[Judith]

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).

Parkinson’s symptoms: Generally, I am doing very well and do not feel that I need to increase medication. However I do experience the following symptoms: Muscle spasms of torso, neck and shoulder rigidity, tremors in both legs, arms, and hands, but usually more on right side, cramps and rigidity in feet. Balance issues seem to vary.

I have found the following helpful:

• Massage: My therapist is an RN and certified massage therapist and she administers a 2-3 hour deep tissue massage to my entire body every two weeks.
  Impact on symptoms: She begins with the iliopsoas (torso muscles) because that is the frequent source of muscle spasms. My neck and shoulders are always rock hard. My left foot doesn’t completely bend downward, and the toes on my right foot don’t bend upward. Although massages are always painful, I am able to stand up straighter and walk better because of them.
  
  
• Yoga: I have been fortunate to have private lessons for the last two months. (However, I have been practicing yoga in a class or on my own for about 20 years!)
  Impact on symptoms: I feel the yoga helps tremendously with balance, flexibility, strength, and breathing. Balance is always poorer on my right side. I sometimes have tremors in my legs (both) with or after certain poses.
  
  
• Music: I play my dulcimer for hospice patients and for community events. I practice for an hour or two every night and do not experience tremor when I play. I gave a solo performance in November and now have four “YouTube” videos.
  Impact on symptoms: I have been able to improve my hand strength and coordination. In addition, I feel that playing for others and myself has been tremendously uplifting and calming.
  
  
• Medication: I take sinemet exactly on time and rarely miss any doses. (I have done this for years, with the help of a pill alarm, and I believe it helps maintain a steady amount of dopamine in my system).
  Impact on symptoms:I do not experience fluctuations in movement (offs and ons).
  

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.

[soccertese]

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

[RLSmi]

Originally Posted by Judith

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).

[/list]
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.

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

[Judith]

Originally Posted by soccertese

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

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

[Judith]

Originally Posted by RLSmi

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

Hi Robert,

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

Judith

[RLSmi]

Originally Posted by Judith

Hi Robert,

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

Judith

Thanks for sharing your performances. I watched all four!

Robert

[lindylanka]

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

[Judith]

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

[Conductor71]

Originally Posted by Judith

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

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

[Judith]

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