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

Hi Curem, I'm also a newbie on this site but chatted for a year on another site. Your concern is echoed by most of us with "Parkie Flu" So know that you have lots of love and support here :grouphug:

VLHPerry brought out an important consideration...form a team. When DX 3 years ago, I saw a neuro who wanted me on meds immediately. So, being a health teacher, I saw a MD specialist for a second opinion, naturepathic Doctor specializing in neuro disorders, and a physical therapist to establish baseline data. That was my team!

So now, with input from all, I'm taking neuro-protective supplements, an MAO-B inhibitor, mucuna, exercising and reducing stress. Seems so be working fine so far FOR ME.

But each of us is unique so you might think about forming your "team" if you are financially able. We wish you all the best on this journey. Don

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.

Sarasota PD conference january 22
 

On January 22, there is a great looking conference in Sarasota Florida. Some of the top researchers will be there including Dr. Langston from CA, the man who discovered a way to research pd when some bad heroine gave some people instant PD.

Also, Dr. Ole Isacson, the sharp looking researcher from harvard that we used to swoon over until he married a beautiful young lady. He is a stem cell researcher and implanted pig cells into human brains. One of them, Jim Finn was at a clinical research learning institute a few years ago. He is dyskinetic but alive and walking after [not sure maybe 15 years?].

i live in east central florida and think i'm going to get my family to this one, it's time my husband gets his eyes opened to what i've been talking about all these years. my daughters have been to conferences and one knows what it's all about. i've been separated for 6 years and reunited for more than 2 years so my husband hasn't been involved enough, altho he has met many of my friends.

anyway, hope to see you there! and any others that may attend! it's one to travel to if you live in FLorida and of course from beyond. It is short tho. only half of a Saturday.

http://www.smh.com/release.aspx?r=132

Paula..I am a member of Jim's support group..He is not doing good, and hasnt been to a meeting in quite a while..He took a nasty fall down the stairs a couple of years ago, and he has not been back to the group since

He did however , as you say, enjoy some years of quality life, as a result of the transplant

jim finn
 

Steve,

I'm very sorry to hear that. It's been a couple of years almost since I saw him. Falls are the scariest part. It leads to so many others things like rib injury, which in turn make it impossible to cough, which allows the lungs to build up, pneumonia and so on.

and when you tell a pwp like Jim, hope you get better soon or speedy recovery, it is a nice thing to do , but sounds a little hollow. Get better for what? Thanks for letting us know.

You're Welcome Paula..I forgot to mention, that his fall landed him in Newport Hospital for a week or so..Unfortunately, Jim's pd has returned to an advanced stage

Our group has dwindled down to about 8 people, and we are going to make an effort to recruit more members, as well as go through the old group list and try to find out the status of the people who have vanished from the radar screen, and hopefully see if we can get some of them, if possible, to come back to the meeting..I hope Jim is one of them, but he has not been feeling well enough to participate

Hi Mantaray, How refreshing to hear of a neuro who in addition to his qualifications possesses common-sense and a real insight to his patients. I mentioned to my neuro that although I was fine really since starting medication 18 months ago, I had not got back my confidence to go on organised trips with strangers as I used to. He started a long ramble about the changes in personality that can occur with PD and I said well ac tually its because I know I've got PD. He looked quite startled at this as if it had never occurred to him. I have been recommended to take Rasageline (MAO inhibitor) with my low dose sinemet (I am 71) and your post has encouraged to take it if my symptoms go back to more than an occasional shaky arm. Plenty of exercise -rambling, yoga, zumba dancexercise has helped to reverse a problem I had with my hips (together with three courses of steroid) Like you I was determined to optimise what I could control to counterract the insidious effects of the PD . In fact today I managed to do a manoeuvre in Yoga which I have never been able to do before - the bow which is face down and catch your feet with your hands.

Hi, Paddy.

Yes, I'm extremely lucky to be under the care of my particular MDS. He's head of his department, and has had a 20-year association with NIH.

Every other day for months, I hit the man with a barrage of questions and concerns - in person, over the phone, over e-mail - while I struggled to come to grips with my diagnosis. At all times, he was thoughtful, considerate, and completely a professional, answering all of my questions calmly and in great detail. Like I said, I feel *very* lucky.

You sound like an incredibly active person, and I think that's fantastic. That you can perform the yoga pose you described... well, I'm jealous. If I try from a standing position to touch my toes, I wind up looking like nothing more than a lower-case "r" from the side. I'm kind of a computer nerd, and I'm not accustomed to regular exercise, but I'm forcing myself to do something every day - and I can tell it's having an impact. Not that I do so much - I basically walk 2.5 miles to work each day, do some light weight-lifting at night, and I go on strenuous weekend hikes with my wife when the weather is good. I'm hoping to expand my exercise routine as I hopefully build more stamina over time. Oh, and I'm taking part soon in a local runner's marathon which has a side event for people who want to walk (like me).

I'm a firm believer in the "brain plasticity" thing. Early on, about 2 years before I was diagnosed, I noticed my left hand would tremble when I'd use it to take a drink of wine, coffee, or whatever. I believe I was experiencing cogwheel rigidity, but didn't know it. Funny thing, I forced myself to use my "bad hand" as often as possible, to try to "re-train" my brain, and I could swear my symptoms were improving slowly, gradually.

Anyway, I've rambled on way too long. Best of luck to you, and I do hope you'll regain enough confidence to go on those trips you described. They sound like something you really enjoy.

Hi Mantaray,
Thanks for your comments. I didn't mention it so as not to go ontoo long but until I read about it after my diagnosis I thought I had invented the "brain plasticity" aspect. For several years in my hypochondriac moments I had the idea never mentioned to anyone that I had a slow growing benign tumour causing pressure that my brain was adjusting to every now and again. Turns out I was right there was something wrong going on but it was PD. Use it or lose it applies even more to PWP's