Glad to Be Here

Hello all,

My name is Chris, and my fiancée's name is Lilly. We live in the Bronx, New York with her father, so we have a great support system. We'll also be adding a home attendant to that roster in just a few days, and we're keeping our fingers crossed for a great match on the first try. She's twenty-six and is diagnosed as having Parkinson's Disease; though we both have our doubts about that. It's not that we don't think it's Parkinson's, but it appears to be more of a neurological hodgepodge. Either way, the bottom line is that it's severe enough to prevent her from keeping a regular job or attending school. Anyway, I just wanted to express my excitement about discovering this website. I already came across a few very helpful threads before signing up, so I'd like to thank you all in advance for any tips and guidance you may bring into our lives. :)

19 Replies

  • Very young to have advanced PD. There is hope I am 62 9 years with PD and have improved my life 100% with the right meds and exercise and a doctor that listens and willing to let me adjust my meds as needed.

    If you have read many post on this site no one says exercise is bad. So listen to your doctor but most of all listen to your body. I live a full life with no restrictions.

    Good luck

  • Chris here. Thank you very much for your response. Yeah, we're working on figuring out what's right for her. Going to be trying out Zandopa tomorrow. Hope it goes well.

  • The drug, already approved by the FDA for cancer treatment, improved cognition, motor skills and non-motor function in patients with Parkinson's disease, the university researchers reported.

    Note: earlier/sooner FDA approval as it is existing drug

    "To my knowledge, this study represents the first time a therapy appears to reverse -- to a greater or lesser degree depending on stage of disease -- cognitive and motor decline in patients with these neurodegenerative disorders," said Dr. Fernando Pagan, an associate professor of neurology.

    One patient confined to a wheelchair regained the ability to walk and three others individuals who were unable to speak before the trial were able to conduct conversations. However, the researchers noted that larger and more comprehensive studies and trials would be required to gauge the drug's true potential impact.

    "The use of nilotinib (AMN107, trade name Tasigna), in doses much smaller than are used to treat cancer, which is up to 800 milligrams daily, was well tolerated with no serious side effects," Pagan explains.

    For the trial the doses were kept between 150 and 300 milligrams daily, he added.

    According to the researchers, one of the reasons for the trial's success was that Tasigna was able to penetrate the blood-brain barrier more effectively than existing Parkinson's drugs. Moreover, they are already planning larger clinical trials with the drug for Parkinson's and other diseases including Alzheimer's.

  • Ultrasound surgery for PwP

    Baltimore, September 1, 2015—University of Maryland Medicine (the University of Maryland Medical Center and the University of Maryland School of Medicine) and its Center for Metabolic Imaging and Image-Guided Therapeutics (CMIT) has begun to use MRI-guided focused ultrasound on a deep structure within the brain related to Parkinson’s disease – the globus pallidus.

    In the first clinical trial of its kind, researchers from the Departments of Diagnostic Radiology & Nuclear Medicine, Neurosurgery and Neurology at CMIT are using magnetic resonance imaging (MRI) to guide ultrasound waves through the intact skin and skull to the globus pallidus. The University of Maryland is one of only two sites in the United States to offer this treatment to Parkinson’s patients.

    Source: University of Maryland Medicine Tests Novel Treatment for Parkinsons | University of Maryland Medical Center

    University of Maryland Medical Center

    Follow us: @UMMC on Twitter | MedCenter on Facebook

  • Hi RoyProp,

    Just a cordial suggestion from someone who greatly appreciates your contributions to this forum.

    Your posts are very interesting and informative. But you sometimes copy-and-paste info very "abruptly," i.e., without an explanation of any kind. In my opinion, the value of such posts would be much enhanced if you expressed the connection you intended with the thread at hand. For example, in the present case, it would be very considerate of Chris and all your readers to commence your post with words such as " Hi Chris, Welcome to this site. The following info, on the latest therapies, may be interesting to you." Without an explanatory remark like this, you throw your readers suddenly, without warning, into the deep end of the pool. They are bound to be somewhat perplexed concerning your intent.

    Would a smooth segue into the matter at hand be too much trouble? Are you mindful of how your posts come across?

  • re: Are you mindful of how your posts come across?

    I am frequently attacked for my comments on prognosis as being too factual and realistic. Negative! Some prefer to live in dreamland.

    The prognosis posts are not my experience but the report of researchers and neurologists.

    re: Would a smooth segue into the matter at hand be too much trouble?


  • I gather that you feel that the info you provide "speaks for itself" and does not need any personal comment by the poster--no remarks explaining the why or wherefore of the post. Fair enough, that's a legitimate viewpoint, though I may not agree with it.

    By the way, I did not criticize any of the content you have posted, or it's tone (optimism/pessimism, etc.) My concern was solely with the manner of presentation, and I thought I was making a constructive suggestion.

  • So you're looking for help in dealing with a "home attendant" (for a non american does that mean she's looking after Lilly's Dad?) is that right?

  • No, the home attendant will be there to stay with Lilly while her dad and I are at work. Luckily, I work right near home, but my manager has become far less understanding about allowing me to move my lunch and break around as needed in case Lilly feels an episode coming on. Her PD isn't really a tremor or balance issues or anything like that; it comes in surges. So she could be fine for hours, but when an episode hits it's completely debilitating and she needs physical assistance to position herself on a chair, bed, or couch and pull her arms and legs out to relieve the pain of the vigorous shaking.

  • Welcome Chris and Lily. Hope the community can benefit and support you both. Good luck on your journey.

  • Thank you very much. :)

    - Chris

  • I was diagnose with Parkinsons last December, but I carry on as I did before. I joined the local PD club and l have learned a lot talking to other members. Exercise everybody says is good, so I do Tai Chi,swim and long walks around London seeing the museums. Just got in from a walk , now watching football on the telly. albert

  • Chris, please check out the book "Parkinsons Diva" by Maria De Leon, MD. The author is both a neurologist who treated people with PD and a patient herself. The book specifically deals with early-onset PD in female patients.....and the very wide array of "hodgepodge" symptoms you describe with Lilly. Early on-set PD is often misdiagnosed as other illnesses or "nothing at all." (I went to 3 different neurologists who told me I definitely did not have PD because my tremors "weren't the right kind." The only definitive test of which I am aware - which finally confirmed PD is a DAT scan.......which showed the unambiguous "lights out" in the substantial nigra of my brain.)

    Good luck to you and Lilly.........and check out the book.

  • Thanks so much for the recommendation. Good thing I work at a library. I should be able to order that with no problem. :)

  • Dear Chris and Lily. The PD diagnosis is probably true if your doctor is a Movement Disorder specialist (D.O.) They are accurate 90-95% of the time. My D.O. just last week diagnosed a 21 year old, and at a PD conference I met a lady who, with her brother (2 our of 5 siblings) was diagnosed at 15 years old.

    I have created the most complete Symptoms List (100+) that can help trace the PD progress, help communicate with your doctor, keep electronic records, and in effect, give you guys some 'power'. This Excel form allows you to realize when a symptom goes away, track drugs when you first start taking them, explain to others about PD, and have a 'severity scale' to compare. Note: When I first started sinemet, I did an assessment and 2 weeks later did another one..... 12 different symptoms had improved by 10% - 25% - 35% and 50%. I would have never remembered the info without the 'list'.

    If you would like this form, or anyone else reading this replay, simply e-mail me, and I will send both a 2 page and 3 page Symptoms form. In the subject field at the top of your e-mail, simply put: Symptoms

    My e-mail is:

    The very best of luck to both of you. There is lots of HOPE on the horizon, so don't give up.

    PS Exercise is one of the non medical methods to extend the quality of life. The other thing we can do with PD is to constantly keep our mind learning new things. These two thing can be done at no cost.

  • Oh no, I didn't mean to sound like she was doubting her doctor. We just both feel like maybe this is an unidentified strain of PD, because there seems to be no one else who goes through the type of episodes that she does. It's not consistent symptoms that last all day, but rather violent shaking episodes lasting anywhere from a half hour to three hours that include dystonia (mostly in her arms) and a lot of joint, muscle, and tendon pain.

  • Sorry to hear that ...such a shame at such a young age. ....wishing you the best of luck with this difficult problem

  • Thank you very much. That means a lot.

    - Chris

  • Hey! I'm 39, just diagnosed and I saw that you're going to start on the MP. So am I!

    It'd be great to keep in touch and share ideas. Thanks! H.

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