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Friday, December 18, 2009

Day 3285

It's strange to be starting this account so late in our journey with Parkinson's disease because so much has happened, so much drama has already unfolded in our lives. But I was inspired by the movie "Julie and Julia" that I watched last night with my ailing husband and thought, if nothing else, this could be an outlet, a kind of catharsis, for me. In it a main character starts a blog to share with the world her cooking adventures and reaches out to many. Simple as that.

I chose the movie"Julie and Julia" for a reason. When making a selection I usually do so with consideration for Michael's tastes which run to thriller and adventure films. I'm quite a fan of such films myself so it is never a sacrifice to do so. I often save the more sensitive films for my own viewing, knowing that Michael would usually be bored silly.

But that was in the past. Michael is now into year 16 of this disease. Diagnosed in November 1994 I have calculated that we are roughly 3285 days into this wasting disease. That is a very rough estimate since doctors usually add a couple of years onto the date of diagnosis because most patients have been displaying mild symptoms for up to two years before seeking help. That was certainly Michael's situation. So 3285 days is a very conservative estimate of the days we have been living with this disease. More about that to come but first back to the movies.


As I said "Julie and Julia" wasn't our standard viewing fare but of late, Michael's Parkinson's symptoms have escalated rapidly, and not just the very debilitating physical symptoms.  His mental health has suddenly deteriorated to the point that he is very susceptible to visual and auditory influences;  films that are filled with action, violence and angst now cause him great consternation. In fact they can make him crazy with fear just like a young child watching a frightening film, unable to dissociate fact from fiction. So films like "Public Enemies" with my favourite Johnny Depp had to be scrapped halfway through when I saw Michael rocking back and forth in his seat, his face buried in his hands. As usual he said nothing of his anxiety but his body language spoke volumes. The movie went off immediately, as soon as I woke up long enough to take notice. The film was obviously not that thrilling for me.

So we are now at the point in this disease where my poor dear husband must be monitored like a small child whose mental and physical well-being are dependent on good care. It hasn't been a sudden arrival at this stage but a long arduous journey marked by dramatic crises along the way. The story of our lives together with this disease I hope to bring to your home. Be assured that it won't be a tragic tale but I hope one of grace, humour and love. We are all struggling with life's trials in one form or another. Ours just happens to be well mapped out with a vast store of literature available on the subject. I hope to bring it off the pages of the medical journals and into the realm of the ordinary.

6 comments:

  1. Dear Claire, I will be following your postings. You have been a kind friend to my family and to all the people touched by your generosity and charitable work. I know that your faith and the people whose lives you have touched will be supportive. If I can do anything, please let me know. Dirtwitch's Mom

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  2. Anxiety disorders are a unique group of illnesses that fill people’s lives with persistent, excessive, and unreasonable anxiety, worry, and fear. They include generalized anxiety disorder (GAD), obsessive-compulsive disorder (OCD), panic disorder, posttraumatic stress disorder (PTSD), social anxiety disorder (SAD), and specific phobias. Although anxiety disorders are serious medical conditions, they are treatable.
    An anxiety disorder and a co-occurring chronic pain disease can make a person’s health more difficult to treat. But a variety of treatments and lifestyle changes can offer relief. Possible health complications are noted below:
    •Increased disability or reduced functioning
    •Poorer quality of life
    •Poorer response to treatment
    •Poorer treatment adherence
    •Increased perception of disease severity
    Chronic pain sufferers who also have an anxiety disorder may have lower pain tolerance or a lower pain threshold, this indicated findrxonline in article. People with an anxiety disorder may be more sensitive to medication side effects or more fearful of harmful side effects of medication than chronic pain suffers who aren’t anxious, and they may also be more fearful of pain than someone who experiences pain without anxiety.

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  3. Anxiety and dementia are common in advanced Parkinson's Disease. The Exelon patch, commonly used in the treatment of early Alzheimer's Disease, is now being used to treat early dementia in PD patients. In Michael's case it was ineffective.

    It is believed that the dementia can be caused by the toxic overload of medications in the system so sometimes a withdrawal of most of these drugs helps to lift the cloud of confusion, hallucinations and delusions. In Michael's case this did not work either.

    But I have just read a new article released in January 2010 that shows that rapid withdrawal of the dopamine agonists like Mirapex can cause withdrawal symptoms mimicking cocaine withdrawal symptoms. Michael's doctors have, I believe, played around with his medications in a rather shockingly cavalier way and I wonder if that rapid withdrawal of many of his drugs (Amantadine, Mirapex, Comtan) may have contributed to the rapid descent into psychosis that he experienced.

    The only treatment so far to even touch his psychosis is the drug Clozaril, usually used to treat difficult cases of schizophrenia, It is the neuroleptic drug of choice for PD patients because it is less likely to cause a worsening in the PD symptoms that the other similar drugs can cause. It took many weeks for Michael to stabilize on this powerful drug, many weeks of extreme lethargy and a worsening of all his Parkinson's symptoms but I am seeing a big improvement the past few weeks. He is awake more and generally more alert.

    As for the anxiety the drug Clonazepam has been very effective. I have also noticed that Michael's anxiety starts to increase around nightfall every day and corresponds to the "off" cycle of his Parkinson's meds. Sometimes I only have to give him his regular PD meds, wait up to an hour and the anxiety disappears. Anxiety is now a fact of life for Michael but I am learning the patterns and what might trigger a more severe attack for him, requiring more intervention with medications.

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  4. I just found your blog and will certainly be reading (from the beginning). My family is also dealing with Parkinson's and all of its ugly cohorts. My mom has had the disease for about 10-12 years. My father is her sole caretaker. Thank you for sharing your experiences. - lea

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  5. Thankyou for this blog. My husband is in his 17th year with Parkinson's and now has early dementia. I also, am his sole caretaker and at times feel very isolated and alone. I have read every word you have written now, and over the past few months have been able to accept my feelings of annoyance, anger and frustration without guilt.

    It feels good to know that I am not alone. Thankyou again Claire.

    Barb

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