I am desperate please help me especially Mikie

Discussion in 'Fibromyalgia Main Forum' started by teller7, Jul 26, 2008.

  1. teller7

    teller7 New Member

    Can anyone tell me if a Parkinson's patient has weakness like a CFS patient. I went to OHSU in PTLD last week and was officially diagnosed by the experts up there with full blown Parkinson's. I get these weak spells when I am stressed too much where I can hardly walk or speak. The only thing I can do is take a clonazepam and and lay down for hours sometimes days. Does this sound anything like Parkinson's to you Mikie? I desperately need an answer here about this. My hubby is very cold about the whole situation and is burned out about drs. Does NOT like having to take me to the drs. Life with him is almost impossible anymore. I know he loves me but being the type of person he is he won't change. He desperately needs counseling and absolutely refuses to do it even if it means I will leave him. Does stree play a big role in how a person with Parkinson's feels? I have thought for 5 years that I have CFS but the experts say the other. God, I need answers right away. The dept of human services wants me to get out of this situation right away for my own good. He does NOT physically abuse me but the mental abuse is there full blown. We've been married for 35 years and I'm afraid that I won't be able to function on my own. These spells are killing me. I guess what I'm asking is are spells like this associated with Parkinson's if you're stressed like I am. Please someone help me.
  2. SpecialK82

    SpecialK82 New Member

    Carol - what a sad story. I don't know anything about Parkinson's so I will hope others address that, but wanted to send you love and hugs.

    I'm sure being in an abusive relationship will impact your health negatively, no matter if it it Parkinson's or CFS.

    I hope you get answers soon - and will find some peace.

    Hang in there.
  3. Missizzy

    Missizzy New Member

    I wanted to respond as I also live in Oregon and have been seen numerous times at OHSU. They don't think I have Parkinson's but some other movement disorder. My symptoms are very similar to yours and I also take Klonopin. I am so sorry about hour husband's reaction. That is just not going to work. You need support and gentle care. Stress will only exacerbate Parkinson's and other similar diseases. I agree counseling seems to be in order. If your husband won't go, you must. I'd like to suggest something that might be of some help.

    I read an article concerning a new support group forming for people newly diagnosed with Parkinson's. The article can be accessed on the The Mail Tribune's website (Medford) and is from July 22nd. I'll paste the last few lines below:

    "The group's first meeting has been scheduled for 11 a.m. Aug. 16 at the Smullin Center, 2825 E. Barnett Road, on the campus of Rogue Valley Medical Center. The plan is to meet the third Saturday of every month.

    No one will be turned away, but the group plans to focus on the specific problems of people who have been diagnosed during the past three years, such as the role of diet and exercise, medicines and helpful books.

    "There's just a lot of ways people can help themselves if they have a support group," Lori Mangold said.

    For more information, call Rosie and Carl Michael at 779-3429, or e-mail Lori Mangold at lori@pawsitivepress.com."

    I'm not sure how far you are from Medford, but it might be worth a shot. The article discusses exactly the feelings of fear and confusion you describe. You might be able to find some help and support there. If your husband is unwilling to go, could you maybe enlist a family member or friend to drive you? The Smullin Center is a large and very accessible building. The seating is comfortable and there are many nice, appropriately lit meeting rooms. There are several nice and inexpensive motels in Medford and some lovely parks. Our weather is cooler now and the smoke from the California wildfires has cleared.

    I will be thinking of you, Carol. I'm so sorry you are suffering. Please let us know how things progress.



  4. Missizzy

    Missizzy New Member

    Carol--Did you ever see Dr. Bryant at OHSU? I was checking back on some of our previous posts and you and I discussed him. I had an appointment scheduled with him and then had to cancel due to a horrible flare. I haven't rescheduled yet. If you did see him, could you post your thoughts on how it went, please.

    Also, did you feel well treated at OHSU? I was so surprised by the rudeness of the doctors and Fellows who saw me at the movement clinic. They actually seemed to take "offense" at my tremors and ataxia. They kept calling in other doctors to look at me and exclaiming that "it didn't look like Parkinson's but sure was something". It was very unprofessional. One Fellow even had the audacity to say that "he'd be sick too, if he had 13 kids". I actually wrote a formal complaint with my GP because of those comments. Just wondering what your experience was.

  5. hopeful4

    hopeful4 New Member

    Hi Carol,

    Here's a big, gentle hug coming your way (((((()))))). I can feel your desperation coming through your post, and am glad that you are reaching out here for help.

    Stress is a big player at any time people are ill, and especially for those of us with chronic illness. It's easy to say that we need to reduce our stress, but not always so easy to do.

    In your situation what I heard you say is that the Dept. of Human Services is telling you that for your own well-being, leaving your husband would be best for you, and that you are being mentally abused "full blown". So your situation does sound critical.

    This is not an easy decision to make and may feel impossible, but there is help out there for you. Have you tried going to counseling on your own, without your husband, that could help.

    Has the Dept. offered their assistance? Have you worked together with someone to develop a plan? There are also non-profit, non-government agencies that help people in your situation. Ask human services to help you with phone numbers.

    Take one step at a time. Small things like stopping to take a few deep breaths and get centered can help, too.

    As for the Parkinson's diagnosis, I only know that many of us here, self included, have gotten misdiagnosed...I don't know your background or symptoms. I do know that after 5 years of CFS/FM diagnosis, and many doctors later, I found that I really had chronic Lyme Disease.

    I see in a past post that you tested negative for lyme. However, the test you took was most likely the ELISA which is highly unreliable. I would urge you to get a second opinion from a lyme literate doctor (LLMD), and get tested with the IGENEX Lab Western Blot.

    The diagnosis of lyme is a clinical one, meaning that a doctor knowledgeable in lyme disease, takes into account your symptoms, your history, possible exposure, and lab work. The diagnosis is not based on a lab test alone, esp. the unreliable ELISA.

    Wishing you the very best,
  6. mbofov

    mbofov Active Member

    I don't know anything about Parkinsons, but I do know that mental abuse is VERY detrimental to your health. My dad never physically abused my mom, but had almost unrelenting verbal abuse. It made me want to kill him. Verbal abuse can be just as damaging as physical. And if the Dept of Human Services wants you to get out, then you know it's got to be serious.

    You will be able to function on your own. I left my husband of 24 years, while I was sick, because he was completely non-supportive of me while I was sick. He had no comprehension and didn't want to understand. It's been five years since we split up and I don't regret it one bit. It wasn't easy, but it was the right thing to do, what I needed to do for my own sanity and well-being.

    You say that you get spells when you are stressed too much - well, I think you answered your own question. It sounds like the stress in your marriage is a large factor in your illness.

    For me to leave my husband, I had to believe that I deserved better, and that I didn't deserve to be treated badly. But before I had that crystal clear in my mind, I was unable to leave him. But when I did realize it fully, it made my decision simple. I really was unable to stay with him any more.

    You say he loves you, but someone who abuses someone else has a very sick way of showing love.

    It's not easy but you have to come to believe that you are worth something, worth saving, and deserve to be treated with kindness, and then do what you need to do to survive.

    You say your husband needs counseling, but I think you might need counseling for staying with someone who is so abusive. You can't fix your husband, but you can change your behavior.

    I know everything is much harder when dealing with physical illness on top of it. That just seems to be life - it ain't easy.

    Take care --

  7. msbsgblue

    msbsgblue Member

    Mikie has left a post here that she won't be here much anymore, at least for a while. Look "search" under her name in search place, you may find her post.
  8. lrning2cope

    lrning2cope New Member

    I prayer that everything will work out. I hope that people will come into your life that will help you sort this out and find a better and safer place to live where you will be supported and cherished. I grew up in a mentally abusive family . Sometimes mental abuse is worse than physical abuse. Take care of yourself. Your husband is only thinking of himself ,so he has enough to keep his selfish mind busy.

    [This Message was Edited on 07/26/2008]
  9. gapsych

    gapsych New Member

    While I do not know much about Parkinson's, I just wanted to wish you well and bump up this post.

    Take care.

  10. tooks

    tooks Member

    Here is just a ray of hope to consider. My doctor just told me that a patient had come to him who had been diagnosed with Parkinson's. He is a "get to the root cause" kind of doctor and wanted to investigate other possibilities. What he found was that the patient's neurotransmitters were totally out of balance and that she had had gut issues for many years without knowing it.

    Apparently treating these conditions "cured" the Parkinson's. I am just starting with this doctor and am in the in-depth medical test stage (mostly from research oriented labs), and then will have a consult to make a treatment plan. I must say, though, that so far he is incredibly thorough and efficient. He also does telephone consults, the first one, of a half hour, being free--so no obligations and an opportunitity to see if you sync.

    Some others here have had good results with him too. If you want to know more, just reply with my screen name in the title.

  11. teller7

    teller7 New Member

    Thank you everyone for your reply's
  12. Lichu3

    Lichu3 New Member

    in my experience but then I don't know what your exam results were. Stress plays a role in a lot of things but I haven't seen it be a huge factor in Parkinson's.

    There is Parkinson's Disease and there is Parkinsonism.

    Scientists don't know what causes Parkinson's Disease really although it is known it is due to a lack of dopamine in the brain.

    Parkinsonism describes symptoms like Parkinson's Disease but has a known starting cause: i.e. certain meds, a stroke affecting certain parts of the brain, etc.

    The typical symptoms of either are put together in the acronym TRAP: Tremors at rest, Rigidity when moving a limb (something the doc tests), Akinesia (difficulty starting a movement), and Postural instability (prone to falls).

    There are also sometimes associated symptoms like constipation, problems swollowing, slurred speech, etc.

    Your docs may suggest a trial of Sinemet (dopamine) -- if you do have Parkinson's Disease or Parkinsonism, you might be able to see some improvements relatively quickly.
  13. Mikie

    Mikie Moderator

    I am so very sorry. I just saw this as I'm not here much anymore. Please know that Parkinson's is very, very difficult to diagnose and can easily be misdiagnosed. The symptoms can mimic other conditions.

    Feeling weak under stress and having difficulty speaking were tow of the first symptoms my old flame noticed early on. The tremor didn't come until much later. Again, though, this can be very hard to diagnose correctly.

    One clue, which seems to be pretty much across the board, is to compare your handwriting today with your handwriting a year or two ago. If it has gotten substantially smaller, that could be indicitive of Parkinson's.

    I hope and pray the doc is wrong. Please keep us updated. There are a lot of promising new treatments now, so don't give up.

    Love, Mikie
  14. Mikie

    Mikie Moderator

  15. Mikie

    Mikie Moderator