It has been awhile since I last posted. The last time was right after I saw the MDS for the first time. Just to refresh, he was trying to rule out things other than PD that can cause PD like symptoms. He checked me for Thyroiditis, and something called Paraneoplastic Syndrome. I got the results of the tests the other day and the results were all within the normal range. I was especially relieved regarding the Paraneoplastic Syndrome test results...that could have indicated cancer in my body. On another note, my GAD levels were elevated and that can indicate Stiff Person Syndrome. I am still waiting to be scheduled for an EMG and that will give us more of an idea of how my nerves are reacting to the stimuli and I guess that can tell more of a story about what is going on inside of my body.

At this point I am not sure what to think. I am off of all medications right now as per the MDS and I am not doing very well. I am stiff, achy and tremulus. My left elbow seems to be more stiff with each passing day. Another thing that I am experiencing is fasciculations. You know...those annoying little twitches that happen. They happen pretty regularly througout the day although they are most noticeable upon waking in the morning and when I lay own to go to sleep at night. I am not sure if this is a PD thing or if it might be an indicator of another motor neuron disease...ALS. I really think that the EMG will clear alot of this up and I can't wait to get that over with.

Last week I was at home and I injured my knee by bending and twisting the wrong way and I have been off of work since. At first, they told me that I had torn my meniscus, then after the radiologist reviewed the MRI they said that it wasn't torn, just badly bruised and swollen and my tendons were really stretched. NOT GOOD for many reasons!!! I have only been working at the hospital for a couple of weeks and I am still on probation. If I can't return by Thursday, I will lose my job...or as they put it have to resign and reapply at a later time. I am seriously beginning to question whether or not I will be able to perform the duties of this Nursing Assistant job. It is very physical and I am a physical train wreck right now...no doubt. I may well be forced to accept that it is probably not a good idea to continue on with a job that will cause me more physical wear and tear on my body. I lift people squat and bend all of the time and I think that really contributed to my knee problem....although the final injury occurred at home. I am frustrated by all of this because I feel a responsibility to help provide for my family because we can't make it on just my husbands income. I need to do something...I can't just give up, but I don't know what else I can do or where to even begin. My husband seems to think that I could qualify for disability but I don't know how that works. I am only 33 years old I find it upsetting to even think about disability at this point in my life.

Through all of this I have been on another emotional roller coaster ride. Some of it is probably is related to the fact that I am off of the Mirapex so my "fake" dopamine is gone and some of the positive feelings I had are gone right along with it! On the positive side...it is SO nice to have ankles again! I just feel like I am at another crossroads in my life and I don't know where to go next. It seems like the past two years of my life have just been one trial after another and I am ready to have some peace in my life...I am ready NOW!!! I just wish I could get some clear sign from God about what I should do next. I think he is still trying to teach me to trust more in him and to be more patient. I just don't know HOW to do that more than I already have. I am about half way through the book "The Shack" and I am finding that helpful.

Well, that is all I have to update on so far...and that was quite an update. I guess I am just a wordy type of person! Thanks to all of you who take the time to read my posts and comment on them offering support. You guys are awesome!

dear evvone,
you have been wearing yourself out?? one large suggestion mirapex was my "insane assylum drug" can you research how horrid it is? do you have fuzzy thinking sometimes, or do you feel obessive compulsive? research links
http://www.drugs.com/cons/mirapex.html
http://www.associatedcontent.com/art...ce.html?cat=71

A few thoughts Evonne..First of all, good to hear from you..Second, I have been with Harley for almost 2 months taking care of her.. Ive lost about 20 lbs, that I desprerately needed to lose, and I am strong and doing very well with symptoms, and I attribute that to being active in tending to her needs during daily intervals when she cannot walk, and/or move very well..My 2 cents for what its worth..I think being a care partner is great physical excercise, as well as mentally and emotionally rewarding..Gotta be careful with the back though..Ive never moved people around before, but thank God she is only 5' 2" and lightweight..I can see where moving heavier folks around would require some expertice

Evonne-
It doesn't seem like a good time to be off all meds- when you are working and still on probation. I would try to go back to work- get a brace for your knee and take Mirapex if you have to. I don't think you are ready to apply for disability yet, from what I've read of your story. Just try to be more careful with the lifting.

When is your next appointment with the MDS? Why hasn't the EMG been scheduled yet? Did he say how long he wanted you to stay off meds? Mirapex worked great for me when I was first diagnosed and allowed me to do things I couldn't do otherwise.

I went to a prominent MDS who told me there was nothing wrong with me. He was very upsetting. I was dxed with Parkinson's about 6 years later. No, my symptoms did not appear to be Parkinson's at the time I saw the MDS, but there was something neurologically wrong. It didn't become obvious that it was Parkinson's until later when I started having difficulty getting up from a chair and developed a tremor. I took Neurontin during the time I was undxed. If the MDS does not want you taking a Parkinson's med, maybe he would prescribe Neurontin for you so that you can work.

CTenaLouise,

I did have some issues while taking Mirapex. Mainly buying things I didn't need, I became more impulsive, I would obsessively clean my house and I also became more anxious and had lower leg swelling. I thought the anxiety was due to my circumstances, but since I have been OFF of the Mirapex I have been less anxious. Also, my legs are no longer swelling up and I actually have ankles again! I wouldn't say that my experience was horrible, but there was definitely room for concern and I don't think that I would take Mirapex again as long as there are other medications out there that would work for me and not cause the symptoms that I was experiencing.

Thanks for sharing your concerns.

Evonne

Steve,

I am so sorry to hear that you and Harley have been going through so much in your lives...but I am so glad that you two are able to be together to weather these storms!

I totally relate to your weight loss...and CONGRATULATIONS on that! I have lost thirty pounds since July and I think that my choice to take control of my relationship with food and increasing my exercise really helped with the weight loss. It is so amazing how much better I feel about myself now that I have shed some extra weight...plus it was fun to go and buy some new clothes!

I really enjoy most aspects of my job. I think that the hardest part is all of the physical stuff combined with the fact that I have eight to twelve patients to take care of every night. It is very demanding and I really don't know if I can or should do it for an extended period of time. I watched my mom wear her body out and now she lives on Morphine. I don't want to wind up like that.

I hope that you and Harley have a good week ahead.

Evonne

Chicory,

If you want to read my response to CTenaLouise above, you will see some of the reasons that my doctor took me off. I think it might also be because of something to with the EMG test as well. Maybe the meds would have skewed the results??? The MDS is also considering the possibility of Stiff Person Syndrome and I would need an entirely different medication for that. When I did call and tell him about how bad I was feeling, he suggested Artane. I did some reading up on that and decided against trying it. I am confused as to why he considered putting me on another PD drug if he doesn't think it is PD, but I really didn't question it.

I have no idea why the EMG hasn't been scheduled yet. I think it has to do with the referral. I called the office of the Neurologist that is supposed to perform the EMG on Friday, but they were closed. I left a message letting them know that I really want to get the ball rolling and get this scheduled. I will call again on Monday.

As far as my knee is concerned, I can't return to work until I am able to perform all of the duties of my job. The doctor has me in a knee immobilizer(mid-thigh to mid-calf) and I am not allowed to bend my knee. I was told to try bearing weight on it so that is what I am doing. Out of curiousity, I did try using a flexible neoprene brace but each time I bend and try to pivot or just step the wrong way my knee gives out. I think I am going to ask to see an orthopedic doctor for a second opinion. Something just doesn't seem right to me.

I am puzzled by all of the different things that are going on in my body, as was my first Neurologist. He didn't have the greatest bedside manner, but I have heard from many doctors that he was a very smart man. It seems that my many different symptoms had him thinking different things. Some symptoms of PD, some symptoms of other things. I feel that the new MDS is also a little perplexed by my symptoms. I do think that he is doing the right thing by trying to rule out other more obvious things first...beginning with the red flags that he found just sitting in my medical chart. He has a very systematical approach and I think that he will get to the bottom of things. I think it is just going to take time and that is what is so difficult. Waiting and feeling poorly. It would not surprise me to find out that I have PD, plus something else. I am trying to leave things in the hands of the doctor's though or I will probably drive myself nuts. Thanks for your concern and advice.

Evonne

I will keep you in my prayers. If you cannot continue with your job, I hope you can find a job that will work for you.

First of all I want to tell you that I will be praying for you and your family. I have so much that comes to mind as I'm sure many of us have. I hope that it is of some encouragement.

- Find doctors who you are comfortable with, give them a chance but be wary. In the end if you aren't okay with them you are already in a position where they aren't helping you. God know we don't need more stressors.

- Find out where you are with work credits from soc security. It doesn't put you at any disadvantage if you inquire, you'll get a statement like every 5 yrs but you want to know how much credit you have NOW. It will also tell you your disability income as well as your total benefit if you have children. This will be in addition to what you get and it will be
approx 1/2 of what you get. Ex: your benefit:1,000.00 mo. and 2 kids = 500.00 additional (each will get 250.00) you will be named custodian of their benefit. This is all saying that you have enough credits and you are disabled.
Why not do this now even if you do go back to work. IT DOESN'T COST ANYTHING TO FIND OUT AND YOU DON'T LOSE ANYTHING.

-meds are a big one, what works for someone else may not work for you. You also may experience differences in how well the med works for you by many factors that will affect it.

It sure sounds like you definitely have a full plate. I do not feel that you should try to go back to work. A nursing asst?!! You are in the middle of a crossroads in your life. The knee injury alone-I'm sure there are those who would say, oh heck with it you gotta tough it out, etc. but I for one don't think that a job is worth it. I'm not saying it's not going to be rosy. If you can comfortably do the job, go ahead. If you can't, don't make this worse. you may in fact end up finding out that later on you can re-apply after you find out that this is not the health crisis that it seems to be, again I don't know. If you can as you say "resign" now and then apply later when you are well, you haven't lost anything. You also haven't placed all this stress on yourself with this going on. If you don't end up going back so what.

Finally, (whew!!) if you qualify on credits for disabilty and this ends up being pd or otherwise, apply ASAP with a lawyer's help. With a lawyer's help. It doesn't cost you anything and if you get turned down, appeal and re-appeal it gets easier as it goes on in the process.

No one says it's going to be easy but there are brighter days ahead.

Sorry it's so !@#$ long.

You have to have worked a number of years at a good paying job to get $1000 a month in disability. I have worked for 30 years, some full time and mostly part time, and I would get less than $700 a month. For someone who is at the beginning of coping with this disease and not yet sure of a dx, I would say it is a good idea to work now, because it will get more difficult to hold a job in the future. I know Evonne was looking forward to being a nurses assistant after being a stay-at-home Mom.

I have a friend who also injured her knee working as a nurses assistant, while going to school to be a registered nurse. She realized she would need a job that would not involve lifting. She now has her R.N. and works in a rehab hospital for people with drug and alcohol addictions. There are other jobs in the nursing and medical fields that do not require lifting, which may be a better choice for Evonne.

I have a degree in elementary education and worked as a sub teacher. I had a couple long term positions that I was not happy with. Fatigue was a major problem. My minor was in music and I now have the perfect job in teaching guitar in my home studio. My mornings are free, I take a nap after lunch, and then teach around 3:30 to 8:30. I have taken Suzuki teacher training which allows me to teach very young children to play guitar.