Symptoms worsening....desperately need advice on medication options.
 

Hi everyone.

I am 69 and last year was diagnosed with PD. Up until the last few weeks, my symptoms were a slight hand tremor, jaw tremor, and some muscle spasms in my left bicep.

However, tonight I notice that for the first time my right bicep is also spasming and my tremors are getting more obvious.

I have been taking a ton of nutritional supplements but my symptoms are causing me so much stress that I'm losing my appetite and can't seem to think about anything else.

So I have decided to make the leap to medication.

I tried researching on my own, but there is just SO much info that I can't make heads or tails of it.

Here is what I'm trying to find out:

-What is the latest medication available for PD, how effective is it, and what are the sides

-Is there any other latest and greatest treatment that I should know about?

Thank you all so much and I VERY much look forward to your replies.

Hi Curem
 

When you were initially diagnosed, what did your physician recommend? Did you try nutritional suppliments because you were afraid of meds? Did the physician not make any suggestions as to treatment?

What you might want to try is a team approach to your disease. Try contacting the National Parkinson Foundation (NPF) or the American Parkinson Association (APA) to get a list of Parkinson focused (usually movement dis-order clinics) to be evaluated. These centers are staffed with Social Workers who recommend community resources (transportation issues, housekeeping, help to maintain independent living, etc.,) Movement Disorder Specialist (neurologist who specializes in Movement disorders,) Physical Therapist (exercise is strongly recommended,) Occupational therapist (makes recommendations on tools to make independent living easier to attain,) and a Speech Therapist (evaluates your speech problems and recommends exercises to improve your voice.)

These Parkinson centers also sponser Support Groups and classes like , Music Therapy, physical therapy oriented classes, (Yoga, Tai Chi, dance, etc.)

Sincerely,
Vicky Lynn

curem and others
 

First, I would like to welcome all the new faces around here. This place is to valuable to let die and new blood is needed on an ongoing basis to replace all those who have been cured. :D

Curem asks a very good question and I'll give it my shot.
Generally speaking, PD is slow in worsening. Years. If you are seeing "progression" the first question is "Why?" In particular, be sure you don't have a hidden infection such as a urinary tract or periodontal one. An infected big toe can trigger inflammation in the brain and send PD sympoms through the roof. Next is stress of any sort. Again, the effect is way out of proportion. Finally, any new meds or life changes coincide with the problem?

As for meds, despite the curses that I heap upon sinemet, it has a couple of things going for it. It works. And it has been around long enough that we know more about it.

Hello, Curem, and welcome to Neurotalk.

Your message was interesting for a few reasons, one that you are new here! You don't say what other symptoms you have than tremor and some muscle spasm, and don't mention rigidity, balance etc, but as you have a diagnosis, I am assuming that you have some measure of them as well as possibly being slower than you used to be........ You also do not say how much your doctor told you about treatments, which fall into a few categories. If you don't know about these, here is a very incomplete and rough guide!

1. Levodopa based medication, of which Sinemet is the most well-known. But also Stalevo that combines levodopa with entacapone to make a med that gets to the brain more easily..... there are also other ldopa formulations of various kinds. These all replace dopamine

2. Agonists - they work by fooling the brain by attaching to receptors. Mirapex and Requip are the best known.

3. Neuroprotective medications that help protect the brain from further damage. There are lots of these, though nothing is proven.

4. A host of add-on medications

There is lots of info on all of these, probably too much! But lots of questions too and lots of discussion, because each of us is a snowflake, different. We respond to medication individually, and our condition can vary hugely from one person to another.

As you are not yet on medication I guess that was a personal choice, made with your doctor.

• You need to ask yourself how well you are managing your life.....
• Is there a big change from last year to this year?
• Are your symptoms bothering you a lot?
• Are you having to give up doing things that add to your quality of life?

If your answer to these is no then maybe you are not ready yet... If it is yes you need another chat with your doctor to discuss your options.

There is a lot of negative stuff said about sinemet, and in the past it has not always been administered and managed as well as it could have been. It is however much better understood these days, and for someone your age it should not be feared. It may not suit, but that is true of all PD drugs.......

Only you know whether you are ready.

If you do decide to get medicated this might be useful to remember that taking more medication may not necessarily make you feel better, what you need to do is find the balance that suits you.... your doctor should be able to help with this........

Good luck making a decision

Lindy

a good starting point
 

http://www.nwpf.org/wellness/Physica...dications.aspx

you've got a dopamine deficiency. eventually we all need more dopamine or a dopamine analog. sinemet has been around for 30 years or more. you may feel a major improvement after the first dose but regardless, there's no danger in trying it for a week and then discontinuing it . at least you'd have peace of mind that it's effective if you absolutely need something in the future.

pd is a chronic illness and whether you are taking "natural" supplements or a synthetic drug there are going to be side affects. dopamine in sinemet is synthesized but is a simple amino acid. unfortunately when your brain doesn't make enough just like when your pancreas doesn't make enough insulin you have to take an external source and the challenge is getting the right amount in the bloodstream and even then the neurons in the brain don't always need the same amount of dopamine it seems.

getting ahead of myself here. in my opinion, no big deal to try sinemet, bigger commitment to try an agonist.

bigger question, do you have insurance and seeing a doctor? did you get a 2nd opinion?

Hi Vicky Lynn,
Thanks so much for your suggestions. We have a Parkinson's center here in Miami and I will call them tomorrow.

You asked if I tried nutritional supplements because I was afraid of meds. Yes I'm scared to death of med's. Dr. Sanje Gupta, in his interview with Michael J Fox on CNN, said that over time you can develop a tolerance for the meds and if you miss a dose the symptoms can come back, sometimes worse, although there is "some progress in trying to minimize tolerance." (whatever "some progress" means)

I am anxious to hear your thoughts on the above quote.

Thanks so much for your encouraging words and warm welcome! As for whether or not I have an infection, I assume that I don't but I have no way of knowing for sure.

In any case, when (if?) I do make the leap to meds, I will absolutely look into Sinemet.

Thank you so much Lindy for the thoughtful reply.

To answer your questions, I would say the biggest problem for me at this point is that I notice the symptoms and they remind me that I have PD, which makes me obsessively think about it and worry about the future.

I was VERY encouraged by your statement that sinemet "should not be feared at my age". And I'm wondering what made you come to that conclusion.

Soccertese,

For some reason I found your post very comforting. I like the idea of thinking of sinemet as an amino acid for my brain rather than a hardcore PD drug.

I also really like the idea of perhaps trying it to see if my symptoms dissappear. A relationship with no commitment is right up my alley! :)

Thank you for your kind words. As to Michael Fox's quote, I could only speculate the meaning. I will say this. When you make your appointment with the Miami clinic, be prepared with a list of questions to ask the neurologist. If you come prepared, most neurologist's are hapy to take the time to answer any questions you may have. Many times we walk into the doctor's examining room and the stress of the upcoming exam can blow are questions out of our brain.

Consider keeping a journal to keep track of when your symptoms are worse. In the morning? At night? After eating? Look for patterns in your journal to discuss with your physician.

I feel it is very important to make the physician to see you as a person, not just another patient. Talk about things you enjoy doing and how your symptoms have interfered with your ability to continue doing them.

Good Luck getting your appointment made. These centers are usually hopping so it may take a month or more to wait for an appointment. Keep journaling and writing your list of questions, it will be worth the wait.

Vicky