanalyst, researcher, author, essayist and poet. He is on the Research Faculty at the Columbia University Center for Psychoanalytic Training and Research, in New York, and the University of Toronto’s Department of Psychiatry. A native of Toronto, he divides his time between Toronto and New York.

Early Accomplishments
After winning the E.J. Pratt Prize for Poetry at age 19, Doidge won early recognition from the literary critic Northrop Frye, who wrote that his work was “really remarkable... haunting and memorable.” At the University of Toronto, he studied classics and philosophy, and graduated with high distinction, then earned his medical degree. In New York, he simultaneously completed psychiatric and psychoanalytic training at the Columbia University Department of Psychiatry, followed by two years as a Columbia-National Institute of Mental Health Research Fellow, and another year as a Clinical Fellow in Psychiatry at Columbia.

In 1994, Doidge won The Canadian Broadcasting Corporation/Saturday Night Literary Award, the most important award for an unpublished work in Canada, for his personal memoir, “The Suit.” He became editor-in-chief of Books in Canada—The Canadian Review of Books from 1995 to 1998 and, from 1998 to 2001, a newspaper columnist, writing “On Human Nature” in the National Post.

continue →
--------------------------------------------------------------------------------
Stories of Personal Triumph from the Frontiers of Brain Science
...Dr. Doidge explores the profound implications of the changing brain for understanding the mysteries of love, sexual attraction, taste, culture and education...

learn more about the book → go to above link