Neuros rarely talk about mindset or the mental side of PD apart from being positive. It is difficult to adopt a stance when you don't know what you have or its impact. How do you react to PD?
1) See it as a fight/battle?
2) Accept it but play it down as a minor inconvenience.
3) Think it is a big deal but it could be worse.
4) Other?
Deppression is a big problem for my husband. With that everything is worse. He to has lost appetite and lost 20 lbs. nothing tastes or sounds good.
Yes, depression is a tough one and is complex to work through. Having some depression myself I can understand where he is coming from. I found Ajahm Brahm's talks helpful, he is a buddhist monk and has many talks on youtube.
Do you have a Movement Disorder Specialist or a general Neurologist? My husband's needs were better met when we switched to the MDS. He was more in tune with the non-motor symptoms of PD and my husband did much better after starting Zoloft for his depression. PD is a progressive disease. New treatments are in the works so we must have hope and be as positive as possible. Each day can be different and learning to pace oneself, get adequate rest, eat nutritious foods and exercise is key.
Upon his PD diagnosis my husband and I went through stages of depression and grief while we got used to the idea and reassessed our future. We are both normally quite positive people, but learning what to expect from PD and a year of struggling to get his meds working threw us into a dark place for a couple of years.
Since then, we've decided not to just accept all the dire predictions about PD we read online (which are often so negative they only add to the depression - not at all helpful). I believe the power of the mind can make a huge difference to how things turn out. We no longer accept that PD cannot be cured and that there is nothing we can do except what the PD specialist instructs. For us a cure is just around the corner and there are things we can do to improve our situation in the meantime.
We've kept charts to try to figure out which foods and stresses interfere with his PD medication so we can prevent many 'off' periods now. We have also actively searched for natural treatments and we've experimented with a few, finding Mucuna to be the most beneficial. Humour gives us a big lift and we have lots of in jokes about his PD wobbles. We talk freely about the ups and downs of PD to anyone who wants to know. Telling all to our families has demystified PD for them and helps them understand exactly what's happening to him when he switches from 'on' to 'off' and back again. In addition we make sure he gets plenty of helpful exercise, as well as a healthy diet and lots of pure water, sunshine and fresh air.
All of these things have helped us both mentally and him physically, so we feel empowered and happier knowing that what we are doing makes a difference. PD has made us both stronger, has brought us closer to each other and to the rest of our family.
Everyone has their own troubles they struggle with and they can always see someone who looks to be worse off than themselves. It is always uplifting to focus on what we are grateful for in our lives. Try to find that positive place in your life to make the best of what you have been given.
That is excellent. Thanks for explaining in detail. I agree, a lot online is very negative and it is best to manage it yourself if you can.
Michael J Fox is a big inspiration for us, especially considering how long he has been living with PD. Have you ever seen the video of him ice skating?
oprah.com/health/michael-j-...
Yes, he is a great mover on ice.
I was Dx'ed in 2003, 49 years old, at first I accepted it thought it was no big deal . In 2005 I had bilateral DBS it was very successful. I retired in 2007. 11 years later I am taking Stalevo 150 8 AM, 50 mg levodopa 10 AM, 125 stalevo 11 AM, 2 PM, 5 PM, 8 PM, 200 mg time released levodopa 11 PM. having a problem with dyskinesia in my right foot. amantadine seems to help with this. My speech is not good and I Sometimes stutter due to the DBS. I am starting to feel a little inconvenience, and for the first time am beginning to be concerned about the future. My advice to anyone faced with Parkinson's is to do the things you want to do while you still can, and still can enjoy them. Try to live in the moment.
hi midnight, you went from dx to DBS in 2 years? Had you the symptoms long before 2003?
Concern for the future is something we all have from time to time, hope the meds help you. Wise advice about living in the moment.
Hi Ozie, Looking back I can see symptoms that appeared long before 2003, but the reason I jumped on DBS so Quickly was in the hopes that I could keep working, also my brother is a physician and he talked to Neurologist friend about me & DBS and recommended that I have it done.
Very interesting question
1/ In that exercise , very strenuous, over the top, force yourself to keep going exercise will result in a reduction of PD symptoms. It is a constant battle every single day.
3/ It takes over your life and changes everything and you feel sorry for yourself but then one day you see someone with one of the other diseases and you say there but for the grace of God go I and you feel so bad for them, but there is little you can do to help them.
Be Happy
I try to do everything I can with my friends and family. I think it is of paramount importance to maintain a positive attitude.
This is something I wrote a while ago that died a quick death on some obscure website. Take it for what it's worth.
"'Mything' the Point: Some Thoughts on "Living Well" with Parkinson's Disease"
Any survey of publications, conference and discussion topics related to Parkinson’s disease is sure to include numerous references to the importance of maintaining a positive attitude in the struggle to coexist with this condition. The case for optimism often comes under the rubric of “Living Well with Parkinson’s.”
The LWWP claque will tell you about the importance of assembling a comprehensive disease management team of health professionals to deal with your condition. It won’t tell you about folks who have gone 20 plus years without insurance and could never dream of paying the costs of a medical entourage.
The LWWP crowd will tell you about retirement and enjoying the wonders of nature, as for example, in a recent WWW posting i read, gushing about the beauty of sunsets in the Bahamas. It won’t tell you about someone with PD, forced to continue working somewhere in the Rust Belt, with the sky ‘looking as if it had been rubbed with a soiled eraser.”
The LWWP believers will enthuse about an athlete with PD who is planning to run 20 marathons in 20 different countries. They won’t tell you about some guy with gait and balance issues, who, on a good day, is barely able to drive himself to a PD exercise class.
The LWWP adherents will tell you about the need to communicate with family and friends in order not to become socially isolated. They won’t tell you about the caregivers, husbands, wives, relatives and friends whose reserves of patience, tolerance and love are laid to waste by the challenges of living with PD.
The LWWP faction will tout the wonders of cutting edge pharmacology and invasive procedures such as DBS. They won’t tell you about the risk of long term cognitive deterioration or the chance that your ability to speak or clearly articulate will go to hell in a hand basket.
The LWWP proponents will tell you a PD diagnosis is not a death sentence. What they won’t tell you is that it is a life sentence.
Assuming there are a few of you still with me, I acknowledge that the fare offered to this point is not to all tastes. There are those whose response will be along the lines of “I don’t think this helps,” “There are always going to be people who want to draw attention to themselves,” or “If you are determined to be miserable, then you can certainly expect to have to live a miserable existence.”
These kinds of reactions miss the point by a wide margin. To my mind this whole promotion of the idea “Living Well with Parkinson’s” is arrogant and condescending in the sense that if you are not “on board,” your attitude is automatically assumed to be negative, counterproductive and not worthy of inclusion within the parameters of arbitrarily established standards of how to think about Parkinson related issues.
My personal take on having PD is that getting it is a kind of cosmic joke and one way to
deal with it is through the prism of a kind of lethargic, ironic humor. This attitude may not put me in the mainstream, but it strikes me as a completely legitimate philosophical framework from which to approach many of the challenges related to living with PD.
Furthermore, my stance has not prevented me from consistently volunteering for Parkinson’s research projects, maintaining a vigorous exercise regimen, serving on several advisory boards, and writing articles and giving presentations for purposes of Parkinson’s advocacy. It’s quite possible to pursue these ends without buying into the concept of “living well” with Parkinson’s; I do these things because that’s what there is to do, not out of any overarching sense that these activities contribute to a better quality of life.
“Living Well Well with Parkinson’s?” Get outta town!! In the interests of “keeping things real,” one might be better served by the notions of “getting by” or even “muddling through” in connection to this weasel-like condition.
Just love the commentary. Mind you I am just a care giver, but I do appreciate you point of view and your cogent delivery.
I think you are living well with Parkinson’s 🌺😊🌺
Believe me, you are a lot more than "just" a care giver. Half the people here including me, would likely be dead if it weren't for people like you.
Thanks for your kind words and thoughts, but I think my mindset keeps me in the "muddling through" camp -- it's too late to turn back now.
Yes: "Living Well with Parkinson’s” is arrogant and condescending".
Thanks so much for your insightful reply. Sometimes I joke that I have Acute Stiffness Syndrome or ASS for short, and in an enjoyable way it lifts a load off me. The trouble with a medical diagnosis is that you can feel pressured to conform to the symptoms and see yourself as the PD person. Even the trip to see the neurologist, however well meaning he/she is, can be a dehumanising experience as you feel perceived not as a person but a bundle of PD symptoms. I saw a Youtube video that I can't find now where a young woman was explaining that even though she had a terminal condition she could still enjoy hers days, or parts of her days, or even just moments. The point being she was saying dying is seen as a morbid topic with no value to living but she didn't want to buy into that.
levels of PD
Why consider Ambroxol for PD?
Finding Joy in the Midst of PD
Still not convinced it’s PD
