"A Type of Parkinson's that Does Not Respond to Any Medications"...the neurologist said about my dad. Anyone know about this?

"A Type of Parkinson's that Does Not Respond to Any Medications"...the neurologist said about my dad.  Anyone know about this?

My dad, who's about 70 and diagnosed with PD about 10 year ago was told by his 2nd neurologist that he has a type of Parkinson's that "does not respond to any of the medications". He suggested sending my dad to Vanderbilt Research Hospital (I think for possible surgery, which thoroughly scared both my parents). After being diagnosed, we always waited for some RX to make a big difference, at least for a while, but none really did; the PD just consistently gets worse. He's been on Sinemet and Azilect and possibly another prescription. The natural Mucuna Pruriens seemed to help some! But last month he's taken a drastic turn for the worse. Do you know anything about THIS TYPE PARKINSON'S and WHY DOESN'T RESPOND TO RX? Thank you all!

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  • My husband was always told by his doctors that if his symptoms did not improve with the medications then he did NOT have P.D. I guess that is not the case now. They are always learning more as time passes as research is constant. I read this article. I hope it helps.

    everydayhealth.com/parkinso...

    Please be sure your dad's doctor is a neurologist. A regular doctor can not know enough about these types of illnesses.

    God Bless!! :)

  • I an not sure but I think there something called psp? that does not respond

    to medication,

    Maybe you might find something in the archves,

  • Imbanni, thank you for the reply. His Dr. is indeed a Neurologist. I will definitley read the article! Have a good day!

  • My experience in 10 years was finding the right dosage amount. What work for me is a dosage of sinimet 3 times a day along with a product generic name comtan which is suppose to allow more sinimet to get to the brain . recently I added a 4ml patch called neupro which is a rotigotine transdermal system (new to canada ) not covered under my medical plan. I experience about 85% of normal movement which I am quite happy with this regime allows me to have a quality of life worth living for considering the circumstances . Hope this may be of help . In summy tweeking needs to be done to reach the right dosage for you . You are going after a quality of life solution .good luck.

  • thanks, Richardo123.

  • richardo123, you are so right.

    Auddonz

  • I could not take Azilect or Sinemet, yet have tremor dominant Parkinsons. This scenario made me a good candidate for DBS surgery--even at age 77. I am 81and tremor free. I now have balance, gait and memory problems, however. I still take no drugs for Parkinsons--never have--just couldn't tolerate them.

    Best to your Dad--do not fear DBS; learn about it. This community is full of DBS survivors and advocates. Blessings to you and your family as you navigate these uncertain waters--we're all still pretty much afloat---just gotta keep bailing the water!!

  • Thanks, Jash. I will tell my parents all you said. I am glad to hear you are tremor free! Praise God!

  • There is the possibility that PD has been wrongly diagnosed. Anumber of conditions produce PD like symptoms but are not PD. A specialist hospital might produce an accurate diagnosis.

  • My dad's next neurologist appt. is this coming Wed. If any of you on here will join me in prayer for this appt, I would greatly appreciate it. I asked Dad if I may go with him and mom- and of course they agreed....we are a very close family. :) I would like to ask the Dr. to explain more to Dad about WHY he wants him to go to Vanderbilt University Medical Center in Nashville, TN, and WHAT might happen when there. At one appt, the good Dr. told Dad that, since he is not responding to any traditional medications, he would like to send him to Vanderbilt's movement specialists. I truly hope that he and mom will reconsider and go find out what they have to say after they examine and test him....AND I plan to take a list of the many ideas and supplements I have learned about on HealthUnlocked from others with PD. I feel more knowledgeable now about PD and have better questions than the other time I went with him to his neurologist. So I ask your prayers for this visit. Thank you all!

  • I didn't follow up to say that I found out my dad's neuro really does not want to discuss anything homeopathic. Kinda forced him into a corner with tons of questions but could tell he did NOT want to be there! I posted today asking if anyone is seeing a NEUROLOGIST more open to using all types treatment and even knowledgeable in both....IN THE CHATTANOOGA TENNESSEE area or CLEVELAND or CROSSVILLE. He has taken another RAPID DRASTIC TURN FOR WORSE! I cannot help but believe this is abnormal and something needs adjusting, added, subtracted. I think I am going to really ENCOURAGE HIM TO GO TO VANDERBILT RESEARCH HOSPITAL'S MOVEMENT SPECIALISTS. he has never really been helped by ANY medication. His neuro won't suggest he go even though in all this 10 years he has never responed to carbadopa levadopa or really any med at all.

  • Interesting thing, Osidge is our friend w ith PD said the same thing several months ago... I kinda dismissed it. Hmmm.....

    Thank you!

  • That all sounds quite strange rasc

    If he has been diagnosed 10 years didn't he need treatment for most of that time and if so did it work? If your Dad has a Parkinsons plus type condition I would expect meds hadn't helped for most of those 10 yrs.

  • Hikoi, yes, he is on the traditional meds for PD, like Sinemet and Azilect, etc., but they have never helped relieve his symptoms all these years. He's just steadily gotten worse and never experienced that good feeling that a particular med is actually doing something. BECAUSE of this lack of response to PD meds, his neurologist wants to send him to Vanderbilt University Medical Center in Nashville. I believe it to be one of the world's finest hospitals for Deep Brain Stimulation surgery. But even if he decides against such a surgery, it would seem to be beneficial to have some answers. I hope Dad will go.

  • Well that makes sense now rascdoolittle

    And if I had read your first post properly I would have seen you already explain this! Did the neuro give your Dad's Parkinsons type condition a specific name? I'm not sure they do DBS for some of the other PD syndromes, it works best on tremor type PD.

    You say your Dad has suddenly got worse and one of the things I always read about sudden changes is to check is that there is no underlying infection, especially bladder infection.

    Do hope you get some answers soon.

  • Thanks! Tremor is one of the worst symptoms. Lately his whole "insides" feel trembly and that feels just terrible. I will definitely ask my mom if he has had urinary trouble and about a possible infection. I have had many UTI's myself and know they can make one feel awful. Thank you for brainstorming with me!!!

  • My hunch is your neuro wants the expertise of Vanderbuilt specialists and not necessarily for DBS but just best treatment for your Dad.

    And yes PD is 'relentlessly progressive' I'm afraid though the speed is different for everyone. As neuros say, if it isn't progressive it isn't Parkinsons. But sudden decline is often triggered by something.

  • rsacdoolittle, Just found this site which I haven't read yet which might give you some info parkinsonsaction.org/about-... Looks interesting and will read it later on today.

    Auddonz

  • Auddonz, THANK YOU! This is a great website!

  • I still haven't a chance to read it through. Glad you liked it rsacdoolittle/

    Auddonz

  • Hi! Have a look on youtube and Google for Atypical parkinsons or Parkinsons plus syndrome. You will see things like MSA and PSP. these are often diagnosed initially as Parkinsons disease, together with several other parkinsonian types. All the best!

  • iiooh i love chocolate cakewell done for making one

    lol

  • I too have at type of parkinsons that does not respond to any drugs. iaa, 67 and diagnosed 8 years ago. About 4 years ago I had a positive DATSCAN which showed bilateral depletion of dopamine . About 2 years ago my neuro changed his diagnosis too psp owing to a slowness in upward glaze. After some research I found that I have pure akinesia with gait freezing. this is actually a type of Psp. I have seemed to have plateaued out over the last three years.

  • Steph02, thank you for sharing your diagnosis and rediagnosis. It is a rough road to travel, and we are not alone! I will pray for you. Again, your sharing has helped me understand a bit better about PD and PSP.

  • Hi, I was diagnosed myself about 8 years ago and they didn't know why treatment wasn't working so I had some genetic tests done and they were positive so basically what I have is parkonissim which is I think worse than ordinary Parkinson's, ( not sure about that, that's what I have been told) so I have been struggling, but doing okay, lately I had a downfall and my doctor wants to keep a closer look at my progress. Here in my country I seem to be the only one with it, even doctors seem to be baffled, so I go abroad for treatment.

    Hope you find some improvement, all the best, and keep on trying never give up!!

    R8360V

  • By the way family an is correct mine does come under Atypical Parkinson's.

    R8360V

  • Thanks for sharing that R8360V! This info is all so beneficial and helps us know we are not alone. God bless you!

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