I need advice plz...😡

I need advice plz...😡

As some of you know I was diagnosed 3/30. And my neurologist referred me to a Parkinson specialist at Vanderbilt. That appointment was set for 1/31/2018

As unbelievable that is, I received a postcard yesterday , changing my appointment to 5/30/2018. That's 1 year and 2 months after my 1st diagnosis !! I'm kinda speechless. But what to do??

23 Replies

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  • Stay on your med from 1st dx. Parkinson's will wait for your second appointment

  • Recently diagnosed pwp benefit from knowledge early on, i.e., ramp up your exercise now. IMHO, isn't advising passivity like saying, "Don't bother. Nothing matters/helps?"

  • Exercise!

  • Find another Neuro. if you need to. If you are doing okay now just wait.

  • Squeak, wheel.

    Or, if you prefer, fine another doc. Waiting that long to be seen is an outrage!

  • This is the list of Movement Disorder Specialists I found at Vanderbilt and they seem the same except that Dr. Ferluga,my doctor here, is no longer listed there because she is here in Chattanooga. I almost made an appt. with Dr. Fang who prefers patients who are newly diagnosed before I learned Dr. Ferluga was moving here.

    ww2.mc.vanderbilt.edu/neuro...

    I don't think the doctor your doctor referred you to is on this list. Maybe you can pick out a doctor or more than one you want to see from this list and ask your regular neuro to refer you to that one instead of the one you can't see until May 2018. You should definitely see a movement disorder specialist.

  • I guess the name of the doctor you're trying to see is Issacs and he is on the list above. He must be very busy. You probably could wait but it is stressful. Remember to exercise as much as you can while you wait for your appt.

  • Why do you want to see the clinic? Are you uncertain whether you have Pd or what?

    If I was in your shoes, which I am not, and knowing what I do know now, I would immediately start ding some serious walking or biking. Look at mt profile to see what I am talking about. That is the only way I know to do something positive about Pd.

  • Agree. Doing nothing/waiting is a huge mistake.

  • In the U.K. We see PD nurses far for than we see neuros but really it's just a nice chat most the time and a tick the box, see you next year sort of thing with the neurologist. This condition is a slow moving beast and whilst it's dreadful how long you have to wait (because it is scary) it's not going to affect your outcomes.

    In the meantime exercise is king. If you can find somewhere doing PD Warrior (neurological physiotherapist led) that would be a great start. Otherwise cycling or fast walking seem well regarded

    Also, in the U.K. Parkinson's UK run a first steps program based on an Italian program that's a great help. I don't know what the US have to offer support wise but others on here should be able to advise what there is. Use this group and local support groups as they will be far more beneficial to you than any neuro in these early stages.

    Remember you have a lot of good life ahead of you. 2 years in and I mostly love life watching my 2 young children grow. Glad I didn't wait around for miracles to happen and missed it all.

    Good luck

  • NPF has a hot line with trained PD nurses who will answer all your questions regarding meds, issues and general information about PD. Call them ASAP. They will refer you to a competent movement specialist. Do not stress. Not an emergency. Parkinson's will wait.

  • Good advice! For those who live in England, I will be giving a talk in London on 6th September at which I will show people with walking difficulties how they are immediately able to walk normally. If you don't believe it, come along and see foe yourself.

  • Very similarly to the one year wait at University of Florida. I would keep that appointment at Vanderbilt but not sit idle during that time. Agree with the replies suggesting the need for an exercise regimen. Perhaps they have a PA you could see much sooner? Or find another neurologist specializing in movement disorders with a shorter wait time. Perhaps there is a prescription that you should be taking right now that would help you control your PD and enable you to be more active physically? Maybe not? The answer would come from the PA or the other neurologist wishing you all the best

  • I saw three movement disorder specialists that all gave me the same diagnosis. I wouldn't recommend seeing three to anyone, but seeing two is not a bad idea. Keep your original appointment and make another appointment with someone that can see you now.

  • I would do that too--make a new appointment with someone that may be available sooner, but keep the appointment with Dr. Issacs.

  • You might want to try Talene Yacoubian in Birmingham. She is a movement disorder specialist and was mentioned on Michael Fox's site once. I know a man who has had PD for 7 years who travels there to see her. I thought of going there too but learned I would not have to leave town after all. If you saw her out of town Dr. Issacs should not have any hurt feelings once you finally saw him.

    More about Dr. Talene A. Yacoubian

    Neurology

    Vitals

    5/5

    Years of Experience: 11

    Gender: Female

    Her father owns a very nice clothing store in Chattanooga. She may be just as busy as Dr. Issacs though.

  • I'd write a strong letter to the Vanderbilt medical director calling it what it is - malpractice, cc every media outlet, (file a complaint with the) state doctor/medical licensing agency, and your congressmen. Change doctors. This is offensive in the extreme.

  • I had the same problem with duke. First July then a call changing it to November,

  • Fight it -- it's outrageous to have to wait that long. It may not change an outcome but to have a professional expert in your condition on your team is important. That said, do take up exercise, as vigorous as you can. There are lots of options -- fast walking and high cadence cycling have been mentioned and may delay progression, although not for all. There's Rock Steady Boxing with is high intensity and FUN too, some swear by interval training. Swimming, yoga, whatever makes you happy, but do it INTENSELY. It makes a huge difference not only with PD symptoms but also mood, energy level, sleep, and the boost that comes from being proactive. And read this forum -- there are numerous approaches to supplements that may have an effect on symptoms and disease progression. I've found Silvestrov's posts especially useful.

  • Start researching, reading, exercising. John Pepper is a good (IMHO) place to start, then check out Norman Doidge, MD "The Brain's Way of Healing". Sing, dance, be with others. Just DON't sit and wait for the neurologist to "fix" you!

    Herbal supplements (such as Mucuna Puriens) and Excellent food (as medicine) can be very helpful.

    I had the same experience as you as far as waiting for appointments...I'm glad now that I did have that experience, as I'm doing better than I thought I could!

  • I guess I am trying to be too helpful but I just googled the info on Michael Fox about Talene Yacoubian. She really does sound great. Here it is and you might find more yourself if you google her:

    Talene Alene Yacoubian, MD, PhD

    Associate Professor at University of Alabama at Birmingham

    Location: Birmingham, Alabama, United States

    Dr. Talene Alene Yacoubian is an associate professor of neurology and Parkinson’s Association of Alabama Scholar in the Division of Movement Disorders and Center for Neurodegeneration and Experimental Therapeutics at the University of Alabama at Birmingham (UAB). She received her undergraduate degree in biochemical sciences from Harvard College, and her MD and PhD degrees from Duke University in 2001. She completed her neurology residency in 2005 at Harvard Medical School’s Partners Neurology Residency Program (Massachusetts General and Brigham and Women’s Hospitals). Prior to joining the UAB faculty, she was a research and clinical fellow in movement disorders at Massachusetts General Hospital from 2005-2006.

    She divides her time between patient care and laboratory research focused on Parkinson’s disease. Dr. Yacoubian is the recipient of grants from the National Institutes of Health, The Michael J. Fox Foundation, the Parkinson’s Association of Alabama and the American Parkinson’s Disease Association. Her research is focused on proteins with neuroprotective potential in models of Parkinson’s disease.

  • See another dr

  • I think I would do two things. 1) Call the neurologist that originally diagnosed you on 3/30 and tell them what has happened. They might be able to intervene for you or direct you somewhere else. 2) Call Vanderbilt and tell them that waiting 1 year and 2 months for an appointment is astounding. And since it was Vanderbilt that changed the appointment, not you, they should consider getting you rescheduled much closer to the date of your original appointment. This might not do any good, but it is worth a try. (I have to wait 7 months for an appointment with my neuro, but 1 year and 2 months really does sound astounding.)

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