Report to my neuro: What works for me
 

I rarely post on this message board, although I've been around for a long time. With a bit of a gulp, I'm stepping out of the shadows (and my comfort zone) to share my current situation, with the hope that it will help someone somewhere.

I was diagnosed with PD 8 1/2 years ago and for the first few years it seemed to be progressing rather quickly. At one point, I couldn't walk to my mailbox and back, needed help getting up from a chair or the floor, and once fell face first on pavement. I was depressed and in pain most of the time and couldn't care for my house or do much except sit in a chair all day long.

It's a long story about how I improved, but I feel that a big part of it had to do with finding the right doctor (a movement disorder specialist) and the right meds (including an antidepressant and pain meds for a while), finding a "passion" in life, and adopting an attitude of adaptive thinking and letting go of things I can't change.

This week I had a checkup with my neurologist and things have been going so well for me that I thought it might be worth sharing my report with all of you. Although I know that we are all different, I hope you will find something helpful here. (What follows is my written report to the neuro. Note, the italics were added for this post and were not part of the original report).


On the one hand, I feel very fortunate that my progression has been slow. However, I also feel that I am working hard to help myself. My doctor said that, according to research, the single most helpful thing in slowing progression is exercise and staying as active as possible. I also think it helps that I have things to do that I love and that keep me busy and focused on something besides myself.

Thanks for letting me share with you. I wish you all well.

Judith

PS: Note: I forgot to mention that if you were to see me today, you would never guess that I have PD. Most people aren't aware of it.

could i ask what sinemet formulation/strength/times you take?
did you try any agonists or any other meds?

What a great post!
 

Thanks for sharing, especially because of the "gulp" factor.
I would really like to view your You Tube performances.
Robert

Hi, Soccertese,

I'm currently taking 25/100 sinemet at 8 am, 1 pm, 6 pm, and 11 pm.

I was on requip (2 mg x 4) for quite a long time, but I was a zombie on it (sleepy all the time), and had added amantadine artane,and eldepryl at various times. Once I switched to sinemet my symptoms improved a lot. I started at 3 doses a day but increased to 4 to control tremor. I haven't had to increase my dosage of sinemet for several years.

I am still taking nortriptyline for depression.

Judith

Hi Robert,

You can see my YouTube videos at http://www.youtube.com/user/dulcimerintheforest

Judith

Beautiful!
 

:)Thanks for sharing your performances. I watched all four!

Robert

Dear Judith
Lovely to see you here, your playing was wonderful, and your post was very heartening, glad you are doing so well on sinemet, and that life is treating you well. Your rare posts are always very much appreciated.

best always
Lindy

So nice to hear from you, Lindy. I hope you are coping well with everything. It is good to be in touch!

Thanks for your kind words,

Judith

We can still make a difference....
 

Welcome to the spotlight! You have made quite a first post because it hits an important point that many newly diagnosed PWP might not know...taking large doses of an agonist and suffering because of it is not the way it has to be...

When I read your post, I was struck by how you were able to maintain your positive attitude despite how inadequately other doctors were treating you.
You show that although we might feel rather helpless at times, attitude is one thing we can still control and that it can affect our health. I cringe when I read of PWP, especially younger onset, who suffer needlessly for years because their doctors believe that Sinemet must be spared until one is near bed-ridden. I am hoping that others out there will see your post and hold their doctors to a little higher standard as well!

Thanks for this and hope you continue to share!

Laura

Thanks!
 

Laura: I agree with your point about PWP suffering through agonists rather than taking sinemet and about doctors postponing its introduction, often to the detriment of the patient's quality of life. I also believe that my own adherence to a strict schedule has minimized a lot of the problems typically connected to sinemet. Time will tell.

As for my attitude, I've been harshly criticized in the past for being too positive and that's why the "gulp factor" about posting here. I do feel that my attitude affects my general sense of well-being and it is part of "what works for me." I still feel the effects of PD, but how I think about them is a choice.

One of my favorite quotes come from Richard Bach's book ILLUSIONS, "Argue for your limitations and, sure enough, they're yours." I try to argue for my possibilities, rather than my limitations.

Thanks for your supportive response,

Judith

Are you taking the brand name or the generic?
 

Just interested based on your dosage you're on very little sinemet for having PD for some 8 yrs. Best of luck in the future, look forward to haring more.

Hi, Jim.

I'm really pleased to report that it's generic. I know how very fortunate I am.

J:-)

what are the keys to a positive attitude?
 

Hi Judith -

Your experience mirrors my own. I admire your discipline regarding dosage, exercise, and activities.

I have been dx'd with PD for 11 years now; take sinemet 3xday plus amantadine, requip (1 mg 3xday), and celexa. The timing of dosage is inexact (except for the anti-depressant - one every morning!).

I am far more sedentary, but keep an active and engaged mind and life. I'm planning a trip that will take me outdoors and moving for long periods of time; I think regular physical exercise will enhance my well being, but I loathe gym time and live in an area with a paucity of yoga-and-other-type instructors. I had to find something I actually wanted to do in order to get me up and moving - it turns out to be horseback riding.

Attitude is all-important. I think it is a hard thing to promote in a forum like this because it is more easily said than done; it is much more difficult than simply deciding to be positive. Many suffer from depression, and a sunny outlook is difficult for them to imagine. For those who are reading this from a dark place in your life, please note that both Judith and I take anti-depressants; it was not possible for me to find the good attitude that propels me now without first tackling depression and anxiety with medication and talk therapy. I work hard to keep both at bay.

Seems like the ingredients for improving symptoms and quality of life are:

1. A good relationship with an MDS
2. Appropriate medication dosing, not over dosing, for your particular set of symptoms, including mental and emotional symptoms.
3. Any activity that keeps you physically moving and flexing your fine and gross motor skills.
4. If you love to do that activity, your mood will improve along with your physical symptoms. Thus begins a positive cycle of improvement that hopefully leads to happiness.

I think it is a shame that posting about the benefits of positive thinking is criticized; at the same time, I have been one of the biggest critics. I struggle with how to present the good life I have found living with PD to those who find the idea impossible. I tend to err on the side of empathy with those who despair; I know what it feels like, and "positive attitude" are words that leave many cold.

So what's the answer, Forum Folk? What Judith has to say, what she has learned about living well with PD, is really important. What's the best way to communicate the real-life virtues and benefits of a positive attitude to those who are struggling to simply survive?

Because it really is the key to a better life with PD.

Maybe the answer lies within this thread - talking about strategies to remain positive rather than just saying that being positive is important?

What Judith says is so true for me - everyday when I wake up, I make a conscious choice to be positive or not. Sometimes the answer is "no"; more often, now, it is "yes." I'm not sure what tipped the balance for me, but maybe trying to figure out how to grasp the elusive keys to happiness would be a worthwhile exercise for all of us.

One of the first and most valuable things anyone said to me on the forums was 'have a good attitude to your PD'. Somebody, I don't remember who, also said that PD is something that makes you look at yourself a lot, and to resist the temptation to do it too much, and instead channel it to something useful. I'm never quite sure about the word 'positive' simply because it implies a negative is what you are being otherwise. Not-so-good is somehow a little less difficult to deal with. ;)

Indigo, I truly believe that your second point, where you say 'Appropriate medication dosing, not over dosing, for your particular set of symptoms, including mental and emotional symptoms' is crucial.

When we are first diagnosed we have starving brains, starved of dopamine, and after a while that evens out. If we are on too much medication we then start to feel we are progressing fast, and this can be misread, in many ways, not just by us but by our medical professionals. Too much medication is as ruinous to our health and mental well-being as too little. But we are novices at the beginning and have a lot to learn, and our doctors should, in a perfect world, be able to steer us through this 'appropriately' ...........

Over and above that I wish that every single person presenting with PD symptoms was, right at the beginning, encouraged to be as physical as possible, and to work with someone who can identify what is happening physiologically. My physiotherapist worked wonderfully with me last year to show me where I was losing function, and how to maintain and improve what is there. However that took nearly seven years to happen. Though I have not needed it yet, I believe the same should be on offer for cognitive and mental aspects of PD as part of a holistic approach to PD, in an ongoing way, but again offered early on, and discussed in relation both to PD and medication regimes, FOR ALL PATIENTS as standard practice.

Judith, thanks for starting this thread. It would be interesting to hear a little more about your recent PD journey.....

Lindy

judith,
did you try 200mg extended release sinemet and if so, any luck?
obviously if it did you'd be using it.
i'm in my 10th year.
i couldn't tolerate mirapex or requip but am doing well on 100mg 3-4x / day generic sinemet.

trying to work in extended release sinemet but the results are unpredictable, sometimes i feel worse and the affect is never as good as regular sinemet? trying 200mg extended release + 50mg of regular, that seems to work but i ask myself why bother with the extended.

Hi Soccertese,

I hadn't thought much about extended release sinemet because I'm doing so well on my current version. If it seems that I need more or to stretch it out in the future, that may be a consideration. Thanks for the suggestion.

It's helpful to hear that others also have had trouble with agonists and it wasn't just me. Glad you're doing so well on sinemet! For me, it's been a miracle drug.

Judith

Hi Carey,

Thanks so much for your post. I'm really glad to hear that you are doing so well.

Like you, I empathize tremendously with people who are struggling. I know the quiet desperation that comes with depression, both personally and as a friend. I feel that it is ok to vent from time to time. However, pity parties are best if they are brief and not very frequent, because that sort of negativity is like a whirlpool; it can suck you down.

Your point about antidepressants is very important. There is no shame in taking an antidepressant; it doesn't mean you are a nut case. But there is no way to foster positivity when you are depressed.

I will write another post very soon about some of the strategies for a positive attitude and I'm looking forward to hearing what others share.

Thanks for starting this conversation!

Lindy,

You made some excellent points about medication and physical activity. Thanks!

More to come soon,

Judith

even 0.25mg mirapex would turn me into a zombie, make my symptoms worse and cause my feet to swell.
sinemet works great, but the wearing off is so quick, back to terrific muscle rigidity, pain and brain fog. that's why i'm trying the extended release, to try to even out the doseage/affect.

anyone on just extended release? doseage/times?

You may want to just skip it and try an agonist XL
 

I know what you mean about feeling worse on CR. I just wanted to caution others to tread lightly with Sinemet CR. I have tried it and learned there is a build up effect in your system throughout the day, so it can trigger dyskinesia or other ill effects from having too much peripheral dopamine in one's system. I couldn't figure out why afternoons were hell for me until I read a few articles on it.

I have also had difficulty with agonist side effects but Requip XL is fantastic. I am smooth pretty much all day with that once a day and regular Sinemet.

I also have added Cymbalta XR to the mix and though it is an SNRI (working on Norepinephrine and Serotonin uptake) it clearly helps out with dopamine too. I am taking less Sinemet now as well- it is quite a happy pill! :)

Laura

Would like to second Laura's post on CR. I combined the regular and cr for a couple of years, and felt very vague and unmotivated, had no idea that the type of med could also affect things. Now on regular only and much better. Actually it seems better to be on the simplest regime possible.........

When my meds have worked least well is when there are other things going on with health and well-being, some of them can trigger patchy uptake of sinemet.

How I keep a good attitude
 

Reducing dis-ease (dis-comfort, dis-stress): I try to focus on today and what I can do and how to use my skills and sensibilities differently. Focusing on what I can't do just stresses/distresses me. I can't change the fact that I have PD, but I can try not to make it feel worse by Should statements, What-Ifs, and Awfuls.

I also try to accept PD rather than fighting it. For me, acceptance doesn't mean giving up or giving in, but instead

• Going with what IS rather than what Should be
• Looking for ways to counter new symptoms, to reduce them, or to live better with them. Massage and yoga help me, but that's not for everyone. We need to find what suits our lifestyle and helps us cope.
• Acting out of practical adaptive thinking about what will help me most, rather than out of anger and embarrassment. The focus is on thinking, not on upset feelings, because the latter tear a person up.
• Changing what I can change, and letting go of the Need to change what I cant. (Serenity Prayer).

Lindy is right that PD makes us look at ourselves a lot. One way I try to avoid that is to focus on giving back to others...mostly through my music, but in other ways too.

Note: Indigogo had asked us to post tips/strategies for maintaining a positive attitude. I had posted a rather lengthy, and somewhat "preachy" response. As I looked at it a day later, it seemed like a good idea to just pull out the key points and let the rest go.

J:-)