So new!! So confused???

Was diagnosed a year ago at 51. Now I am 52. I started with a thumb that did an electric toothbrush imitation, one caffeine overdose leg and the other leg that sometimes forgets to walk with me. Started on Azilect but tried Selegiline because of the Unaffordable Health Care Act and costs. Bc Selegiline didn't go over well I did my whole denial thing and decided not to go back on Azilect. Mistake but eye opener. All limbs now have tremor and left foot hated walking. Brain didn't work well and had a depressive break down. Back on Azilect, head is better and so are tremors. Wears off at 330. But now I have burning sensation in arms and legs and cramps in toes and foot because of curling up. Sometimes walk on toes or side of foot so it doesn't hurt. Starting on more Meds but as usual waiting on Insurance to get it's Sh*t together. Yes there is a question! LOL All of this is happening so fast, what happen to what the doc said "people live 20-30 years with PD". If all of this is happening within a year what next??? I read this and I feel pathetic because it is not as bad as so many others but as quickly as all these symptoms are coming I don't see anyone can call this a slowly progressive disease.

21 Replies

  • Some report the mortality rate between 2 and 16 years. Some PwP skip stages and go direct to disabled stage. When I was diagnosed, I took the news rather off handed. But after and during my study of this disease, I had my fear and crying occurrence. I feel so lucky and blessed that so far I am fine without medication. If I can hold out another two or three years, the Neupro Patch will be offered in generic form. Presently, $100 per week.

    If I can hold out, I will seriously consider the new, Ultrasound Surgery (non-invasive)

  • Roy re cost of meds this thread may be helpful. Hope so.

  • I tried by entering town zip code (2 towns)

    Best Price

    Discounted Price:


    If someone reading this post has reference, lower cost, please do.

  • Did you try landmans suggestion in the same thread?

    For Neupro users go to for discount card. My cost w/card $15

  • Hi RayLee, can I ask how you were diagnosed and was it a Parkinson's specialist?

  • Hi RayLee..... I send huge hugs !!! we have all gone thru all of this one way or another. Glad you went back to Azilect. I have always called it my "wonder drug" what other drugs are you going to take if and when the insurance kicks in""

    keep intouch please...and good luck with he darn insurance company.....


  • Hi RayLee,

    sorry you're having a bad time of it. The chances are though that you've had PD for quite some time before diagnosis - I know that my first symptoms were non motor ones and preceded my diagnosis by a number of years. If the Azilect works for you I would stick with it - I stopped it for a few days and my internal tremors came back. And if it's wearing off you could consider increasing the dose - search on the forums for other azilect posts - I know one person here has increased their dose. The impression I get is that people who respond well to Azilect seem to have slow progression of their symptoms. There is some debate about whether it's neuroprotective or not.

    I think for me having a very stressful job made all my symptoms worse so try to avoid stress as much as possible. Having a break down may have made everything worse for you. It's easy for me to tell you to avoid stress but it's quite another matter doing it. I had to have some autonomic tests late last year to see if I had MSA (Multiple Systems Atrophy) or Parkinsons Plus and I was a nervous wreck when I went to the Neurologist - he recommended I take some anxiety medication in future when things get bad.

  • I have had Parkinson's for 15 years and it has progressed slowly. I started with Sinemet 25/100 (name brand of carbidopa/levadopa and immediately felt better. I worked at a demanding job for 8 years. In those old days I think most people started on this med. Now people try other meds first but maybe you need "the real thing"

  • Hi RaylLee,

    I was diagnosed two and a half years ago at age 57. At first I was in denial then it hit home and my health declined rapidly. Like you, I was so concerned with the speed at which things were going. I am now on medication which is right for me (I think this can be the key). Please don't give up as it's your body and the neurologists have to listen to you. Do you have access to a Parkinsons nurse? I found that my emotional state had great bearings on how bad my symptoms were. You can't control the fact that you have Parkinsons but try to read up as much as you can on what you can do to help the condition (a book I highly recommend is Reverse Parkinsons Disease by John Pepper)

    A good diet and lots of exercise, if you are able, might help and only read the "positive". I do hope that things improve for you soon.

  • I too was diagnosed at age 51. The entire year before I was walking dragging my left foot and unable to swing my left arm naturally when I walked thought I going insane might right foot was fine. I felt fine except for the symptoms (classic PD signs I found out) later. I was started on 25/100 Sinemet and Azilect. When I took the meds I would have sever painful dyskinesia that would last the entire time to the next dose. Sinemet last 4hours. My neuro cut back to taken half a tablet of the Sinemet every 3 hours up to six times a day he thought the dose might have been too much with Azilect . Things are going wonderful now. When I first take my meds a little dyskinesia but it goes away after 1/2 hour. The other thing to keep in mind is Azilect takes awhile to build up in your system at least a month or so. Here on this website you may not find the exact answer but it opens the doors to information for discussions to have with your health care provider.

  • Your symptoms exactly same as mine except I was 62. Do you also have problem with left side digestive tract? I'm going to ask if I can go on Azilect again. Don't think I gave it a long enough trial.

  • Once in awhile I go through a period of sever constipation but overall the digestive tract is okay.

  • I'm diagnosed 11 years now and am 73. Many ups and downs, but I fight my way back, although at the down times I think that's it. All down hill. Then diet exercise and talking and enjoying what there is to enjoy and I'm doing things I didn't think I could. Find an exercise group and support group and keep fighting! And have fun :)

  • What I find frustrations with is there isn't any clear cut symptoms of this disease to mark progression of it. Every time I experience something new I find myself questioning is the disease progressing, is this even a symptom of PD or simply age . Like you I am a fighter I am determined work through the challenges thrown my way verses just be accepting . I found if anything positive out of PD ( Mom always told me to look for the good out of something bad) is that I am a much stronger mentally . Exercise is huge in helping to keep PD at bay and it doesn't have to be an aggressive regiment. Exercise and simple stretching helps to keep things loose like muscles making movement easier.

  • Yes after many injuries, I decided the gift of PD is MINDFULNESS. Pay attention to every motion or another injury. Injury = setback or progression of PD. NG! haha. Every other day I think, time to start looking for a senior center :P but I am stubbornly hanging onto my independence!

  • You hang in there !!

  • Hang in there it does get better just hard to see right now. I use 100% lavender oil for cramps and drink water. The key is to keep moving and find meds that work. PLUS you need support, family-- friends --doctors you trust. Read my bio I was a mess, still have bad days, but I m thankful for everyday i can get out of bed and move, even a short walk is better than none. Take care better days ahead!

  • Thank you all for the support! Yes I was diagnosed by top Parkinson's specialist in New Mexico. We do not have Parkinson's nurses (I wish!). I have been on Azilect 1 mg 1x a day for 3 months. I have constipation and take 1000-1500 mg magnesium at night. Works well. Just finished up semester at school and have decided not to go during the summer. I would like to get a routine exercise program down. I do feel better when moving but the profs probably aren't going to be conducive to me walking around the class room. As for stress it has been crazy: 3 friends died in 3 consecutive weeks: 2 my age, school finals and I had six classes and trying to deal with telling my family which caused more drama. Will be picking up more meds today to add to Azilect. Will post later.

  • HI RayLee, It might be that you are under medicated and that you are one of those people for whom Alzilect has no noticeable symptomatic relief. 1mg a day is the usual dose by the way, because if it does have some nerve protection effect the 1mg is optimum. It's like plant food, only the right dose will help the plants grow, too much or too little have an adverse effect.

    Be kind to yourself, once the stress is lifted a little and you are the right meds for you things will ease. Lets us know how you get on.

  • Do you have much knowledge about the different types of drugs for PD? I was in denial at first and was told " luckily it's a slow progressive drug". I tried a number of different ones and finally ended up on Mirapex and contined to rapidly get worse. Never really felt it did much and the doctor would increase the dosage when I told her. Was on it for about three years and became so bad I was using a walker and thinking a wheel chair was next. Finally went for a consultation with a Parkinsons Dr., not just a Neurologist. One visit and he said to faze out the Mirapex and start Sinemet which seems to be the one that a lot of people take. Just simply going off the Mirapex improved my shuffling walk, my freeze step, stiffness, etc.. I was suddenly better. He said that Mirapex , taken over a long time loses effect and even makes it worse. Join the Parkinsons Foundation, get their booklet on Parkinsons Medication and read all can about the meds on internet. Don't give up, fight like hell and exercise!!!

  • I started the mirapex and baclofen for muscle cramps because toes and foot curling up and cramping so bad I couldn't walk on it. I already take Azilect. It works fairly well but wears off about 3 pm. I don't think I will be able to take the mirapex as I can barely stay awake on two a day and I am suppose to take 3. Is this something that goes away with time? Or I am gonna need dexidrine to counter act it! My doc is a PD specialist.

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