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  1. Today
  2. Diagnosed at 40 very scared

    Welcome, Debsten. You are feeling the same emotions I experienced after my diagnosis in late 2010. Please give yourself permission to feel and express whatever you're feeling. Ask your MDS for a referral to a psychologist or Clinical Social Worker that is knowledgeable about YOPD. I've been seeing the same Rehab Psychological since eight months after being diagnosed. She has been a tremendous help to me, especially in the first year as I adjusted to my new normal. Depression and anxiety are normal after such life-altering news. Take the antidepressant. You probably won't need it forever. Sending you a big hug! Dianne
  3. Posted this in the Ask the Doctor forum, but just curious if anyone else has had similar experience... Hi everyone. I've sort of been on the neurologist carousel lately so I thought this would be a good place to ask questions, especially since I have about a month between now and my next neuro visit. I'll keep this as brief as possible. I know this forum is no substitute for actual exams, but in the in-between time it would be nice to have another opinion.I'm concerned about the possibility of young-onset PD. I am 32 years old, male, and have a strong family history of PD (maternal grandmother, her brother, her father).Early 2016: Slight finger "twitch" tremor in right hand (index finger), light internal tremors, shoulder/neck achiness and stiffness, leg stiffness and slight shuffle from right legEarly 2016: MRI negative2016-Early 2017: Issues with finger coordination/tremor on right side, neck and shoulder aches and stiffness, stiffness spreading to rest of right side (arm flexibility esp), gait is not noticeably worse, no weakness, loss of right arm swing noticeableEarly 2017: Some urinary hesitancy issues, small kidney stones found, night sweats and acting out dreams beginsSpring-Summer 2017: Stiffness (slightly painful) and shuffle worsens, very tight muscles in shoulders (hard as a brick!), tremor worsens in hand, tremor slowly spreads to leg, loss of right arm swing definitely noticeable, slowness of movement in fingers begins; dystonia in foot (toes completely folded down on right foot, mostly morning or after physical activity); cogwheeling in leg/armFall 2017: Blood tests completed, negative for Wilson's Disease, Lupus, Lyme, etc.; Very Low Ceruloplasmin levels (9 on first draw, 11 on second), low serum and urine copper (just under normal range in urine copper), low Vitamin D; No gastrointestinal cause of low ceruloplasmin/copper (saw gastro for this)Fall 2017: Negative DatScan but very responsive to Mirapex (too many side effects)Winter 2017: Negative MRI, very responsive to Requip (no side effects so far)Current issues-Low Ceruloplasmin, no gastro/malabsorb. cause-Low Serum and Urine Copper, no gastro/mal. cause (taking 2 mg copper per day for past two months, haven't had levels measured since Sept)-Internal tremors more prevalent-tremor in right hand more prevalent, spreading to left-leg tremor more noticeable-dystonia in toes more painful and noticeable-BAD stiffness, especially in right leg, arm, back, shoulders, neck, face/jaw (can lock up if eating something too large)-some muscle spasms-slowness of movement in right hand/fingers-trouble with buttoning/door locks/intricate movements-almost no arm swing on right side, full arm swing on left-drooling out of sides of mouth, some swallowing issues, some speaking issues at times (word searching every so often, but memory ok)-no weakness-some issues with smell/taste (barely any difference between sweet and sour, etc)-negative DatScan in Sept, but very responsive to Requip (within an hour or so of taking it, tremors/stiffness majorly improve)So confused. Neuro is thinking of sending me back to a MDS. Any ideas on what the heck is going on? Especially with low cerulo and copper but no gastro malabsorb. issues?
  4. hi, I’m a 40-year-old female just diagnosed. I’ve had symptoms down my left side with problems with hand control, tingling in fingers and rigidity in my back and no arm swing, slowness. Got rear ended in June and herniated 2 discs in neck, was in cervical collar for a week. Did nerve study after accident and told I had Ulnar Neuropathy in left arm, cervical radiculopathy and carpal tunnel in right. After months of therapy wasn’t improving was having trouble nodding head and very ridgid in back and tingling in neck down arms. In October Neurologist prescribed Sinemet. It really helped but sent me mentally on a downward spiral thinking I had PD. I weaned off it and he referred me to MDS. Symptoms got worse probably from anxiety and depression which I’ve never had before. Spent my time researching trying to prove it wasn’t PD. This of course bought on more anxiety and depression and I lost a lot of weight. Last week had had appointment with MDS, he said he was 70% sure it was PD and would be over 90% if meds helped (which I knew they would after already trying them). He said I could do dat scan but had to wait a month for approval or I could start meds and do one later if I wanted. At that point I chose the meds because I needed some relief and new they would help, I couldn’t take the feeling of not being able to shake or nod my head and I had gone from positive and happy to not finding any joy. I have been on Rytary 95 for a week, and it helps physically but mentally I am worse. To the point that I don’t want to wake up in the morning. I was prescribed Zoloft which I haven’t taken but think I will need to. I have no reason to feel this way, have 2 kids, supportive family and friends. I am so scared, more for my mental health than the PD.
  5. 23 year old female worried about PD

    Ive rethought my answer if you have something other then pd it may be important to get a diagnnnosis early intervention pd not so important although I know very little about juvenile pd except it is very rare goodluck S
  6. Parkinson's patient abusing opioids?

    Hard issue to deal with. You have gotten much good advice. I can say this, I would get well and truly pissed off if my son went behind my back to mess with my medications. I would know he meant well, but I still would be pissed. If my wife went behind my back, no problem as I have given her POA and also told her that she is the final judge on these sorts of things so long as I have been consulted in advance. But then to have Dementia with Lewy Bodies, so I have major conginitive junk in addition to Parkinson junk. Good luck.
  7. Good morning Here it is just 12 days from Christmas ,.But this is a task put before us not of our choosing. As of yesterday the reconciliation panel is meeting .The bill is 479 pages,so far there is 1 page of discussion,lol The plan is a early vote next week Just a few things to know what to expect.Little tax cuts for the middle class,most to wealthy donors, We will be the ones paying for the cuts in at least$25 billion in medicare.not even mentioning medicaid or research money for Parkinson A provision in the house version will allow a flood of dark money to flood the political contributions and also be tax exempt Businesses will be further rewarded to move their factories offshore courtesy US tax payers The list is wish list of losses for the American people If your representative has voted for these cuts please give them a call and voice your objection Make sure they take your name and address Have a nice day John
  8. Yesterday
  9. Welcome to the club

    Superdecooper, Just some info for you. If you do have Parkinson's disease (sounds like you do) most likely your MDS chart will say Primary Parkinsonism, or Parkinsonism. My chart still says this. I asked my MDS about it. She told me that it will say that till after 5 years of history is achieved. She said they do that incase you develop PSA, MSA, or one of the other Parkinson plus syndromes. It still allows them to treat you with proper medication. Till they have a definitive way to test for just Parkinson's they have to use this method. Food for thought. Blessings
  10. Welcome to the club

    Superdecooper: Now you are an ideal candidate for vigorous exercise! Start boxing, or biking! We look forward to seeing you not progress!
  11. Welcome to the club

    Hi Gang, I thought I'd post a short note on this forum. Following a positive Datscan two weeks ago, my MDS diagnosed a dopamine deficiency, with very early onset of PD symptoms. The MDS said my mild motor issues, including some with a psychogenic overlay, don't rise to the level of full blown Parkinson's disease. However, the non motor symptoms definitely raise the prospect of PD, so he's starting me on Azilect later this month in hopes of keeping me from developing into Parkinsons in the coming years. I'll get another Datscan next year, but he expects that will also come back positive for PD. I'm not sure how you can have a lack of dopamine causing a resting tremor, apathy, right side stiffness, insomnia, night sweats, vivid dreams and kicking, diminished sense of smell, painful dystonia and small handwriting, reduced arm swing and dropping things and not have PD. But, I'll go with the diagnosis for now as long as the Azilect begins to address all that in the next three months. Looks like we caught this early and might have a chance to head things off. So welcome, or something. If anyone has a similar story, I'd sure like to hear it. -S
  12. 23 year old female worried about PD

    I wouldn't even worry about little things even if you do have it. Early treatment just means an expensive medical treatment begins. I look back and know I had Symptoms in my 30s that I can recognize or remember. Even if I did have it earlier, I am glad I didn't have tis diagnosis hanging over my head. When I was diagnosed in my 40s, I was happy to know I could find relief and help. My symptoms seem to "stair step" over time. Maybe because I would fight it, then couldn't anymore. Yet still, I am working with 3 kids at home.
  13. 23 year old female worried about PD

    Realy if you have pd all medical science has to offer is symptomatic relief it will become clear if you a pd or not that being said, medical science is very good at that syptommatic relief (although drugs can have side effects) what I'm suggesting is consider yourself a person with stmptoms forget about the labels
  14. what do you do for fatigue

    I'm now on a vsmall dose of rytalin insurance wouldn't pay 4 nuvigl I don't feel drugged but I often get through the day and say "whatdouknow I wasn't tired at all today" hopefull it will last
  15. Caretaker tip

    Indeed it is lonely and life changing. I miss my husbands company very much, he is in bed most days, the exhaustion giving him no choice but to sleep. He also has Vascular dementia, and severe Gasteoparesis. When he is awake and alert I take advantage of it. I will post tips as I find out thru trial and error what works. I appreciate you all, the support really helps.
  16. Hypervigilance?

    I of course don't know do you have a neurologist you trust and has known both of you a while also is he taking meds
  17. Caretaker tip

    Caregiving is a challenging and lonely job—a job most of us don’t have training for or even experience with. As a result, we find our way through determination and inventiveness. If anyone has helpful tips to pass along, I would be ever so grateful.
  18. Last week
  19. What caused your Doc to suggest DBS?

    Yes, boy did I mess up thinking "I'll be home in a few hours". So I always keep four days of medications with me in my backpack(keep hands free). DBS allowed me to cut back on medication to about 1/3 of what I had been taking.
  20. Caretaker tip

    I just shopped for Cuddle Duds today, they had throws but wasn’t interested then. I will return to check them out further. Thank you!
  21. Promising trial from Down Under

    Bad news from the clinical trial. This one failed. https://stockhead.com.au/columnists/whats-next-living-cell-failed-clinical-trial/ Chairman’s Address to the 2017 Annual General Meeting We are all extremely disappointed that the outcome of the Phase IIb trial of NTCELL® for Parkinson’s disease has not shown a statistically significant difference between the patients who received NTCELL and those who had sham surgery. I will talk about what those results mean for the future of the company in more depth shortly, but to set those in context, first I’d like to highlight some of the activities from the past 12 months. http://www.lctglobal.com/news/asx-announcements
  22. Estimados usuarios, En un estudio recientemente publicado en la revista JAMA neurology (JAMA Neurol. 2017 Oct 30.) se estudio el efecto benéfico potencial del uso del ultrasonido talamico concentrado para el tratamiento del temblor refractario en pacientes con enfermedad de Parkinson. Estos eran pacientes con temblores irreducibles con medicamentos. Esta técnica ha sido recientemente aprobaba para el tratamiento del temblor esencial y en este estudio inicial demostró que la terapia es efectiva comparado con placebo. El estudio incluyo 27 pacientes que recibieron terapia con ultrasonido unilateral con un beneficio alrededor del 60% comparado con un beneficio del 22% en el grupo tratado con placebo. Se reportaron efectos secundarios en un tercio de los pacientes. Adormecimiento de las manos o la cara, así como problemas de equilibrio fueron los más comunes. Este estudio es preliminar, pero sugiere que el uso del ultrasonido puede ser una alternativa en pacientes con temblor refractario en la enfermedad de Parkinson. La seguridad y eficacia a largo plazo de este procedimiento tiene que ser valorada en otros estudios, así como determinar quiénes son los candidatos adecuados para el procedimiento. Además, los riesgos y ventajas del procedimiento deben de ser comparado la estimulación cerebral profunda. Por favor mandenme sus comentarios. Saludos, Adolfo Ramirez-Zamora
  23. Caretaker tip

    Another tip. Because DH is lying on one side or the other most of the time, his ears are at risk for compression sores. I have a plush throw that I put over his pillow to cushion his ears. It washes easily and has been effective. This is not minky. Minky sheds too much. It is a soft plush—maybe like a fleece, but I call it plush. It is soft and cushiony. My daughter says they are popular as throws and there are a lot of them in the stores.
  24. I have always heard that an ounce of prevention is worth a pound of cure. The purpose of this DOD funding is for the evaluation of the capability of the Burn Pits used by DOD as a means of waste control in combat locations. And a direct result of the rather large number of veterans who have a concern of the adverse health outcomes of the exposures of the Burn Pits. Due to my own deployments in the Gulf War zone, I know everything including the kitchen sink is thrown in the Burn Pits. This even includes things such as solvent soaked rags used in the repair duties of our highly mechanized military equipment. One of which is a solvent trichloroethylene, commonly known as TCE. This solvent is the same solvent that was associated with Camp Lejeune veterans with Parkinson's Disease. The National Academy of Sciences and the CDC, subcommittee ASTDR, concluded that the medical and scientific evidence of the capability of TCE is sufficient to warrant service connection for PD. The mysterious adverse health outcome of the Gulf War, commonly known as Gulf War Illness, is defined as a cluster of chronic signs and symptoms, with no known etiology. For those on this forum I know that you can see the undeniable similarity between this definition of GWI and PD. Parkinson's Disease has been a highly anticipated future increased prevalence of PD among Gulf War veterans. This being the conclusion of the GW Research Advisory Committee, or RAC. The RAC has been steadfast in the suspicion of Parkinson's Disease ever since. Being that I have GW Service and YOPD, I have read every piece of research available regarding GWI and PD alike. I have to say that after reading this research and the associated signs and symptoms of both, I find it extremely difficult to distinguish between the symptoms of GWI and PD. In fact even the discussion of the capability of TCE to cause PD, in regards to Camp Lejeune, specifically determined that the neurological signs and symptoms, described by the Institute of Medicine, or IOM, as published in the Gulf War IOM vol 2, Chapter 7, can be PD. However in subsequent IOM reports the conclusion has been that until the Gulf War veterans are at least 60 years old, we will not be impacted by Parkinson's Disease. Everyone on here knows differently. The emerging research for GWI and PD, appears to me to be headed toward a crash course at a rapid pace. The GW IOM vol 2 APPENDIX D, is the DOD confirmed list of known toxins associated with Gulf War Service. This list includes TCE and all of the same toxins associated with Camp Lejeune as well. The VA website specifically states that "MANY" US Military members are routinely exposed to these as well. TCE is a solvent cleaner/degreaser. This indicates that "MANY" veterans have been exposed and are an increased risk of developing PD. I have been able to establish contact with many other veterans who deployed to the GW, and have a confirmed diagnosis of Parkinson's Disease, as well as even active duty military members, who are currently in the process of being discharged from the military for PD. The common denominator being TCE exposure. This to me indicates that TCE is the Agent Orange of our time. The military is not the only source of TCE exposure according to the ASTDR, who has the responsibility of determining the health outcomes of the 1900+ super fund sites, of which TCE has been identified at over 1100 of these sites. Although I and many others have made the connection between in service exposure to TCE and PD, the VA has routinely denied service connection disability for PD, except for the Camp Lejeune veterans. This is a blatant systemic discrimination against those who have not been afforded the same "Honor and Care" as the Camp Lejeune veterans. The VA PD CONSORTIUM CENTER, a speciality clinic within the VA health care system has determined a set of criteria for proving a toxin causes PD. Many of the toxins associated with Gulf War Service fits the criteria for proving toxic induced PD. I have submitted a proposal for new legislation regarding the VA and PD. To the dismay of Secretary Shulkin, if this legislation becomes law it will open many doors for service connection, as well as potentially increase the DOD/VA funding for PD research. I ask that if you feel like this is a worthwhile cause you would like to support, please call your legislative representatives and ask them to work with the staff of US Senator Kennedy, US Senator Cassidy and US Congressman Johnson. Here is a link to the proposal with the links to much of the information I have discussed. https://myjourneywiththeva.blogspot.com/?m=1
  25. Caretaker tip

    Pressure sores cause me concern too. Hubby doesn’t have any now, but sleeps so much I am vigilant. He had MOHS surgery in January on his ear requiring cartilage removal. It didn’t fully heal until October. Cartilage is hard to heal normally, his sleeping so much contributed to slower healing. Excellent advice that I will file away if ever needed again.
  26. Restore-gold

    I have heard this product works well in early stage parkinson's (stages 1-3). It has shown little success in stages 4 & 5. For the first few weeks on it your symptoms usually worsen as your body becomes used to the product. After that, the symptoms usually get better. I have only seen a few studies on it and they do seem positive. It may be worth a try. I hope that helps and please keep me posted.
  27. Just diagnosed at age 40

    Look into exercising that has gentle stretches. Sometimes being so tight can be painful. Ask the doctor formun would be good too. You may benefit from physical therapy. I do a program called PWR (www.pwr4life.org )Physical therapists and athletic trainers are certified in it. keep moving!!! LAD
  28. Just diagnosed at age 40

    Hellow Kelly Ann, It must be difficult to be taken as a drug seeker when you know there is something wrong and nobody understands what the problem is. A good thing you changed primary doctor and found a good one. It takes time to adapt to meds, some people have problems, others don't. Hang in there, your body will eventually adjust. The pain and energy issues are often linked to undermedication. But I am no doctor, so I would suggest you submit your question to Dr Okun in the Ask the Doctor part of this forum. Also, one member of this forum is a Doctor and a person suffering from Parkinson's. Her name is Christie. It's been a while since we last heard from her. If she reads this, maybe she'll take time to provide suggestions. She is very knowledgable and helpful. She is a young-onset as well. Take care, mireille
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