Tuesday, January 6, 2009

What Does Parkinson's Feel Like?

When I was newly diagnosed, I sure wished that someone could have told me what PD really feels like. I now know that it is different for everyone, and furthermore that a lot of the symptoms are really, really hard to describe. However, I still would have liked to have read or heard more first hand accounts of what it was like. So, I thought I would describe some of my symptoms, in case there's someone out there wondering about it.

Now, I'm in the "honeymoon" phase of treatment. The medications are working GREAT for me, so none of my symptoms are particularly severe. Still, there are symptoms that come and go in different cycles; some within the course of a day, some over days, weeks or months. They are all exacerbated by stress, extremes of heat or cold, and illness of any kind. Here's a partial list:

1.) Fatigue. This is the single most debilitating symptom for me. I'm not talking about sleepiness, here. I'm talking about the feeling that you've spent the day digging ditches. I'm talking about being so tired after doing the dishes that you have to go take a nap. It's not always that bad, thank goodness, but I am always tired. Then there is that feeling of "heaviness" in my arms and legs. Sometimes it feels like gravity has suddenly been turned up, and that when I walk, I'm walking in sand.

2.) Stiffness/Rigidity. This is certainly the most annoying symptom I have. It sometimes feels like I'm slowly being encased in cement or at least heavy plastic. When I'm in bed at night and my meds have worn off, it's particularly bad.

3.) Slowness. This is a very peculiar thing; I go to unscrew the cap of a bottle or deal some cards or something and my fingers simply will not move fast enough. I stare at them and will them to work faster, but nothing happens. Sometimes I actually yell at the offending body part: "hey, you stupid hand, GET MOVING!" It doesn't listen. One of the funniest things that happened to me because of PD is when I tried to teach my grand-niece to juggle. I've always been a pretty good juggler, and it's like riding a bicycle; you never forget how. So, I started juggling and ended up with a beanbag right between the eyes. Tried it again and hit myself in the nose. Oh well; if juggling is the one thing I simply can't do, it could be worse!

4.) Anxiety. I am often on the verge of panic in crowds nowadays. I just can't stand it. I have to repeat over and over to myself that it's o.k.; remember to breathe; no one is going to hurt you.

5.) Restlessness. I can't sit still very long. I get this weird feeling in my legs and sometimes in the rest of my body and I just HAVE to move. That's why I now get up and take a walk a couple of times a day while I'm at work.

6.) Insomnia. I actually am kind of enjoying this one, surprisingly. All my life, I have NOT been a morning person. It used to take me hours to get going, and on the weekends I slept until 11:00 or 12:00. Now, I wake up fully and immediately sometime between 3:00 and 5:00 a.m. every day. I get a lot more time to myself, and I love the quiet mornings. This has limits, of course; I take Ambien when I've had too little sleep for too many nights.

7.) Cognitive problems. I know that doctors say that this doesn't happen until the late stages of the disease, but I swear my thought processes have suffered. I have much less initiative and confidence at work. My memory is AWFUL. I get confused, particularly about where I am sometimes; I turn a corner in a building I've worked in for 25 years, and I suddenly find myself thinking "Where am I?". Sometimes I look at my husband and think "Who is this handsome guy and why is he in my home?". It passes quickly, but it's scary. I have trouble concentrating; I used to love to read, now it's a chore. I also have trouble with parallel processing; I can't do more than one thing at a time. All of this might just be normal aging stuff, though, or perhaps menopause stuff.

8.) Tremor. I almost forgot about this one, because it's the symptom that bothers me least, even though it was the straw that broke the camel's back and brought me to the neurologist in the first place. Mine started in the fingers of my left hand, and it was NOT the classic "pill rolling" tremor at first. It is now, though.

There are many more, but these are the major ones for me. As I said, though, my symptoms are mild. As time goes by, I will post updates and add to the list, I suppose.

There are also a lot of things that I've GAINED because of PD though! I will address those in another post. I need to go make dinner now!

54 comments:

I am btrflynana... said...

yet through it all my sweet friend you always smile so pretty and are so positive! Keep hanging in there and fighting the fight!! Love ya always...B'nana

Joe said...

Great post! I was diagnosed with young onset Parkinson's almost 5 years ago, and you hit the nail on the head, describing things that are oh so familiar...

And, i don't care what your neurologist says about the memory problems - many people with PD experience it. Some of them start early, some start later in the disease. We call it the "brain fog" - the thoughts are there, but just slightly out of reach. It's like trying to make out a dark form in the distance on a foggy morning...

Good luck to you on your journey

Meg said...

Hi there! I came across this blog by chance and I really think it could be a great resource for me: my mother was diagnosed with early onset Parkinson's last September (we're almost at our one-year anniversary) and it's been increadibly jarring for my family as she has slowed down a lot in the last year. However, it's forcing us to come together as a family and try to understand this disease and new ways to support her. Somehow, hearing you describe the symptoms actually makes this LESS scary b/c we know it's "normal" for her to feel this way and it reminds us to give her the extra minute she needs, etc. to accomplish something.
Please continue to post, I am blessed by your blog. Like B'nana said, keep fighting the fight; people who don't even know you are proud of you (like me). God bless!!!

Marian said...

Thanks, folks! I wrote this because it's the kind of thing I would have liked to have seen when I was first diagnosed. I'm going to post more as the symptoms change.

Meg: I hope your mom does well on this journey. I think it's wonderful that you have taken such an interest and are being so supportive of her. Believe me; the support of family and friends is SO important for PD patients. I can't imagine what I'd do without it.

Hal said...

Would you describe the tremors a little more. I was curious about their duration, how often, and how fast did the fingers move.

Marian said...

Hi Hal,

About the tremors; with the usual caveat about symptoms being different for everyone, I'll try to describe what it was like for me. At first, I noticed it when I was typing. I had a lot of extra "a", "s" and "d" characters. The tremor was pretty fast (maybe 5 - 10 per second), and soon I found that it happened when my hand was just lying palm-up in my lap or on the desk. It was as though the fingers of the hand were trying to open and close rapidly, but failing. As time went by, the frequency dropped; I'd estimate about to 3 to 5 Hertz and I found that sometimes my thumb and index finger looked like they were working at "rolling" something between them. This is what they call the "pill rolling" tremor. I don't have that much trouble with tremor, in general. It only happens when my hands are in a certain position, or I'm off my meds or tired or all three. I don't know about duration, because I usually stop it by changing hand position or stopping whatever I was doing. I notice it most often when I'm walking with my hands at my sides, or in the evening when I'm off my meds and trying to type or do crochet or something like that.

I hope this helps...

Marian

Anonymous said...

I found your blog extremely helpful, though I have not yet received a diagnosis of Parkinson's. Not that I want one, mind you,but it would be a relief to have an explanation for so many quirky things going on with me!

I am 53 in March, and this past year I feel I have aged 20 years. My mind is foggy and scattered, my memory is unpredictable, my balance is uncertain, and my nerves are sometimes quite jangly!

For a couple of years now I've noticed that I have an inordinate amount of saliva building up when I sing, and it makes holding notes quite challenging. I gave up jewelry making about 3 years ago because of my hands trembling.

It wasn't until after my brother went through a sudden and lengthy illness, and passing, that I noticed all of my symptoms worsening. I thought it was due to the stress and trauma of the grief experience. But I'm not coming back, if you know what I mean.

Even typing this is a constant battle, as I make a million errors that need correcting.

anyway, I'm not looking for sympathy, but I sure could use some understanding and support. I haven't told my family my suspicions yet, since they are all still grieving the loss of my brother.

thanks for listening!

Marian said...

To my anonymous friend,

Sounds like you're one of us, to me. I sure hope that you can get yourself to a neurologist soon, and get whatever-it-is diagnosed so that you can get on with your life. I wouldn't wish Parkinson's on anyone, but believe me, it's much better than some of the alternatives.

Hopefully, the medical folks can help you out and maybe you'll be able to make your jewelry again before too long! Sometimes, it takes a while to get the medications and other treatments adjusted just right (it took about 3 years for me), but when that happens, you'll be amazed at how much better you feel.

My thoughts and prayers are with you!

Hugs,
Marian

Anonymous said...

Hi Marian,

Don't worry. I too is having the same problem. But i have found a alternative medicine (not Allopathy) which is really useful. Not only that i have lot of info to share with parkinson sufferers which i promise that will give hope and change the way they look up the disease. If it is really parkinson, then i have the real solution for that.

Suresh

Bob said...

Marian,
I would just like to say thank you for being thoughtful enough to create this post.

It came up when I searched for "What are tremors like?"

Your words are so much easier to read than the more alarmist blogs I have run into thus far.

I have not been diagnosed with anything, but have had several of the symptoms you describe - just to lesser degrees so far.

My hand shakes every day or two - from just a tremor, to the point where my body starts to shake with it, then some days with nothing.

All I have been looking for is someone to tell me - is this "coming and going" the way this sometimes works? Or, once you start feeling symptoms, are they constant?

I know that everyone has different characteristics, but it would be nice to know if others see this the same way at all? Did your symptoms come and go in the early stages?

To be honest, I am not afraid of being diagnosed with anything - I would just like to be diagnosed with something, so I can move on.

Your description of feeling tired like you'd been digging ditches all day was perfect. And being exhausted after doing the dishes - exactly.

I am lucky to have a very concerned and supportive wife who does not think I'm going crazy. Sometimes I feel like I am. Your entry has confirmed that I am not.

I don't know if you have time to respond to this - and having not commented on a blog before - not sure if you can, but I'd be curious if your symptoms included cramped toes and calves, a heavy feeling in your legs, and if your hand tremors were ever the whole hand shaking?

I don't know if you will see this, or if you'll be able to respond. If not, don't worry - thank you for your entry, and your blog. There is something about it that brings me peace. Thank you.

P.S. How great that you play the Ukelele! I play the Tuba. Love to jamb sometime - might be an interesting sound.

Marian said...

Hi Bob; Sorry I didn't respond right away. I was on vacation in Hawaii for a week. Thanks so much for your kind words!

In response to your question about symptoms coming and going, all I can say is "ain't it the truth?". Sometimes I have tremors, then after a few weeks or maybe days, they fade away to be replaced with muscle rigidity and tension or stiffness or (name your symptom here), then THAT slowly fades away and the tremor comes back, but somewhere else maybe. It seems a never ending cycle. Thank goodness for medication.

Your description of "heaviness" in your legs is very apt; that's exactly what it feels like to me sometimes. In fact early on, it was the most difficult symptom for me to deal with. Now, either the medication does a great job on it, or I've just gotten used to it, one or the other (maybe a little of both). Also, I've noticed that when I have tremors, the tremor in my fingers has spread to the whole hand. Actually, both hands, both legs and various sections in between. Once the meds kick in, the tremors eventually go away, though.

Muscle cramps: you betcha! Regular cramps in my feet and calves, just like the ones we all get from time to time, just more often. I also have a problem with dystonia in my left foot. Dystonia is kind of like a mega-cramp; your muscles twist painfully into positions that they shouldn't be in, and there's little you can do to stop it.

Fortunately, none of these things happen all the time, and when they do, they are very manageable. So far, so good!

I know what you mean about the diagnosis. The hardest part is not knowing. When the doctor finally told me I had Parkinson's, my first reaction (after the shock wore off) was relief. At least I knew what to do, and what my choices were, and I could go on with my life.

I sure hope things work out for you, and you are able to keep doing everything you like to do, especially playing that Tuba! I wonder if anyone has written any duets for Tuba and ukulele? Can you imagine what that would sound like?

Bob said...

Thank you Marian for the reply. No problem on not responding sooner. I read a little about your trip to Hawaii - sounded great. Also good to see that you are taking full advantage of everything life has to offer you, and that you are not letting PD rule.

I appreciate your confirmation of the symptoms I was asking about. There were times when I would have such bad days, and then a few days later, feeling nearly at 100%. It was on those days that I would wonder: Am I imagining all of this? Did it go away? Was it just anxiety? Ahhh. Only to have things come back.

One thing that I am learning and deciding is that whatever I am dealing with will not keep me from doing what I want to do. Of course, I need to take the break to let some symptoms subside at times, but I'm realizing that often - if I get up and move, things improve a bit. Perhaps it is because I am somewhat distracted by my tasks.

Anyway - if you don't mind, I will ask one more question. Do you recall in your early days if you felt like the tremors were almost internal. Sometimes, I feel the vibrations in my right forearm, but don't really see the tremor until I start to try to move my arm more. Sometimes this will be when I am waking up - my arm feels like it's energized almost. Usually later that day I will see the hand shaking at some point, but I feel like the vibration is sort of "ever present".

Great pictures from your trip. I hope to take a similar one someday. London and Scotland are on my list first though. Any Peru.

Have a good week.

Bob

P.S. Here's a tuba ukelele duet link - these guys are funny. Who would have thought.

http://www.youtube.com/watch?v=1OIiI6OGniM&feature=related

Marian said...

Bob,
First off ROFL!!!! Thanks for the link! Gotta love these guys: who has the guts to play Elton John on ukulele and tuba and post it on U-Tube? Hysterical! I can think of all kinds of requests.

In answer to the tremor question: YES!! In fact I often have "internal" tremors, especially at night when I'm trying to sleep. I have had them in my chest, arms and/or legs, back of the knee, and just generally "inside" somewhere. Weird sensation, isn't it?

Peru? I hadn't thought of that one; but now that you mention it, I can totally see the attraction. I think if I had to do it over, I would have studied archeology instead of engineering. Oh well; next life, I guess.

Marian said...

Bob,
First off ROFL!!!! Thanks for the link! Gotta love these guys: who has the guts to play Elton John on ukulele and tuba and post it on U-Tube? Hysterical! I can think of all kinds of requests.

In answer to the tremor question: YES!! In fact I often have "internal" tremors, especially at night when I'm trying to sleep. I have had them in my chest, arms and/or legs, back of the knee, and just generally "inside" somewhere. Weird sensation, isn't it?

Peru? I hadn't thought of that one; but now that you mention it, I can totally see the attraction. I think if I had to do it over, I would have studied archeology instead of engineering. Oh well; next life, I guess.

Bob said...

Marian,

Thanks again for your replies to my questions.

It's oddly comforting to know that I'm not going crazy when I say I'm shaking on the inside, but can't see it on the outside.

Your blog, and your responses have been a big help to me. I am in line to get a second opinion at a local movement disorder group here. When I last saw my neuro, I hadn't had any of the shaking, and less of the soft-voice and stiff walking, etc., so I don't think PD even entered his mind. It will be interesting to find out what they think now.

The You-tube guys have a few other songs they've posted too - including Sinead O'Connor "Nothing compares to you". Those guys must still be in college. Curious to know who the older woman is playing the accordian in this one. A mother? A fan who just wanted to get into the act? Tuba, ukelele, and accordian. Only thing missing is a Sitar.

Anyway, I'll stop clogging your blog, but will check back and let you know how things have turned out.

I can't thank you enough for taking the time to respond with your descriptions. It has helped so much to get that kind of detailed confirmation that I'm not alone.

Have a great fall!

Bob

Nat said...

Marian, I was googling around the Internet, to see if there was anyone out there who did what I was thinking about doing, which was describing what Parkinson's felt like. And there you were! You did a great job, and I could relate to much of what you were describing. I am 50 years old and was diagnosed about a year and a half ago. I started thinking about doing this, because I get frustrated that the doctors always do the same "tests" and asked the same questions, and never really ask you how it's affecting your life, in real terms. I think it's important for us to share with one another the things you won't find on PD info websites or won't hear from your doctor. Thanks, and maybe I'll be inspired to start my own blog. Natalie

Anonymous said...

Hi Marian,
Your descriptions are SO helpful. I'm really not going mad. Like some bloggers, I too have not received an official diagnosis, but it's starting to feel only a matter of time. And, I admit, I have postponed my recent appointment with my neurologist.
I do have a question however. Recently, my bad days are really bad. Its hard to walk without a limp and have a cramping in my neck and upper back that seems to have to get worse before it gets better. Anyway, I'm not on any meds right now and I'm so tired. I call it "achy-tired". I've had to drop my work down to 3 days per week. Will meds help me through my work day? I'm a teacher. Should I think about changing jobs? I don't really need advice, but I know there are lots of insights and personal experiences on this topic. Thanks for your blog!
Andrea

Marian said...

Hi Natalie,
Thanks for your kind words. If you do start your own blog, let me know, o.k.? I've found it very therapeutic to share my experience with others.

Hi Andrea,
Sorry it took me so long to get back to you; sometimes it's hard to make time for myself to check this site. Maybe after I retire, right? Anyway, back to your question. Muscle cramps/pain, limping, that "achy tired" feeling: these are all typical gifts from Old Man Parkinson. No one can predict how a person will react to medication, but it sure worked for me. It definitely helped with all the symptoms that you describe. It takes a while to get the meds adjusted properly and you have to be a little patient, but when you get it right, it can be like a miracle. I'm pretty sure I would not be working now without my meds. I hope you get a diagnosis soon, because not knowing is the worst part. Let me know how it goes, ok?

Bob said...

Marian,
It's been quite a while since I last wrote. No tuba playing in a while, but I did have an offer from someone that wanted to sell his to me. Hmmm.

I hope you are doing well. I appreciate your new entries and check back periodically to see what you're up to. You do inspire.

Since September I've seen two neurologist, a neuropsych, my PCP and an endocrinologist. Even checked lymes disease. I can check that one off the list of things I DON'T have. Clear MRI too (yea!). Still no diagnosis - just symptoms. Continued internal trembling - especially at night - continued hand trembling, some twitching of my head, and the latest - trembling of my lower jaw. All in good fun - "stump the doc" is what I call it. My doc team is working hard to continue rule things out. I'm impressed, and yet - impatient and frustrated that it can't be something specific yet.

The one thing I appreciate most - my wife - she is a trooper through all of the sluggish evening where I can't do as much in terms of picking up as I used to, etc. She is a saint.

Anyway - Thank you again for taking the time to set such a great example.

Best Regards,
Bob

energizer-buni said...

Thank you so much for such a great blog. I have been having problems for a year now and have a follow up appointment with the neurologist soon. I have the tremors on the left side only, stiff wrist joint, having trouble writing even my own name, internal tremors that drive me nuts during the night and of course that bone crushing fatigue. I almost cried when I read this blog as I feel like Im going crazy some days and its so good to hear others experiences are the same as mine. One thing I found very interesting is your troubles with typing. I touch type with what used to be a good degree of accuracy and its all turning to custard lately. Its like my fingers can no longer keep up... Im only 45 so it shouldnt be age! I know in myself something is majorly not right.

Marian said...

Hi Energizer-buni,
Thanks for your comment! This is what I hoped for when I started this blog. When I was riding the diagnosis-go-round, the thing I found most helpful; to hear about or read the experiences of others and know that I was not alone.

Typing really can be problem, can't it? Recently, a physical therapist gave me a good tip; she suggested keeping my elbows tucked in to my rib cage and in fact actually kind of resting them on my hip bones. This stabilizes the forearms and hands a little. It probably wouldn't work for everyone, but it sure helped me.

I hope you get some help from the medical powers-that-be soon; the worst part is not knowing, I always think.

-Marian

Anonymous said...

Hello, I was wondering if your symptoms especially early on would improve with rest. Maybe go away completely or just some.

Anonymous said...

Sorry the rest of my sentence didn't appear. I was also wondering if your symptoms would get worse if you exerted your self, like working out or being real active. Also on somedays just sometimes doing things around the house such as mopping or vacuuming which requires a lot of repetitive movement.

Marian said...

Hi,

Yes, symptoms seem to come and go; fade in and fade out. Early on, they sometimes were so well controlled that i started to doubt that I had PD at all. Not any more. It seems like ANY kind of stress, mental or physical make the symptoms worse, so if I overdo it, I'm likely to pay for it, either right away or the next day or two. What it means is that I have to make choices; do I want to go out dancing, or clean the kitchen? Well, bad example; that choice was always easy! some days, I can do both, but I'm just never sure how things will go. That being said, I've found that the RIGHT amount of physical activity can really, really help control the symptoms, and just generally make me feel better.

I guess the trick is just to find what the right level of exercise/physical activity is for you. Of course it takes a little experimenting, and it changes all the time. It's funny, but I always find housework to be so much more exhausting than anything else!

Anonymous said...

I ran across your blog trying to find something that distinguised MS & PD. I did not know that PD symptoms can come and go. My neurologist decided my symptoms were stress related and I took her word for it until the last 2 "episodes", one of which is current. The symptoms are worse and different. I do not have tremors and have read tremors are one of the "for sure" symptoms of PD. I have had 2 of my mom's siblings diagnosed with PD, and she herself had Lou Gehrig's. I have experienced symptoms for years, starting with very mild, short lasting ones in my legs alone. This time I have new ones including 'head jerking' and more frequent and more energetic arm jerking.

Can you or anyone please tell more of the earlier days when there was no diagnosis yet? I see a little of that in a recent post which helps me. After accepting that my symptoms were stress related, I felt stupid that I couldn't control my stress enough to stop ridiculous symptoms. Am I Really making myself do all of these strange things in my body?

Cassie

Anonymous said...

Thank you for taking the time to write this blog. I have not been able to put into words that heavy, tired "shaking on the inside" feeling.

I was recently diagnosed with frozen shoulder While researching possible causes I started to look at Parkinsons because for a long time (before the shoulder went) I have had that "something ain't quite right" feeling.

I have ignored little things that I thought were not related or were related to middle age (loss of some smells, twitching left pinky, numbness in hands and one leg, short term memory problems, clumbsiness).

Your blog gives me reason to believe that I'm not crazy.

~Sherri~

Marian said...

Hi Sherri,

Thanks so much! Your kind words really made my day.

Have you been diagnosed yet? Your symptoms sound very familiar. I like the way you put that: that "something ain't quite right" feeling. Exactly! And of course, if you've been reading about Parkinson's you know that frozen shoulder and loss of sense of smell are 2 largely ignored symptoms which, for some people, can be some of the first signs of Parkinson's.

You're definitely NOT crazy. Don't let anyone (including doctors) convince you that you are; just keep after an answer. I sure hope you get one soon, so you can start feeling better.

-Marian

Anonymous said...

Hi Marian:

Just like everyone else, thank you so much for this blog. I like everyone's explanation of their early symptoms very much, I don't feel alone or a hypochondriac now.

No diagnosis yet, in fact, I just realized I had a problem a few weeks ago. I was very lucky to get into a great neurologist within a few days of realizing something wasn't right. My neurologist spent over an hour and a half with me performing all sorts of neurological tests. The one I really failed at was the toe to heel walk.

I was thinking I might just have had a neurological "cold" because my symptoms just stopped. Then they have started to show up again after one week of no problems.

Please everyone keep up with your posts so we can journey with you.

Roberto

Marian said...

Hi Roberto,
Thanks so much for the encouragement on my blog. Sometimes I think no one's out there...
You are lucky indeed to have found a neurologist who is ready to listen to you so soon. I had the same experience, but I know lots of people who weren't so lucky. I hear all kinds of nightmare stories about doctors who decide beforehand that they know what your problem is, and stop listening. Good luck on our journey, and please drop by again and let me know how things are going, o.k.?

Marian

Anonymous said...

Hi im 37 year old female and had right hand tremors and right leg shakes when holding it in the air.....the tremor in right hand has spread to my fingers and my arm is very weak at times,stress and heat make it worse....i have cramps in right foor all the time and constant burning in it.....when im sitting on coutch itd hard for me to get up cause my muscles and legs are sore,i think the tremor is starting in left hand now....im scared that this parkinsons i go c my nuro in march.....im finding even going out during the day im so tired that i feel like ive had no sleep and muscles just ache and shake

Anonymous said...

Oh forgot to mention ive had the tremors for 4 years and its a resting tremor

Marian said...

Hi Anonymous friend,
I'm glad to hear you're going to see a neuro in March; sounds like something is going on with you for sure. I hope it goes well, and that you get a fast and accurate diagnosis.

Janet said...

Hi Marian. I stumbled across your blog yesterday when I was feeling really bad and googled does anyone ever feel good with Parkinson's. I have had symptoms of pd for about 5 years. It started with excessive amounts of saliva which I noticed and then my dentist commented on it. She suggested changing toothpastes or eliminating certain vitamins to see if anything changed. Six months later at the next checkup she suggested ear nose throat doctor. I still had no other symptoms and she examined me and suggested an MRI. Neurologist said no tumors so next was ENT at medical center, and then gastroenterologist who said no problems and suggested a psychiatrist. I knew something was just not right so I just tried to live with it. In the back of my mind I just kept thinking pd and then I noticed my balance was a little off. Then my handwriting got small and I went back to neurologist who put me on levodopa/carbodopa as a trial. At first I thought it did not help but 3 months later when he suggested coming off I felt so depressed off of it that I got back on it within the month. Plugging along until last year I had a colonoscopy which after not being on meds for 2 days and having cleaned out my system with the liquids you drink I came home and felt like I had the flu for about a week. It scared me and I made an appt at the medical center with pd specialist. He examined me and I had all the classic symptoms but no tremor. I am now on the meds 4 times a day. I get a myeoblock shot in my salivary glands every 4 months, which dries up my mouth. I still can do a 45 minute walk daily but I have bradykinesia and it drives me crazy that I have trouble turning over in the bed. I also have the brain fog and confused thinking. I work part time so that's been ok. I feel so much better on protein. I have struggled with hypoglycemia. I have been going on and on but I was so glad to find your blog and know that there are people out there with similar struggles and victories. I hope to get in a support group but I think I am scared of finding out just how bad this might get. Thanks for letting me vent.

Marian said...

Hi Janet,
Wow! You've been through the mill already, haven't you? Let me get this straight; the Gastroenterologist referred you to the Psychiatrist?? That seems odd right there. I would think that would be something a GP or a Neurologist would be expected to do.
I was interested to hear about your hypoglycemia; I have a pet theory that PD can cause blood sugar regulations problems (I have had trouble with that for years, but whenever I get a blood test, the sugar level is normal, and I feel well again).
Support groups are not for everyone; some people find that seeing patients much further down the road than they are is depressing and frightening. I don't; and I'll tell you why. I find it so uplifting to see these people smile and joke and live their lives even though some can't walk or talk any more. They are soooo brave and patient; every one of them is a hero to me in some way. Even though they're scared and it looks like they are losing their battles, they never give up. They're holding out for a cure, keeping the faith and grabbing all the pleasure they can get out of life. Sorry; this is starting to sound like a cigarette commercial!!! I am such a cheerleader for Parkies, and I JUST LOVE these people!
That being said, no one can be expected to be "up" all the time. We share our defeats as well as our victories, safe in the knowledge that there is a place where it's o.k. to do that.

I hope that you (and anyone else who is in search of help with PD) will find this a safe place share fears and victories; defeat and success, knowing that you are helping others by doing so.

Janet said...

Thanks for answering me. I have felt good now for a straight week and that is uplifting. I have four grandchildren ages 4-8 that I adore keeping. They are my inspiration and I really want to have energy to play freeze tag and kickball and trucks with them. Thank you for refocusing me on the important things in life. Sometimes I need some cheese with my whine. Life is hard but God is good. And so are the blessings He's given me, including a safe place to share some of my thoughts. Hope you have a great week. It's 74 here outside and I love it. Janet

Anonymous said...

Hi there i right side tremors in hand,arm,leg,and foot....but now waking up in middle of night with tremors?????do u kno what this could be

Janet said...

Hi Marian. I recently went on a more recent blog and saw that you had surgery. I did not realize you were having such difficulty and appreciate you answering my comment and uplifting me while you were in the midst of your own trial. You looked beautiful on the boat on valentines and glad you are still dancing. You are an inspiration to all of us and that smile is priceless.

Marian said...

Hi Anonymous,
Tremors at night are unusual for Parkinson's patients, I hear, because Parkinson's symptoms usually stop while you're asleep. Strange. Of course, your brain starts trying to pump out dopamine as soon as you wake up, so maybe if you wake up for some other reason (a medication side effect, for instance) and you are awake for some time, maybe the symptoms start again and you get the impression that the tremors woke you...? I'm just guessing; it's really a question for a neurologist. I hope you are able to get enough sleep!

Hi Janet,
You are so sweet; thank you! I'm not doing so badly, and next week, they turn my implant on. I'm looking forward to that! I really hate this stupid disease and now I'm going to give it a real kick in the rear!!

Anonymous said...

I found this page by typing Parkinsons why do my muscles hurt so bad?
I was 39 when I was diagnosed with PD. I'm now 52. I was in a suicidal state living in my garage about 75% of the time. Only because no one in my family cared enough to try to understand or even get me help. I had to get mad before my wife would take me seriously. two of my kids 29, 24yrs, made comments like at least they had a job and that I sure seemed to be able to turn my problems on and off at will. It has not changed much. We just dont talk about it. You described me to a T. Then add muscle pain that feels like a migraine in my thighs and bicepts. Then the depression is hard to deal with. I am so much more happy when I am away from home and my doctors see it. Then I have nearly choked to death on water and a tiny tiny piece of chocolate. I cant eat without a drink because nearly all I eat gets stuck because I cant swallow right. My stomach is on the fritz. I go every two days and it hurts. sorry squeamish I hope not. Next are my nightmares. Always about war. Fighter jets and cargo aircraft. I retired from the USAF with symptoms but never knew what I had. In the dreams I am in a leadership role and do everything to succed but ultimatly I fail over and over again. Next is the acting out a dream. I have cursed about getting that bast***. Yelling for others to take cover and I run around delivering ammo and food. Then I am told I am no longer needed. Same over and over. But the bad part is when I scream I will swing my arms all over and kick. Even have a demonic voice and then just laugh. I normally lie at my neurology appointments to get out. Because my wife just has no clue. Next appointment is the 4th at 9am. dont know for what. to tell me how much further I have slipped into the sinkhole call PD? Ok I'll go make someone else unhappy.

Anonymous said...

Hello, I have been researching pd, essential temors, med interactions... etc. Trying to make sense of the craziness that's been happening. I joke with my husband I'm falling apart at 35:). Had been having "brain fog" (concentration issues) for sev yrs now (was put on ritalin) & recently started having memory "blanks" for things I've done or seen, words. Also been getting severe calf cramps past sev yrs that have now turned to twitches- that don't hurt unless they occasionally "seize up". Well, now I'm having twitches in arms thumbs. Sometimes I don't see the twitches, I just feel them. They r only when I'm resting & seem to stop when I sleep. Also my hands, back, neck, shoulders & jaw hurt almost all the time- ache type pain. I have knots that never go away in my shoulders & neck. Last night my shoulders started twitching severely, then my legs, then my arms- lasted about 3-4min I guess. After it stopped my right hand was twitching alone- like my father's used to.. He had pd. I realize ppl always ask your advice & I have debated doing the same for sev days, but I keep reading conflicting things on multiple other "medical" sites. I greatly appreciate any nugget u have to share. It's so nice to find an encouraging place for information. Oh I failed to mention the urinary frequency- I have to urinate between 10-15xs a day (2-3 at night). -no infx, just "overactive bladder" & minor inflammation. I see rheumatologist in 3 wks but seems like forever away.
Crazy in OK
Thank you:)

Anonymous said...

I forgot to mention a few things: the crazy insomnia- been on restoril but it seems to wear off after about 4hrs. I used to sleep till noon but I begin to toss & turn just before dawn. I cherish days when I sleep to 8. Also experience slight tingling with pins & needles that started in my heels a few yrs ago (only when lying down). It has since started to spread up the sides of my feet. I feel quite fatigued most days- find myself having to take breaks to rest while doing small things like showering or making dinner... This is a night and day difference from 2 yrs ago. Just looking for any insight- if any of this sounds unfamiliar- or strange? I have always been one who tries to figure things out.... it's the not knowing what is happening that's driving me batty.. I want to solve this puzzle & go in to the specialist as an informed patient.
Blessings to you,
Crazy in OK

Anonymous said...

Thank you for your blog! I hope things are well with you...

I'm interested in how you described your first symptom, the one that took you to the neurologist... your tremor. You describe it as not the classic pill rolling kind...

Would you mind elaborating on that in some detail? So did it only come on for a few seconds at a time? Was it only in one finger, on one hand etc...

It would mean so much to hear from you. Keep well, thanks again!

Rita K said...

God morning,
Yes it is 6:30 am here in Santa Rosa Ca. I was looking for a video to share with my husband on how it feels to have Parkinsons when you came into my life through my ipad. Ben up since 2,yep that seems to be part of this pd thing. Your comments and those of your guests are comforting,reassuring and in man ways I continue to be grateful for every inch of "normal" I can squeeze out of my daily life. I have been diagnosed for 7 years and have several symtoms that I deal with but on a slower, most times less painful path. I don't ave any magic answers but I get afraid tat I am not "doing enough or te right things enough" to keep this honeymoon going. I try..mostly I try not to be a burden ,be up,be grateful,and when I am not strong to accept my husbands help and not feel guilty,lazy, r selfish.
Your blog Eli's. thanks for being here.

Rita K said...

Obviously I should edit better. These self correcting programs are frustrating. Any way, your blog,comments and attitude are very kind and helpful for me.
My offers of support include water aerobics ..helps with my balance and core,see a ob gyn urologist if you have urgency incontinence,they can give you Botox for your bladder,a miracle help for me,and meditating and rest help e with internal tremors.
With gratitude....

Marian said...

Wow, I haven't checked for comments in a long time! Anonymous on April 3: have you considered a support group? I don't know where you live, but there seem to be support groups everywhere. Try Googling. You REALLY need some support; your family seems to be unhelpful.

Crazy in OK: Did you ever get to see you rheumetologist? I know I didn't spell that right, but typing is such a chore for me now. The twitching, pain, fatigue and insomnia sound very familiar to me. Are you planning on seeing a neurologist?

Anonymous on July 24: the tremor I had was very slight and was really only noticeable when i was typing. lots of extra "a" and "s" letters, since it was only in the last 2 fingers of the left hand. I asked the neurologist about it, and he said that some people with PD have no tremor at all, or it develops later.

Rita K: Sounds like you are doing a lot of 'the right things'; your PD honeymoon has lasted a long time. What i hear these days is "exercise, exercise, exercise'. I really need to find an exercise activity that is fun for me.

Anonymous said...

Marian, not sure where to start. Some symptoms I've had for years, such as insomnia, nerve pain in feet & cramping in feet & legs. I finally went to the doctor when the pain in my feet became almost unbearable, (at times), then I started noticing internal tremors, heavy, heavy legs & a problem with balance. My doctor referred me to a neurologist. I've had MRI, ENT tests & tilt table tests. MRI, clear, ENT showed peripheral neuropathy, nothing definitive from tilt table test (other than I had violent shaking in my legs & became violently I'll for about three hours. The neurologist said I'm wired wrong, not helpful. My symptoms have progressed to shaking in my hands, voice, exhaustion, all after lite activity or very stressful situation. My thinking can be very fogging, to the point of causing damage, (I forgot I had turned the water on in the master bathtub, ended up flooding our master bedroom). Other lack of focus, on a bad day, my movements are quite slow. The final clenched, both my mother & her mother had PD, my older sister has essential tremors. I feel I won't get a diagnoses (confirmation) for quite sometime, but truly feel I need help. Thank you so much for your blog, you are the first person to be transparent & a huge comfort. I look forward to hearing from you. Regards, Kathryn

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Elaine- said...

i have been looking everywhere for a subject description of parkinsons... tell me, do symptoms come and go? and do you get symptoms like half of your body feels numb but ALSO hurts and is spasmed and you want to keep pressing on the muscles for them to release? also have you tried 'earthing'... it has helped me... and the tremors, they terrify me and feel awful, they are like a core weakness and shaking, but also some of my muscles just randomly pop and it's an awful feeling... but does this come and go with parkinson's? please advise?

Tracey Glasse said...

Dearest Marion
My name is Tracey and i am waiting for the puppy to be named. my first symptom which came out of the blue was January 1st 2006, i was driving on the highway and discovered how slow i was driving, turning to Scott to tell him that something was wrong, i found that i could not utter a single word... i tried to slap him and found that my hands were stuck to the wheel... i started rocking a little, trying to make sense of what was going on... i was talking to myself, trying to calm myself down... just keep driving, be careful, i had lost all spacial awareness and couldn't do anything about it.
i had to will myself to say a noise... make a noise,,, any noise just do it. after some time i made a noise... good i was saying to myself, now do it again, time went on and i finally said his name. Got his attention and stopped the car with his help. i got out and didnt realise i couldn't walk properly, using the car to guide me to the passenger seat. long story short this took about 2 and a half hours them magically disappeared.
nothing more until i was at work and found it increasingly difficult getting up off the floor without help, a tremor in my finger on my right hand that i dismissed as normal except for the day when my world became so strange to me. My legs and arms became very heavy and tired easily, so much that i couldnt hold them up long enough to was my hair, very stiff getting up in the morning, slurred speech, muscle twitches, balance problems, right side face droop, the list goes on... Its not MS or MG, all these and many more came and went, oh including swallowing difficulties and nocternal breathing problems... that was in 2010 and lasted almost 2 years... well the severity of it anyway... it has never gone away fully, always sitting in the background just waiting to show it ugly head again, and it has, weakness , breathlessness , slurred speech, ongoing eye problems, cognitive problems like using to wrong word in a sentence or not being able to find the right word etc. Now my new GP thinks i have YOPD, and i must say that im still ticking the boxes. i just would like a diagnoses, so i can get some treatment or something... i am 50 this year and have four children and life as i know it is becoming difficult ... thanks for sharing your story.

Anonymous said...

My husband has all the symptoms you have described so I had him stop his meds and I am loading him up on food with amino acids. The first week he felt 100% better but now after 2 weeks of this and no meds he is back to feeling terrible. I found a Parkinson specialist in our town but we have to see his primary care doctor for a referral. He already has seen a neurologist and he was no help at all. I just don't know what to do. He has a mild case and almost no tremors but has everything else. We have no life. He does not want to go out or do anything. He is 16 years older than I am and I have a problem being confined to our home on weekends. Should I put him back on the meds or just wait to see the specialist which could be a month or so? I really need help. Anytime I ask how he feels the answer is always the same. I feel terrible and he is always dizzy.

Anonymous said...

My husband has PD but he doesn't want to take any medicine since it does not cure or slow down the disease..it just stops everyone from seeing the symptoms..or as our Dr said gives him his dignity a little longer!! The meds have so many side effects he doesn't want to fight those too!! Has anyone ever done with out meds at all?? And what happened??

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susan longley said...

Hi Marian my name is Susan I have been to my nuerologist 4 times In the last 2 years here are some of my symptoms I started with internal tremors at night when trying to go to sleep resting tremor in left hand my fingers open and close I have no control over, numbness in legs and feet, cramps in calves at night, problem with blurry vision ,balance problems can not turn fast , sleep problems I am up until 5 am every night, reflex in knee comes and goes , as well as my voice hoarse sounding have had my foot turn in weird positions and issues with my body temp. cold so i take temp and it is 95.8 alot of the times well that is about all the weird thing i can think of I am turning 53 this week thank you

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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.