We'd have all been there for you. All pwps together with you. You would not have faced this alone. We need too redouble our efforts to improve the quality of information about this terrible disease, but that you don't have to give up.
It may open up people's eyes to the lives we lead, the fight we face every single day. Hope mjf makes a good statement.
Robin Williams 'had Parkinson's' bbc.co.uk/news/world-us-can...
How awful, I can see why he might do this though, if it affected his cognitive function which the World knew was Incredible. Also he was the actor that played the Dr. in Awakenings so he knew about Parkinsons.
How very sad that he felt he needed to do this.
How sad. Health issues seem to come in bundles. Like Robin I had heart surgery 15 years ago. Three years later I had surgery for prostate cancer. I wound up with A-fib and chronic heart failure and then a diagnoses of PD. Throw in a defibrillator and a hip replacement and I could be a poster boy for the medical profession.
When I had my first stent put in before my open heart bypass, I was in the hospital for 3 days. I had a bout of depression. I never experienced anything like it before in my life. It was like a black cloud rolling over me and I couldn't do anything about it and it was so scary.
Before my bypass surgery people told me I would have depression after the surgery. I told them I wouldn't because I had my prior experience with it and I didn't have it. Mindfulness mediation helped me at that time.
It seems to me that unless you have had some depression, a person really doesn't know what they are talking about. It's like the blind man trying to explain the color green. Some folks toss around the word "depression" like it was a tooth ache. Those of us who have experienced it know differently.
No matter how the best Doctor describes depression, It is undescribable unless one has suffered from it to any degree.
Sometimes the reason people don't recognise and get treated for depression is because all they are scared of showing weakness. They have all the feelings of being inadequate and unworthy so admitting you have a problem just compounds the depression.
It needs to be more out in the open.
I burst into sobs when I saw this. And I'm not a cryer. I don't have depression now with PD but did have, and my children (grown in their 40-50's) are in treatment for it. And I know one thing on top of another (open heart surgery, etc. in his case can add up . A permanent solution to a temporary problem, still, my heart goes out to him and his family. I chant and pray for them and us.
Hi Ron. I don't want to place the blame on anybody for Robin's terrible decision, as nobody is to blame for what he felt he had to do.
However! If doctors were to tell their patients that "It is not the end of the world!" then none of us would have gone through what we have. My neurologist said, "I had an incurable degenerative neurological disease that would gradually make me totally immobile. There was nothing I could do about it, so I must get on with my life!"
He might have been right, but he wasn't. I did get better, a lot better, but I did not know that.
We must never give in! We must never think that our lives are over!
For every newly diagnosed Pd patient I say, "There is HOPE!" I now live a normal life, medication-free for the past twelve years. I know this can happen, because it happened to me! It might not happen to everybody but it can happen to some.
Hang-in there.
John
life changes with a PD diagnosis and it hits people hard. It took two years for my husband to accept and adjust. After working with people with depression myself (I'm a caregiver for my husband who has PD), I know that it's hard to shake that feeling that life will only get worse. Also if you have had multiple episodes of clinical depression, it becomes harder and takes longer to claw your way out of a major depression.
But you are right. This is a Teachable Moment. The public has an opportunity to learn more about clinical depression/major depression as well as PD. The fear in the culture is intense and so is the stigma of depression or any mental illness. 50% of us get depression during the course of PD in a lifetime. I'm sure it's higher. Face it in yourself and talk about it openly. It's a neurological issue, too.
Please no disrespect intended...are you sure you have a PD DX? Twelve years no meds? I would be six feet under w/o my sinemet, xanax, gabapentin, and MMJ cannabis (legal in Colorado).
You are truely amazing and an inspiration to me. My twelve years of PD don't paint the same picture as yours.
Hi MGirardi. We are all different. We all have different symptoms and react differently to medication. First of all, I am quite sure I have Pd. Hopefully, for the sake of all other Pd patients, I will soon have scientific proof of the fact that I do have Pd. When it comes it will put this question to bed, once and for all. I have to work very hard at keeping my Pd symptoms at bay. When I am unable to walk, due to other medical or injury problems, my symptoms get worse. I have to work extra hard to get them back in line again.
One thing is certain. We all have different pain tolerance levels. We all have different fitness levels and we all have different levels of determination. I am a very determined person. I gave up smoking in 1961, cold turkey! I battled like everybody else to resist the temptation to smoke again, but I was determined not to do so. I will not give in to something, if I have made up my mind to do whatever it is. Perhaps that is the only difference between success and failure sometimes!
John
I was aggravated when my local news reported that Robin had both depression and parkinson's but that the depression was not related to the parkinson's. From what I have read, it most certainly is a common component of Parkinson's.
Hi Marion & Quirkyme. It also took me two years before I woke up to the fact that if I did nothing about my Pd, other than taking medication, I was going to continue to go downhill very quickly. Not knowing what to do about it, I assumed that Pd, being a movement disorder, I should do as much exercise as possible so that my muscles and joints were kept moving as much as possible. I found that working hard in the gym every day for 90 minutes was not doing me any good. Out of sheer frustration, I stopped going to the gym. My wife was horrified with me for stopping. She had joined a walking program, three years prior, and she had lost 31 pounds, had stopped needing to take blood-pressure pills and was feeling better than she had ever felt. She managed to persuade me to join her in this program. Only four months later, I had already noticed an improvement in my fitness levels. THAT CHANGED MY WHOLE LIFE. I put everything I had into the walking and within 18 months I had improved my times from over 17 minutes per mile, down to under 11 minutes per mile. I have not stopped since then. I am now 79 years old and still walk for 1 hour, three times a week, but I walk a bit slower now. I stopped taking any Pd meds 12 years ago and have not looked back since then.
Good luck!
John
I no longer think of PD as just a movement disorder John, i think of it as a multi systems disabiliity. It is the non motor symptoms that are more of a problem for PwP as time goes on. Mood problems, depression, anxiety and apathy are certainly very common. I agree Marion, depression is often part of PD. How sad when news reports make such misleading statements.
But you do face it alone. And no one can really help. That's how i feel anyway!
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managing days with poor sleep.
B1 and madopar experience
When did you tell your adult children?
