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.

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

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.

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

Hi Curem,
I'm afraid that one of PD's persistent habits is to remind us constantly that it is there

Having said that sinemet still represents the so called 'gold standard' of treatment, and though for some there are big issues with it, for the majority of us it does represent a better quality of life, even with the difficult bits.

The statement from Dr Gupta is correct in it's essence, but for someone with no experience of PD treatments it could actually look quite scary. So you need to look at the whole statement, and the words like 'over time'. For the young onset person in their early 30's this means something completely different to someone who has late life onset, potentially 40 or 50 years, which is why finding a cure is so urgent, and even something that halts progression until a cure is found would be an improvement. Careful and well considered use of sinemet, for most, is not as problematic as it was in the past. Both doctors and patients have got better at understanding this, and so finding a good neuro who will collaborate with you is the ideal.

Symptoms can and do emerge as medications wear off and on, and are bothersome, but do not represent a progression of the disease, which is very slow. Finding your own personal balance is the big challenge, and takes time and patience.

But for now we have the drugs that are available, and there are emerging and valuable ideas on non-drug treatment of PD all the time, the best of which are exercise, and minimizing stress, which in themselves do not sound spectacular, but which actually reap many benefits. Cycling, Tai Chi, yoga, dance, aquasize and walking are all mentioned a lot, and some have scientific backup. Keeping on moving is essential and anything that helps that is good.........

Something I would also advise, especially as your PD is on your mind all the time is to find something you love to do, something you wished you had done earlier in life, or something you have an interest in but didn't have the time to pursue, and go for it! There are anecdotal accounts by many PwP that they can go many hours with no PD symptoms if absorbed in an activity they truly enjoy..........

If you look through posts on the forums you will also find that there is a crying need for patients like yourself who have not yet started on medication, for various studies, some of these do not entail taking medication, some do.

The value of participating in these studies is huge, and if this is something you feel you might like to do just ask, there are people here who know about how to volunteer for such studies, and where they are taking place. And please, if you feel this is not for you, do not worry about that either!!

As time goes on you may also consider advocacy - there are many thousands of PwP out there, many do not have or do not use computers, and so have less access to current information. There is something very special about doing things for other people, it takes you out of your own PD and can be a very real blessing.....

The main thing is that there is life after PD!

take care
Lindy

Vicky, keeping a journal is an excellent suggestion. Thanks so much for your guidance.
John

Hi, Curem.

I'm 46, and was diagnosed last year, in February. Shortly after my diagnosis, I began to notice new symptoms, and was convinced I was progressing rapidly. At that time, I had already begun a Sinemet regimen, but had not yet addressed the psychological/psychiatric components of PD (depression and anxiety caused by PD itself, or caused by the stress of a PD diagnosis). My MDS explained PD symptoms and anxiety are deeply, inexorably interwoven – that heightened levels of anxiety will exacerbate existing PD symptoms, including symptoms which might have gone unnoticed pre-diagnosis.

His words: “...heightened anxiety in dealing with this diagnosis is responsible for bringing out symptoms that are new for you to experience. The physiologic response to anxiety will 'drive' some manifestations of Parkinson's Disease that would be less noticeable if anxiety were less severe. This does not mean the condition itself is worse. Think of getting 'the shakes' when attempting public speaking or other anxiety provoking activity - it is a physiologic response to the anxiety.”

So, for me, psych meds (daily doses of Remeron and Ativan) have become important parts of my overall PD treatment – just as important as my PD meds, regular exercise, a good diet, and getting proper rest. When I miss doses of my psych meds, or if I fall down in other areas of my overall treatment, I pay a price in terms of exacerbated PD symptoms.

I know I haven't directly answered your question (PD meds or no), but I wanted to address the anxiety issue – mainly because I identify with it all too well. Getting some control over runaway anxiety has helped me better manage my PD symptoms, and it could help you as well.

I hope this helps.

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.

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

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.