Really struggling to know what to do

Hi all.

I've not yet officially been diagnosed with Parkinson's because I've never had the typical symptom of tremor. During my first visits to my neurologists they did the usual "quick" tests to see if I fell over when they pushed me, asked me to walk 10 metres and back as they watched me, tried to find restricted movement in my arms, wrists and legs, etc. In the beginning they said they saw nothing even though I knew there were times when all the signs and symptoms of Parkinson's were beginning to become a part of my everyday life to some degree. I do have balance problems, vision problems, cognitive problems, stiff legs, muscle rigidity, stiff neck, pain, problems with sleep, constipation and so on, and so on but, in the past, they've never been severe enough for the neurolgists to see them while I'm in their office. This all started about 6 - 7 years ago and all of these symptoms are incredibly difficult to deal with now. My twin brother has Parkinson's so did my dad to a lesser degree. So, I know the signs well enough. But because I don't have tremor, all the neurologists I've seen have said either NOT Parkinson's or MAYBE! I've had Datscans which have been interpreted as NOT Parkinson's but I know that around 10% of PWP have negative scans. One of my neurologists says this comes under the context of SWEDD (scans without evidence of dopamine depletion). Either way, I'm not taking any meds but I certainly have a good idea of what intermittent low levels of dopamine do to my brain and body. Cognitively, my brain slows down to a stop at times and I feel like I'm in a stage of dementia. I've seen this endless times in my brother when he's in one of his "off" moments. For me, without any meds, it's very worrying and I'm increasingly worried about Lewy Body Dementia.

Or . . . is this all a part of the anxiety some people experience with Parkinson's.

I know that the following happens every morning. I'm in bed feeling OK (or just tired if I've had a bad night) but I almost always think I'm going to have a decent start to the day. So I get out of bed, get dressed, start to prepare breakfast (everything brain and body- wise working fine) spend about half-an-hour feeling normal before I slowly but surely feel myself mentally and physically "crashing". I begin to lose the ability to think clearly, co-ordination disappears, have trouble speaking co-herently, vision deteriorates (espesially once I've put on my glasses), and I really do feel that any dopamine that's in my brain is being drained away and I can't stop it. If I was on meds, I'm convinced this would be an "off" period. The problem is that this feeling is now with me all day long. Anything I do intellectually and physically knocks me out. Cooking, driving, working in the garden, watching TV, reading, everything I do for the rest of the day I'm doing in a state of what feels to me like dementia. The only time I feel anything like normal is during that first half hour or so just after I've woken up but am still lying in bed. It seems, sometimes, that the physical act of moving around in those first minutes and using my brain to perform mentally is enough to fry my brain and my body.

I'd like to ask if any of you, either now or before you started taking Parkinson's meds had the same symptoms. My neurologists say this could be stress or anxiety and have tried many times in the past to put me on anti-anxiety or anti-depressant meds. But is this more likely to be a Parkinson's issue? Perhaps a Lewy Body issue?

About a year ago, my brother told me he was having the same early-morning issues. This was a long time after I began to have them. He spoke to his Parkinson's nurse who told him to take his meds an hour before getting out of bed and before long, the symptoms pretty much went away.

Any advice would be really appreciated. Thanks.


20 Replies

  • Tremor is not a symptom in 30% of PWP . I don't have tremor but do have PD.

    " My neurologists say this could be stress or anxiety and have tried many times in the past to put me on anti-anxiety or anti-depressant meds. " listen to your Doctor

  • It sounds like you are stressing about it & stress can make you feel really bad, mentally & physically. Have you taken any of the antidepressants they suggested? How many neurologists have you been to? Were any movement disorder specialists? Try doing some intense exercise like boxing, crossfit, strength ttraining, walking or biking & concentrate on that for awhile & see if you feel better. But make sure you talk with your doctor & make sure exercise is ok for you to do. Good luck & keep in touch.

  • I tak my first cocktail of PD meds at 7:30 am, then snugl

    Glenn in bed for an hour before starting my day. It's the most peaceful and restful time of my day.

  • Before my husband was diagnosed with Parkinson's, he constantly had what he called "brain fog." He eventually moved on to different symptoms. Maybe you will too. I have the feeling his thinking processes are slower, but not dementia, he finally gets around to what he wants to remember..

    And medical marijuana calms him nicely.

  • Most symptoms involve some aberration of normal movement, resulting from the garbling of chemical signals between cells that happens when dopamine-producing cells die. Symptoms vary in kind and intensity from person to person and may grow progressively worse over a couple of decades. The common symptoms include:

    A resting tremor, so called because it's a shaking that typically happens when the muscles are relaxed and subsides when the person begins to make an intentional motion. A tremor can affect all parts of the body, but it commonly involves movements of the thumb across the fingers ("pill rolling"), flexion and extension of the arm, and rotating of the forearm. Usually, the tremor is absent during sleep.

    Stiffness or rigidity of the muscles, resulting in decreased ability to move. When a joint of a Parkinson's patient is moved, there is resistance to the movement. "Lead pipe" rigidity is a form of increased tone that is particularly prominent in Parkinson's and can result in muscle stiffness, fatigue, and weakness. "Cogwheel" rigidity occurs when there is also a tremor and is characterized by a "stop and go" effect during a range of motion maneuver.

    A slow shuffling gait and general slowness of movement (bradykinesia)

    Decreased range of facial expression

    Impaired balance

    A reduction in automatic movements, such as blinking, swallowing, arm swing, and facial expression

    The above material is an excerpt I copied from somewhere on the web, wanted to reference cogwheel rigidity. .

    Regards my own experience with diagnosis, was shown by a couple of doctors that I have "Cogwheel Rigidity". It is in the background, don't feel the tremor (it is very light), unless some one externally palpitates my elbow. Also had the bradykinesa, but that was not distinguishing, as was also associated with old knee injury .

    And further my perspective. (Note I am not a doctor, but relating my thoughts and experience). Regards Lewy Bodies, these are cell organelles, have definite structures (external membranes). They are correlated with some dementias, which means are both present at the same time. This does not mean are causally related.

    I am sure that stress is a major problem with PD. Animal studies make this clear.

    Stress causes cascades of Cortisol to be release. Benson's Relaxation Technique is very useful. to deal with stress in one's bpdy . Google the technique.

    Also, I am convinced that the Placebo is a powerful tool as there is a mind connection..

    Further believe that the Necobo effect (do harm) exists. Follows that one's expectation

    is associated with likelihood of outcomes. I vote for placebo over necobo in my life.


  • I was in the same situation as you. About 8 years ago I suddenly found that I had great difficulty swiming (in fact I still swim like a stone) . They don't like it if they can't pigeon-hole you. With me I too had no tremour and unreponsive to the drugs I had 2 scans thay did not show any signs of anything but a DATscan did show bilateral signs of dopamine depleation so i had a diagnosis of atypical parkinsons. A year ago they changed it to atypical psp because he saw signs of upwade glaze hesitation. since then i found out that i probably have 'pure Akinesia with fog' my neuro agrees with me on this. It has been a long journey but apart from a few falls I feel the same I did 8 years ago. please be careful of the meds they want togive you if you feel no benifit then don't them.

  • Stop worrying immediately. Stress is bad for every part of your brain and body. There is a tilt point to when you are diagnosed with PD and you haven't reached it. If you, by any chance do have PD there is no rush to be diagnosed. It is not cancer or the flu or an infection because none of the meds being prescribed currently have any protective or curative goal, they just sometimes address symptoms. You will know if you have PD.

  • There are two different basic types of PD, tremor dominate and PIGD; postural instability gait disorder. I have the latter which is very similar to your description of symptoms. I have had the diagnosis from 2002 and started Azilect and then c-l dopa. I worked till 09 but had to retire due to exhaustion

    One year ago I underwent DBS targeting the Globus pallidus internus which gave me an excellent improvement by decreasing my dystonias and dyskinesias, sleep and anxiety issues. I gained 30 lbs to a normal weight of 160 lbs.

    Despite the success I'm still slowly declining which is the nature of the disease. I still try to exercise, meditate and keep a regular sleep pattern as much as possible.

  • I agree with Donny, I'd try the anti depressant meds

  • I was told by my movement disorder specialist and read and personally experienced that when a patient is given Sinemet the movement symptoms are usually relieved. That would be balance, gait and tremor.

    You do have the balance and gait(stiffness)issues. Patients can also have internal tremors. They may not feel like an external tremor, just kind of uncomfortably creepy.

    Perhaps you could ask your neurologist if he would consider a trial period on the above med-it needs to be Sinemet(or generic). If some of the motor symptoms and/or even some oddball feelings one can't quite put a name to are relieved one would be diagnosed with PD.

    I don't have a particular research paper at hand to give you a link, but if you can bring in a couple of articles it might help rule out PD.

  • That's interesting that you mention and internal tremor, that's what I seem to have, definitely "uncomfortably creepy", I had described it as an anxious feeling but I think your description is better. I have assumed that I have PIGD but now that I have this internal tremor I'm not sure?

  • A few weeks ago my doctor suggested I try Madopar for three weeks (which I think is the normal amount of time). I tried it for five days and it sedated me so much and made my balance issues so much worse that he told me to stop taking it. Five days is obviously nowhere near long enough to see if it was going to make a difference but it would have been very hard for me to carry on without being properly monitored.

  • I think 5 days would be long enough to know whether it was going to make a difference. I can't see any doctor diagnosing you with Parkinsons with a lack of a positive response to sinimet and a negative DAT scan.

    Time to look n another direction I suspect.

  • PD will take its course if you have it, why suffer 2 times. Once while worrying and once if it happens. My wife currently see's a neurologist and a psychiatrist for her PD. I would suggest a movement disorder psychiatrist who could better diagnose your issues or conditions. PD meds do not cure they just control and come with their own side effects. Exercise would be your best med.

  • My question: Have you seen a neurologist that specializes in movement disorders?

    That is so important. I don't have tremors unless I am stressed. There could be that it something else, but to put your mind at ease see a movement specialist. If you have ask for a second opinion to find out what is happening.

    Please take care.

  • Thanks.

    I've not seen a movement disorder specialist although I'd like to have done by now. The problem I'm having is that the neurologists I've seen so far (apart from one) won't entertain the possibility of my having PD and say so in my health records that are available for any health professional to see. This is how it works in France where I live. So any doctor I see will look back at my medical history and dismiss PD because the "experts" before him have dismissed it. I always walk into appointments where the doctors have already made up their minds before going into any depth regarding my symptoms. It may well be the same if I manage to find a movement disorder specialist. In fact, at the moment I'm struggling to find such a specialist in France.

  • I am so sorry to hear that. Could you ask your doctor if you could see a movement specialist in order to find out what are causing your problems. The movement specialist is a neurologist that specializes in movement disorders. It never hurts to ask.

  • "I always walk into appointments where the doctors have already made up their minds before going into any depth regarding my symptoms. It may well be the same if I manage to find a movement disorder specialist. "

    That sounds utterly ridiculous though it does happen anywhere sadly.

    Perhaps, you could fly over to London and see a specialist? France isn't that far. :-) Having said that, you would probably need to go to Paris where there are bigger hospitals.

  • Are you and your brother identical twins?

  • No, we're not identical but I suppose our metabolism and genetic make up will still be be very similar.

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