When you hit an iceberg...

[faridaro]

Seeing people's posts about being devastated at their PD diagnosis, made me to reflect on my own journey. I was diagnosed this March, just 3 weeks after my dearest friend passed away from cancer. Seeing her turning from a strong, vibrant, funny, playful woman into someone looking like being released from a concentration camp (just in 4 months) was absolutely heartbreaking. However, she faced her illness with such faith and emotional strength, completely trusting God with her life, setting example for everyone who was fortunate to know her, that this terribly painful experience helped me to accept my diagnosis with peace.

There is a quote written by someone which keeps on coming into my mind in times of trials:

"How do you build a life so that when you hit an iceberg you don't collapse like the Titanic? How do you do that?"

And the truth is that sooner or later every human being will have to face "an iceberg" in their lives, it's only a matter of time. So it's good to be prepared by learning from other people's experiences, building up yourself spiritually (this helps me immensely) and meanwhile be thankful for every moment we are allotted to live in this world which is temporary. Just being aware that we are temporary beings clinging to this temporary world helps me see (in moments of weakness) how futile is to be upset about my diagnosis.

[Enidah]

Two years before my diagnosis I watched a good friend turn from a healthy robust 50 year old into skin and bones within a few months from pancreatic cancer. It does indeed put it all in perspective. It doesn't mean there aren't bad days and I don't get incredibly frustrated but that is always in the back of my mind, that unique perspective on what happens to us. I have now had 16 years longer than she had in this world.

[Enidah]

6 years, not 16.

[parkie13]

I never thought why me. I always thought why not me. I was relieved when I got the Parkinson's diagnosis, for a while I thought I had Lou Gehrig's disease. So that was a relief in a way. Where I worked there was a lady that was diagnosed with Lou Gehrig's and our symptoms overlapped. However as the time went on and I did not become catastrophically worse I decided I did not have it. The lady died within a year and a half. I feel I'm going to deal with it when it comes. So far I am accepting of it. It is what it is so I cannot do anything about it sorry about the platitudes. There's times when I get very angry and I just slam things, most of the time it's cabinets and drawers and doors. Every single day I struggle with my symptoms. Mary

[ddmagee1 in reply to parkie13]

Parkie13, Yes, I thought I might have ALS, rather than PD, so I went through emotions similar to yours, Rather than being down on oneself, I always say that there are many others that have it much worse than I do, and I am thankful for each day!

[ddmagee1]

Excellent post, Faridaro! Most uplifting and encouraging. Having faith and mental toughness to remain positive, in the face of adversity, and having an incurable, debilitating condition is not the easiest thing to handle! I admire anybody that has that fortitude and courage to help them get through every day and make the most of the days they have left on this earth.

[NRyan]

Thank you for your inspiring post and replies!

I knew I was becoming sick the last 5 years (due to extremely high, constant stress levels)....but I didn't know exactly what was coming my way. Last November 2016 the tremor started. I rationalized it for 5 months....pinched nerve, etc. In March, it moved to my mouth as well. Then very painful multi-focal dystonia started. I realized I had PD (my dad had it) and I spent a week crying and saying why me? At 51 with a 12 year old son, I was not ready for yet another (long and permanent) bump in the road. Then I remembered that my dad had PD for 23 years. He had a wonderful life, even with PD. I spoke at his funeral and told all the mourners how in the 23 years that my dad had PD, I NEVER once heard him complain or feel sorry for himself....ever. As an occupational therapist and caring daughter, I spent a lot of time with my dad in those 23 years....never once did I hear him begrudge his fate. He also did NOTHING, other than medication, to help himself (very stubborn man).

Before my dad's diagnosis. he was a physician and quite a narcissist. We never really got along my entire life, although I had a love for him (I have no idea why! lol). After my dad developed PD, our relationship changed to one of love and closeness. In narcissist style, my dad attributed the change in our relationship to me becoming a different person. lol! I guess I was now lovable. Anyway, I kindly corrected him and focused on the fact that I was now given a parent who was kind, caring and loved spending time with me. For 23 years, I was so grateful my dad had PD. That was the catalyst for change into a wonderful dad, the dad I always wished for. My heart sang. The closeness that grew between us was there until the very end. He mouthed "I love you" to me right before he died. I miss him every day.

I used my dad's example of how he dealt with his diagnosis to guide me quickly past my mourning and self-pity (my son was watching how I handled my diagnosis) and into research to help myself. I changed my diet and exercise routine and all symptoms have disappeared for now. I only think about today and try and live in gratitude and mindfulness (nutrition, exercise, stress level, etc) to guide me. I know everything will be ok as long as I do that. As a health practitioner, I too, know how lucky my first 51 years have been (my maid of honor died last year at age 50 from a heart attack) and how much worse my fate could be. I am grateful to have PD as it has changed the way I look at every aspect of my life. I look at it as the gift my dad gave me. I will also be grateful when I move past PD, thanks to my own efforts. The Buddhists believe we chose illness (unconsciously, of course), and that we can also choose to move beyond it once we learn the lesson the illness brings to us. I don't know if this is true, but I have decided to try and find out for myself. Stay strong and surround yourself with light and inspiration!

[Skydome in reply to NRyan]

Thank you for your beautiful post. As a health practitioner, could you elaborate a little on your exercise and lifestyle changes that have made your symptoms disappear? It would be very valuable guidance for me who also have just started on her own pd journey.

[lhart6387 in reply to Skydome]

I would like to know also, I'm always looking for new ways to ease symptoms. Thank you for your post.

[NRyan]

Nutrition, nutrition, nutrition for me. I no longer eat any grains, red meat, eggs, night shades or legumes. No sugar (other than local honey) or any dairy from a cow. There is a lot left! lol! I eat healthy and have lost weight. I feel great. I do take L-Tyrosine, lithium orotate (5 mg), Astaxanthin, Ubiquinol and CDP Choline every morning (I have noticed I am a much nicer person to my family when I take these). I take lots of Omega 3 (Nordic Naturals), Vit D 3, Vit K several times a day. I take GABA, Ashwagandha root and Neuro-Mag (mag theronate) every night. There are others but those are the ones I take religiously. I also eat a whole avocado every day, and only use ghee, avocado oil and coconut oil to cook with. I use olive oil for salad dressings and to drizzle over food only. NO fried foods ever. I eat raw, fermented foods every day (Kimchee, sauerkraut, etc). I eat two scoops of Goat Whey Protein (for amino acids) every day. I eat lots of root veggies. Lots of fluids. I avoid food in cans and choose glass if possible. Minimal prepared foods. I do avoid spinach as the iron is high...PwP have high iron in the brain. I do nordic walking (following John Pepper's instructions on conscious movement and heart rate) several times a week. I do know it all is working as in the past six months, even when I didn't have any symptoms, if I became upset....my body would start to tremble. I got into an argument yesterday with my partner ( I usually try desperately to avoid becoming upset) and I noticed that I was not trembling anymore, even though I could wring his neck. lol! I was so happy to find that my body was calm. It was worth the argument. It has encouraged me to continue on this challenging but doable road. I have a friend eating in a similar way for her neuro health.....it helps to have someone to text for encouragement! Lots of people are eating this way now, which helps me to stay on track (I do cheat once in a while, usually when out with others as I am not telling most people I have PD, I want to look like I am eating somewhat normally to avoid suspicion). Research....there is a lot of info to guide you and then go for it!

[faridaro in reply to NRyan]

Thank you so much for sharing your protocol with us - so glad it's working for you!

[Skydome in reply to NRyan]

Thank you so much for sharing. The supplements that you take every evening, do they help with sleep? I do have difficulty falling asleep.

I, too, follow John Pepper's Fast Walking method, though I am slowed down by some rigidity in my right leg. Still, it is an exercise I enjoy doing and I can track my progress with satisfaction.

Please keep sharing your ongoing experience and new discoveries. Thank you so much!

[NRyan in reply to Skydome]

Yes, they help with sleep and are wonderful for your brain.