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Gardener

What to expect?

44 posts in this topic

I was diagnosed two years ago at age 55, symptoms started about 4 years prior to diagnosis. I'm taking 4 Sinemet daily and functioning fairly well but do notice wearing-off, esp. in the morning when I waken. I've been reading the forum since being diagnosed and I'm struck by the fear and devastation expressed by both advanced members and new members. So my question to those who are at a more advanced stage is: What should I expect going forward? Will I lose my independence and, on average, how long after symptoms appear does this occur? Up to this point, I haven't felt the "emotional rollercoaster" that many express on this forum. I accepted the diagnosis well (it was a relief to have an explanation for the symptoms I had been experiencing) but I feel like I'm missing something. My MDS says that treatment will keep me functioning for a very long time. I want the truth so that I can prepare for the future. I would like to hear from those of you who have several years of experience with this disease (either as a caregiver or personally). Thanks.

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I cannot answer your questions on what to expect since I do not have a dx. (yet.) My fear is getting the diagnosis. Though, I have been greatly inspired by the way PD patients adjust to their new normal on this site and also on Patients Like Me.

 

Would you mind my asking what you very first symptoms were in those first 4 years?

 

Thanks, I hope others can help with your questions.

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Constipation was my first symptom (which started at least a decade or more ago). After turning 50 I noticed marked fatigue. I had always been a walker and noticed that I was tiring easily and the walks started to hurt my legs. My balance was off but I wasn't falling. I began having cognitive issues (got confused easily, memory problems, multi-tasking issues). I was stiff and my left hand had on and off pain. I had difficulty holding a razor and my toothbrush and felt like a 5-year old when tying my shoes. My voice softened and I was having problems chewing. My sleep was disrupted at night. I started the internal tremor. Next came a jaw tremor and speech problems (stuttering). That got my doctor's attention and within 30 days I was diagnosed. Hope that helps and also that you get some answers soon. The worst part is not knowing what's wrong.

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Thank you, yes no knowing is really tough. I have no fingernails left and am on anti anxiety meds and seeing a therapist.

 

So, you had all of those motor symptoms (other than the constipation)in the course of 4 years?

 

If you don't mind my asking where is your internal tremor? Was this your first symptom?

That is what I have had for 4 years with no change or additional motor symptoms.

 

Thanks again.

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I started noticing the internal tremor about the same time my jaw tremor began. These occurred only months before my diagnosis. The tremor was felt all over - a weak, shaky feeling inside. If you have had an internal tremor for four years with no progression and no other motor symptoms, in my humble opinion, it is unlikely that you have Parkinsons.

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Thank you Gardner, I see your point about it being 4 years with no progression, others have said the same.

 

I would be inclined to believe that if it wasn't on one side and at rest!!

 

That's the part that hangs me up and keeps shouting PD to me!

Edited by invisable

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My MDS just told me that UNLIKE the expression "if you've seen one, you've seen em all" with Pd , he said, if you've seen one patient with PD you;ve seen one patient with PD.

 

Bottom line...we may have similarities but we may also be quite different from each other and still have PD. WE should be careful not to assume that if someone else doesn't follow our own unique pattern of developing symptoms that they don't have PD. My own symptoms during the first years after diagnosis were very slow to develop. I can understand invisable's remarks entirely and hope she/he will continue to see her MDS for diagnosing and care.

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Thank you both for your replies. I just asked the Dr. and he replied that he has heard from his patients that they have had tremor for many, many years before diagnosis (not sure what many, many years equates to!!)

 

Oh goody, I get to agonize for many, many years now........oh joy, just what I need in back of my already obsessed mind!

 

Maybe we should start a pool on if I have PD or not (just kidding!)

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Invisable, I think you know that my last post was to give hope. But, back to my original post, can anyone tell me what the next stage will be like?

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Gardner,

 

I think what Woodbee was trying to say was that PD is very unique to each patient, so it is really difficult for anyone to say with any accuracy exactly how your PD will progress and at what rate. However, with that being said, in my research over the past year I have found some articles that suggest that roughly 50% of PD patients become disabled within 5 years of symptom onset, with that figure rising to around 80% at 10 years after symptom onset. Again, these are just rough estimates that vary depending on a wide range of fairly unpredictable factors. I am at the 5-year mark and am still working, but based on my current progression I have serious doubts that I'll make it past the 10 year mark without going on disability. This also doesn't directly answer your question about independence and functioning, which could continue for many, many years beyond which one could no longer work, but it's about the only thing I could find any actual numbers on. Hope this helps.

 

Kevin

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Kevin, It does help. I haven't been able to find any info. on this and when I ask my MDS she brushes it off and just says "you're doing fine." I'm a caregiver for my sister who has down syndrome and I'm trying to plan for her future as well as my own so having some idea of what to expect going forward is very important to me. Thank you for taking time to respond. Gardener

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The other day I went to a parkinson group picnic.I met a man who came down with PD about when I did.he now is 78 and doing wellThats 16 years of PD..Only noticed the tremor slighly..So no one knows what will happen.The doctors I have say mine is minimal and I get by with 3 sinemet only.I do use a cpac which helps.Now I have to get back into a early morning exercise plan.

My father had PD and he always said exercise helped him the most.

There are many promising treatments close now so I wouldn't worry.

the future and the past is outerenviroment which we can't control.Only the present is in our hands

Summer is slipping away but we did get rid of the awful drough.

Im starting a Parkinson Cafe this fall in our area.meeting others like ourselves helps all.

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You are right Johnnys, none of us know, they call PD the snowflake disease, no two people are alike in progression. I guess we have to get used to uncertainty, none of us like it, but we have no control.

 

I love the idea of a PD cafe, there is nothing like being together with those that understand, nothing like it!

 

If you don't mind my asking where in NYS is this going to be. I live in NYS also........Western NY.

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there are three cafes now ill be working at the highlands in pittsford outside rochester two ohters also in rochester .

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oh, a little too far for me, but I do have a second opinion with a Dr in Rochester, Irene Richards. Ever hear of her?

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Well that is one doctor I would avoid.I waited to see her for almost a year.When I came i was seen by a resident.She did come in for a few minutes.Get the idea?Dr. Michele Burback is the best there.I know others who see her.Dr. Marshall is good if you can get to see him.

Some Strong doctors like to scan.It makes alot of money but tells you little.Maybe we can talk more.My VA helped me more but if I couldnt get into seeing dr. Burback or dr. marshall.

john

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Interesting, I am going to make a call there, I do not want a resident, I have been waiting 4 months and it is a 2 hour drive for me. They told me Richards was the only one taking new patients.

 

I had a feeling they were going to push for the Dat (SPECT) SCAN, which I may just go for given my unusual presentation and 4 years with no progression.

 

Thank you for the heads up!

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Greetings all, Lee Meddin here, diagnosed April 2010. I’ve developed a Parkinson’s news site that you might find interesting (part free, part paid). Each day I scour the web for breaking Parkinson’s news; when I find something worthwhile, I post it, with a link back to the original article. Many of the articles are very hopeful (new discoveries, therapies, etc.), which is why I started the site. Take a look and let me know what you think, and how I can improve it. See www.parkinsonsnews.com, and reach me at info@parkinsonsnews.com. Thanks.

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The main problem with PD is that no one knows how it will progress or how it will affect many aspects of a person's life.

I haven't been officially diagnosed with PD yet. But I am having every possible symptom on the books and then some. Maybe if there is a super PD, I would be a good candidate to have it.

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http://www.medicinen...mor/article.htm

 

"The symptoms of brain tumors depend on their size, type, and location.

 

The most common symptoms of brain tumors include headaches; numbness or tingling in the arms or legs; seizures, memory problems; mood and personality changes; balance and walking problems; nausea and vomiting; changes in speech, vision, or hearing".

 

Well, I have most of these symptoms. Headaches? Sometimes. Numbness. A little. Memory issues. Yes, I guess so. I keep forgetting things. Mood and personality changes. Oh, yeah. Balance and walking problems. Yeah, definitely THAT. Nausea. Yeah, definitely that too. Changes in vision, speech or hearing? Yeah, my vision gets blurry and I have some difficulty with speech when I am tired. Seizures? No. 7 out of 8. So, what's the verdict here? Do I have a brain tumor? No.

 

Strangely, a patient may have ALL the symptoms of a disease and not the disease itself. That's why a diagnosis is never based solely on patient's symptoms (which are better evaluated only by a physician and not by the patient himself), but also on imaging and laboratory tests. The diagnosis process is much more complex than it seems.

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http://www.medicinen...mor/article.htm

 

"The symptoms of brain tumors depend on their size, type, and location.

 

The most common symptoms of brain tumors include headaches; numbness or tingling in the arms or legs; seizures, memory problems; mood and personality changes; balance and walking problems; nausea and vomiting; changes in speech, vision, or hearing".

 

Well, I have most of these symptoms. Headaches? Sometimes. Numbness. A little. Memory issues. Yes, I guess so. I keep forgetting things. Mood and personality changes. Oh, yeah. Balance and walking problems. Yeah, definitely THAT. Nausea. Yeah, definitely that too. Changes in vision, speech or hearing? Yeah, my vision gets blurry and I have some difficulty with speech when I am tired. Seizures? No. 7 out of 8. So, what's the verdict here? Do I have a brain tumor? No.

 

Strangely, a patient may have ALL the symptoms of a disease and not the disease itself. That's why a diagnosis is never based solely on patient's symptoms (which are better evaluated only by a physician and not by the patient himself), but also on imaging and laboratory tests. The diagnosis process is much more complex than it seems.

 

Baloney. Are brain tumor symptoms remedied by Sinemet? No, emphatically. Case closed - diagnosis accomplished. Why do you persist in over complicating the issue, Christie?

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Roger,

Observed response to a treatment is not an observation of symptoms, even if it is a great way to confirm the DX of PD. Christie's point is very valid, especially in Saad's case where we have heard all the symptom's but the Doctor has not made a DX of PD. If Saad could convince the Doc to a sinemet trial, that would most likely confirm or eliminate PD in this case.

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Would a trial of sinemet actually confirm or eliminate a diagnosis of PD? The gold standard trial of sinemet is thrown around here as the best way to confirm a diagnosis of PD. If someone happens to have psychosomatic symptoms, wouldn't it make sense that sinemet would give the appearance that it's working for the patient. I've been reading the trials of TrembleNurse and Metfan, and the trial for them makes sense. But even they have both have had doubts as to the whether the drug was actually helping. With the advent of new diagnostic testing, i.e. DaT or Pet Scan, can be used in conjunction with a clinical examination to either confirm or reject a diagnosis of Parkinson's in hard to determine cases. I've read in places that a small percentage of people who have Parkinson's do not respond to sinemet or other PD drugs. Does that mean they don't have PD?

 

In the case of Saad, he needs to see a Neurologist sooner rather than later. He needs to address this so he can get on with his life.

 

Dave

Edited by DaveN
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Baloney. Are brain tumor symptoms remedied by Sinemet? No, emphatically. Case closed - diagnosis accomplished. Why do you persist in over complicating the issue, Christie?

 

"Case closed"..."Diagnosis accomplished"...What is this? A courtroom?

 

Should I really explain the obvious? that the "brain tumor" was just an example. Could be any other disease, neurologic or not. I just wanted to show to Saad that he cannot diagnose himself. And to emphasize that even if a patient has ALL the symptoms of ANY disease this doesn't necessarily mean he has the disease.

 

Who said anything about treatment, Sinemet or a drug challenge? Not me ! All these very serious options should be decided and monitored by a physician ONLY and not by the patient, me or any other member in this forum.

 

For your information Roger...Although patients with Parkinson's disease do respond to levodopa not every patient who responds to levodopa has Parkinson's. Levodopa-responsive dystonia, other dystonias, psychogenic parkinsonism-among other conditions- may also respond to levodopa, in varying degrees. Only a neurologist-and a very experienced one-can make this very difficult distinction.

Edited by christie
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like I said...baloney. Over 90% of Parkinsonians are diagnosed by using L-dopa responsiveness tests administered by their neurologists. Deal with it and work on your bedside manner, sweetheart. As some kind of 'physician' your testing propensity is showing. Lawyers and common people (patients) recognize it as 'CYA (cover your azz) phenonmena' that is bankrupting the US health care system.

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