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Is there a typical, rough timeline for progession, treatments?

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Unread 01-04-2008, 10:50 AM   #1
DocJohn
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Question Is there a typical, rough timeline for progession, treatments?

My dad has been living with his Parkinson's now for about 9 years, mainly being treated with L-dopa and something else (forget offhand). It's been working, but I think he's starting to reach the peak with this med combo. He just turned 70.

I'm just wondering what to expect over the next 10 years for him (and the 10 years after that), and what are typically the next treatments people try when the meds stop giving him relief of his symptoms.

Thanks,
John
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Unread 01-04-2008, 11:13 AM   #2
proudest_mama
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Default hope you get some answers

Hey John - I commend you for taking a pro active role in your dad's health. Do you want to come to Houston and help out here?!! Houston sure beats the weather in the Boston area?!

Just a bit punchy this morning. I am NOT a morning person but most errands, phone calls, etc. can't be done at 2:00 a.m. so I'm forced to be on the real world's time clock. It sucks. (Can I use that word?!)

Sure hope you get some info for your dad. The folks here are great - but you know that already if you're an Administrator. Thanks for volunteering your time.
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Unread 01-04-2008, 11:35 AM   #3
ashleyk
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Default Time Line?

I too would be interested in more information on what to expect in the time line on PD progression. I have been taking a relatively low mix of Sinemet and Mirapex for the past three years since my PD Dx. My main symptom, tremor, has not reappeared so I have not had to increase the PD meds. I have also been taking daily 600 mg of Q10 and 4.5 mg of naltrexone, LDN, over those three years to hopefully stop disease progression. Since I don't think I've progressed over that time, my question is why? I know PD is different for everyone with some progressing faster than others but is no or little progression over several years due to taking anti-neuroinflammatory drugs maybe like Q10 or LDN or are some of us really slow progressors? I know before I started on Sinemet my tremor was getting worse month by month over about two or three years.
Ashley
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Unread 01-04-2008, 12:11 PM   #4
indigogo
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Doc John -

There is no rough timeline for PD progression or treatment; everyone is different; no two people experience the same combination of symptoms; no two people respond to the same combination of medications.

I would suggest having your father evaluated by a qualified movement disorder specialist in your area; if you can afford it, it is worth seeking an evaluation from experts in other parts of the country who are engaged in innovative care options that supplement pharmacologic treatment with physical therapy, exercise, meditation, etc. to reduce stress and enhance movement.

Like your father, I am 9 years out from diagnosis - but I am only 50 years old. I am beginning an aggressive program of exercise (biking, swimming, yoga, weight training) in partnership with the occupational therapists at the Booth Gardner PD Clinic in the Seattle area to combat both the PD and depression; my meds are holding steady at a low dose; I am eager to see if I can improve without increasing my drug intake.

There are MANY options and avenues available to your father - the challenge is to find a good physician who is willing to work with you.
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Unread 01-04-2008, 12:12 PM   #5
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Default First..

Doc John, may I kindly reprimand you for saying "my dad is being treated with sinemet and something else, i forget offhand". YOu should have found out what the" something else" is before you asked your question. Even though we know you are a busy guy, it would have sounded to us much more like you are "on top" of your dads condition; this is just imho.
NOw, Doc, here on this site we have only a small number of "ten-yeared" PD citizens, one or two who have reached "almost 20 years with PD; and nobody who has reached 30 years with this disease who posts. So your "pool" of respondants to such a question is small and limited in it's scope since we are all so very different in the number and severity of PD symptoms.
YOur question is quite difficult to answer. Many of us have asked ourselves the same question and have spent hundreds of hours on line and elsewhere to try to get some kind of a feeling of what the future holds for us.
IT is also not something that we like to talk about as a group, becaus eit is , naturally, a depressing subject, and few people here wabt to dig wholeheartedly into depressing subjects.
WEll, that being said, I'll translate what i know from the perspective of a ten-yeared parkie. When the effects of sinemet start to wane, it becomes a time of franticaly trying everything in the book; titration up to a maximum dopa dose before side effects are intolerable, the addition of the different available agonists, DBS and other now not often used surgeries; alternative medicine (diet, rest in a "spa", exercise, chiropracty, etc.), addition of adjunct medication to treat specific symptoms (pain medication: trying all kinds of different antiepressants, until you hit one that does the job favorably, according to the patients perspective; muscle relaxers, etc.), and lifestyle changes (moving away from a cold climate, entering assisted living, attempting to remove any stress agents that may need some digging to identify), release from boredom is essential to ward away dementia.
That's all i have for you now, mainly because i'm trying to find the answer to the question myself. I hope that others can help you out here.
I believe that one of the most powerful medicines for a PWP is a feeling of being loved. A lot of us become "cranky" due in part to self-pity about the inability to change the downward course of the disease. It is difficult to love a cranky person, which leads to "i just can't deal with him/her anymore" on hte part of the person close to the PWP. Counseling on behalf of both the PWP and the caretaker/loved one of the PWP is difficult to find. IN the end , when a stubborn, PD advanced victim becomes unmanageable, I think it better to spare the caretaker/ loved one from further mental stress, and just institutionalize or put the PWP in some form of assisted living , where professionals can best handle the vagaries of this cruel disease. There is no point on losing your own sanity trying to deal with an obstreperous, cantankerous, unyielding PWP, if one cannot elicit change in them. THis is not "Abandonment" (since it'll probably cost you big time), an dyou shouldd not feel "guilty" about this course of action. Chances are that deep down, the PWP will know that this descision was made in the best interests of all involved. JUst my humble opinion. cs
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Unread 01-04-2008, 12:43 PM   #6
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Hi John,

Early onset is different from older onset; we get to have it longer.

The best thing your dad can do IMO is take care of himself in all aspects of his life. He is at an age where he just can't blow something off because of the "Parkinson's". He must exercise.

I recall neurologists predicting averages of 10-12 years of gainful employment left from onset of PD. Of course this would depend on age of onset. That was true of myself, I taught 11 years with PD and it's lack of energy that becomes the biggest reason for retiring.

They say the average PD patient lives 18 years, but that can't be including the early onsets. People live with it 20-30 years +.

But of course i have to stamp disclaimer all over those statements because we are all so different.

Not sure what you are referring to about 'reaching his peak'. It is common to develop dyskinesias and to begin having more off time; needing more l-dopa and other medications to control the side effects - if i wasn't taking amantadine, I'd be 100% dyskinetic.

Other than constantly adjusting medication protocol, there is the option of DBS, or he could participate in a clinical trial.

Not enough choices in our opinion! As I'm sure you've noticed!

wish him well,
paula
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Unread 01-04-2008, 12:43 PM   #7
ol'cs
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Default First..

Doc John, may I kindly reprimand you for saying "my dad is being treated with sinemet and something else, i forget offhand". YOu should have found out what the" something else" is before you asked your question. Even though we know you are a busy guy, it would have sounded to us much more like you are "on top" of your dads condition; this is just imho.
NOw, Doc, here on this site we have only a small number of "ten-yeared" PD citizens, one or two who have reached "almost 20 years with PD; and nobody who has reached 30 years with this disease who posts. So your "pool" of respondants to such a question is small and limited in it's scope since we are all so very different in the number and severity of PD symptoms.
YOur question is quite difficult to answer. Many of us have asked ourselves the same question and have spent hundreds of hours on line and elsewhere to try to get some kind of a feeling of what the future holds for us.
IT is also not something that we like to talk about as a group, becaus eit is , naturally, a depressing subject, and few people here wabt to dig wholeheartedly into depressing subjects.
WEll, that being said, I'll translate what i know from the perspective of a ten-yeared parkie. When the effects of sinemet start to wane, it becomes a time of franticaly trying everything in the book; titration up to a maximum dopa dose before side effects are intolerable, the addition of the different available agonists, DBS and other now not often used surgeries; alternative medicine (diet, rest in a "spa", exercise, chiropracty, etc.), addition of adjunct medication to treat specific symptoms (pain medication: trying all kinds of different antiepressants, until you hit one that does the job favorably, according to the patients perspective; muscle relaxers, etc.), and lifestyle changes (moving away from a cold climate, entering assisted living, attempting to remove any stress agents that may need some digging to identify), release from boredom is essential to ward away dementia.
That's all i have for you now, mainly because i'm trying to find the answer to the question myself. I hope that others can help you out here.
I believe that one of the most powerful medicines for a PWP is a feeling of being loved. A lot of us become "cranky" due in part to self-pity about the inability to change the downward course of the disease. It is difficult to love a cranky person, which leads to "i just can't deal with him/her anymore" on hte part of the person close to the PWP. Counseling on behalf of both the PWP and the caretaker/loved one of the PWP is difficult to find. IN the end , when a stubborn, PD advanced victim becomes unmanageable, I think it better to spare the caretaker/ loved one from further mental stress, and just institutionalize or put the PWP in some form of assisted living , where professionals can best handle the vagaries of this cruel disease. There is no point on losing your own sanity trying to deal with an obstreperous, cantankerous, unyielding PWP, if one cannot elicit change in them. THis is not "Abandonment" (since it'll probably cost you big time), an dyou shouldd not feel "guilty" about this course of action. Chances are that deep down, the PWP will know that this descision was made in the best interests of all involved. JUst my humble opinion. cs
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Unread 01-04-2008, 01:19 PM   #8
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Default Hi Doc John

I'm not sure if there is such a thing as a "typical" rate of symptom progression for PD. This is one of the things that make the determination of effectiveness of neuroprotection strategies so difficult. When one is slower progressing than someone else, this may be just an inherent variation in particlar patients. Some say that the prognosis of progression rate is poorer (faster) in those with bradykinesia-rigidity dominant disease, especially older patients, compared to younger patients and those with tremor dominant disease.

The three cases I am most familiar with are those in my family:
My mother, born in 1900, suffered from encephalitis at about age 16. She remained healthy, but began having tremor dominant symptoms at about age 36. She lost a lot of weight but continued to be reasonably functional (ambulatory) until age 60. However, I saw what I now know was significant dementia beginning at age 52-53. She became bedfast at about 65 and passed away from PD-related pneumonia at 72. L-Dopa came along too late to benefit her disease, although a short trial was made at 68, before carbidopa, with only aggravation of her dementia. She did take Artane beginning at about age 48, with some benefit in tremor control.

My brother, bon in 1926, was diagnosed at age 63 with tremor dominant PD, and was treated with carbidopa/levodopa (Sinemet), selegiline, COMT inhibitors, and probably some of the early dompamine agonists, like pergolide. He became essentially non-ambulatory at 73, with significant dementia at that time, and passed at age 79 from autonomic circulatory dysfunction.

Like my brother, I was diagnosed at 63 with slight bradykinesia and postural instabiity (both of us also struggled with depression for several years prior to Dx). My left foot-dragging and depression quickly responded to Sinemet, nailing the Dx. I continued with carbidopa/levodopa, with addition of amantadine (currently 75/500 mg carbi/levo, 100 mg amantadine). At 64 I began high-dose CoQ10 (900 mg) and at 65, low-dose dextromethorphan (4-6 mg). The latter two constitue my own attempts at neuroprotection. Now, at 69.5, I take one 50/200 carbi/levo CR plus one-half 25/100 regular carbi/levo at early morning and mid-afternoon. Dextromethorphan is taken at bedtime. With this regimen I don't experience any "off" periods, and, so far, my symptoms have progressed only to some shuffle-step festnation prior to morning meds. Otherwise, my gait is essentially normal, and I can run short distances (50-100 yards). My neurologist is delighted with the slow rate of progression of my symptoms, as am I.

John, and others who have read this far, I apologize for these lengthy descriptions, however these are the PD cases, including progression rates, with which I am most familiar.

Robert
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Unread 01-04-2008, 01:24 PM   #9
vlhperry
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Dear Doc John,

It sounds as though it is hard for you to watch helplessly as your father's condition worsens. There really is no timeline for Parkinson's disease as it is different for everyone. The best you could do is sit down and listen to your Dad's complaints and believe what he tells you then talk to his treating physician and attempt to have him see your father as a person who speaks the truth, and not allow your father to be tucked away into a file in the doctor's mind of patient's with similiar complaints. Unless your father's physician see's your Dad as an individual, he will never successfully treat him.

Sorry, I have a tendency to write with run-on sentences and make it difficult to understand my points.

Will pray for your family.

Love,
Vicky
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Unread 01-04-2008, 04:11 PM   #10
reverett123
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I don't think there is a typical progression or, if there is, it is concealed by our individual approaches to it and also by what happens to us along the way.

I noticed a tremor in 1992, was misdiagnosed as essential tremor, then in late 1999 got the flu, symptoms really ramped up, and I was dx as PD. My neuro says that I was the worst presentation for my age she'd ever seen (47 at the time) and also the best turnaround.

Notice that the flu came just prior to worsening symptoms. That is pretty common and one of the reasons I mentioned "what happens to us..." Any major stressor, physical or emotional, can push us down a slope which we may not be able to rescale. I would think that would be especially true of older folks.

The same year (2000) two people that I knew also received dx of PD. Both were roughly my age. One died last fall and the other is bedridden. Both of them relied exclusively on the standard approach. I ave done just the opposite and have tried many things. Most have been a waste of time bt a handful have been quite the opposite. I feel certain that something in my mix has made the difference but I can't point to one thing.

I lose a couple of hours of life turning on in the morning and another one or two being off at bedtime. I have relied mainly on Sinemet CR and Requip. The max I have ever reached on them is 800 mg of the former and 32 mg of the latter. That last figure is too much and I have cut it back to 24 mg by adding ginseng to my program. My neuro urges me to start an antidepressent for PD (I am not depressed but there are other reasons for it) but I refuse to add another drug to my liver if I can avoid it. If I followed her advice I might be doing better or I might not. Al in all though, for 15 years I am in decent shape.

I don't give medical advice but I will say what I would do if I were older and dealing with his situation. First, I would keep it as simple as possible. Second, I would look into dextromethorphan and turmeric and discuss with both my neuro and my pharmacist how they would get along with my other meds. Other than interactions, both have long, clean safety records and have solid research behind them. Medline should be the first stop and particular attention paid to the NIH team of Hong and Liu.

I wish you well.
-Rick
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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