I've been hoping that this subject would be brought to light sooner than later. I, for one, have had PD for twelve years. At every turn I seem to hit brick walls. Insurance, no coverage, SSDI, Disability, Neuro.
seemed to push every agonist RX on me w/ horrible side effects leading to bad things worse than the PD symptoms. Being honest, dear friends, even with a loving family and network of friends including the PD online groups. I've been to a dark place several times. And it's very private and oh so deep. I spoke with my Neuro. and got BS in return. PD causes every part of my life to be distracted. From my waking breath
until I go to sleep PD has control of my body and my thoughts are fractured. My life is like a lifetime perfectly assembled puzzle coming undone. More and more. My heart is broken for Robin Williams and the family he leaves behind. The mountain of painful battles he carried on his shoulders and the PD DX he kept private toppled that mountain of pain and the end was his only escape from the pain. Oh, sweet Prince!
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MGirardi
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I am intimately familiar with that "olde friend" depression. Many years ago I was severely depressed. I eventually had a full nervous breakdown, another "olde friend". Now (dx two years earlier w/ P) I can understand what RW experienced mentally.
Thoughts fractured!? Hmmm... your mind seems far more intact and aware than most "normal" people. It seems sometimes that as some abilities falter, others tend to sharpen. Your ability to appreciate the loving family and the network of friends in your life (the pleasant things) while feeling compassion for the fate of those like Robin Williams (the less pleasant things) lends some credence to the notion that the degree of happiness we experience depends largely upon the things we choose to focus our thoughts and energies - we must choose the pleasant things.
Very astute observations. I agree. We can choose to focus on our blessings or allow ourselves be overwhelmed by our challenges. When we believe that we have no choice, then we become disempowered and become victims.
FOCUS ONT EH GOOD THINGS IN LFIE AND THEN LIFE CAN LET UYOU DOWN IN ABIG WAY BTU IT IS POSSIBLE TO COPE ( I SUFFERED SEVERE DEPRESSION FROM MY LATE 20S T0 LAT E50S BUT AM NOW FREE OF IT IWTH THE HELP FO A LWO DOSE ANTI DEP. AND THE ANXIETY IS SITLL BAD WITH THE PSP AND NOT KNWO IGN WHAT HTE DAY WILL BRIGN RE FALLS CONTINENC E PROBS ETC ETC BYT I AM COPING PRETTY WELL I THINK
Second of all, fire your neuro and get a new one. If the new one is no better than the old one, fire the new one too. Some of us have gone through half a dozen or more neuros before finding the right one. And one that is right for me may not be right for you. Be patient. Churchill said this about war, but it applies equally to our war with PD: "Victory is never final, defeat is never fatal, it's courage that counts."
Churchill called his depression the Black Dog and that dog was with him all his life. There's a book on Abraham Lincoln on how his history of dealing with his depression, helped him to persevere and get the North through the Civil War. In like manner, we can persevere.
I think those who are dealing with PD Depression need to go outside of PD circles and look at sites that deal with just straight depression.
WebMD has some great do-able advice that I find helpful. Also NAMI.org (National Alliance for the Mentally Ill) helps, too. Though it's often for family members, for example its excellent "Family-to-Family" program, it does have articles on depression that are helpful. My husband (the patient) and (the caregiver) are both on anti-depressants. His going on SSRI's coincided with some med changes (he went on Carbidopa/Levodopa), and I see great changes. It's very heartening to see!!
But for me, life has always was a slog, especially before I got on anti-depressants. Therapy helped me a lot, esp. when I started the meds. The two together potentiate one another, I think. So don't hesitate to get a therapist.
Coping with PD is a lot and we can get overwhelmed, esp. for many people in winter. Go for a walk every morning will start your day right (the natural light, the fresh air). Or do yoga, etc. I have done 'the dance' with depression since I was a kid, but now I want to push it into the corner and not let it take over my life anymore. Keep working on your mood and affect. One can make progress and learn more about yourself and your depression. Get into a support group, like American PD Association helps to found and mentor. It's work, esp. if you are still working. But it can be done. Life can be better. You can and will experience great joy again.
MGirardi, there is a lot of grace in your words. You've been fighting the good fight for a dozen years. I was just diagnosed two weeks ago. It's a scary view from here. And what happened to Robin Williams probably struck fear into a lot of us and made us wonder whether if there by the grace of God go I? But you are so articulate and so aware of sources of strength and resilience for you, like your loving family and friends that I hope you can always make the choice to turn to them in those dark moments. I have the feeling that you are a person with many gifts. We are NOT our Parkinson's disease, right? We are US. That's what I'm telling myself now, as I'm afraid people will only see me in terms of the condition now.
Is this my Leilani from 90265? My dear kind and loving friend I wish nothing but the best for you. Get a Neurologist you trust and do not use dopamine agonists because the side effects are not good. Sinemet has
become my friend and cannabis too. Never be afraid because you are not alone. Parkinson's does not damage your heart. It will never take your soul. Life will still be beautiful. One day at a time. Please contact me directly if this is my Leilani from 90265.
Hi MGirardi. I share your thoughts and comments. I feel that we Pd sufferers are just cash cows for Big Pharma, and to some extent, doctors. They are often too busy to give time to listen to us. The medical books say do this or that, and that is what they tell you. Next customer please! Yes they are busy, but we pay a fortune to get their professional help, but is their help always professional? I only raise this issue because I want Pd patients to realize that they have to often HELP THEMSELVES! I have been exceptionally lucky, having been able to reverse many of my symptoms. That did not happen because of any doctor or medication. It happened by sheer coincidence. I have had severe back problems since 1960. The best way to deal with back problems is to exercise and strengthen the core muscles. I did that for 30 years, with good results. When I was diagnosed, I had been suffering with many Pd symptoms since 1963, and was being treated for each symptom separately, not knowing that they were all related to Pd, which I did not know I had. Only when I changed my exercise from the gym to fast walking, did my symptoms start to improve. At the time of being diagnosed with Pd, I gave up my high-powered job and got rid of an enormous amount of STRESS. Stress indirectly causes many health problems! 2 years after diagnosis, when I changed from the gym to the walking, my symptoms immediately started to improve. I was not just walking, I was walking as fast as I could. That was not easy, as balance and coordination made it very difficult and somewhat dangerous. I did have several falls, but because I was so bodily fit and my bones were still in good shape, I never broke anything. These two factors, the hard walking and the lack of high levels of stress, together with the MAO-b inhibitor medication were, in my opinion, the reason for my improved health.
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