Parkinson’s

[falconbrother]

For 30+ years the Camino called. Last May through July I walked the Frances from SJPSP -Santiago. Arguably the best experience of my life next to marrying my wife. Today I got the news that I have Parkinson’s disease. I now know how I will most probably die.

Please be kind to one another. Allow people to be where they are. If Perigrinos can’t be decent with one another then humanity truly is lost.

I will fight with everything I have to keep going for as long as I can. I’m so glad that I got to walk the Camino before this diagnosis.

 

[OTH86]

Courage, @falconbrother ! I was recently diagnosed with a similar "affliction" and will be on my next camino later this Fall. Prayers for you and your family.

 

[woody66]

I will fight with everything I have to keep going for as long as I can. I’m so glad that I got to walk the Camino before this diagnosis.

With that attitude; you will do more than you can imagine!
You will find a way to fulfill your dreams tell yourself you can do ; and you will walk another Camino!
Buen Camino
Woody

 

[Virginiawalker]

For 30+ years the Camino called. Last May through July I walked the Frances from SJPSP -Santiago. Arguably the best experience of my life next to marrying my wife. Today I got the news that I have Parkinson’s disease. I now know how I will most probably die.

Please be kind to one another. Allow people to be where they are. If Perigrinos can’t be decent with one another then humanity truly is lost.

I will fight with everything I have to keep going for as long as I can. I’m so glad that I got to walk the Camino before this diagnosis.

I have had a Parkinson’s diagnosis for about 3 years and am leaving in 10 days to walk Sarria to Santiago. The best thing we can do to slow down the onset of symptoms is to exercise, and walking is a great way to get it. I have been training since January to do this 117 km and know that even with that training I will face daily fatigue. I hope I can make it, but will accept what ever turns out to be my Camino. Parkinson’s is not a death sentence, it is a series of challenges that you can face to push back the timeline of symptoms. I rock climb with a Parkinson’s group twice a week and also attend Dance for PD twice a week. My advice to you, as a recently diagnosed patient is to double down on your exercise to fight back against the disease. I don’t know what will happen on my Camino but I think getting out there and trying my best is my way of saying “take that Parkinson’s”. God bless you and keep moving!

 

[Dave2525]

My mom has Parkinson's and she turned 92 this year so it is definitely not a death sentence. As mentioned, there will be many new challenges in the years ahead which you and your family can hopefully deal with.

 

[GaTeach]

I'm so glad to have met you on the saunter over the Pyrenees. The laughter and fun we had sliding through the mud will always be a fond memory of my Camino. I hope to see y'all out there again. You both bring so much light to the world. Truly the kind of pilgrims everyone wants to meet. Prayers and love.

 

[Ivan_Prada]

Hello @falconbrother:
I’m also a Parkinson patient diagnosed in 2014; and did Camino in 2018. So, Parkinson’s was my traveling buddy.

Having this ailment does not mean that is the end of everything, on the contrary take as challenge. I felt bad (depressed) when first diagnosed, but promptly realized that by keeping such attitude I was letting the ailment to control me; which I refused. In every visit to the Doctor, I’m being asked if I’m depressed and offered to take anti-depressants, which I refuse.

Many advices have said on this tread (and in other treads here on this forum). My advice is train harder than ever, keep moving, believe in yourself; there will be frustrating moment but that is when you relax and meditate.

In your preparation for your Camino, listen to your body, take breaks when you need it, take your medications at usual times; relax and enjoy what is around you.

Keep on moving is my is my “cry of encouragement “, don’t give up that’s what the ailment wants, you keep fighting.

Buen Camino,

Iván

 

[msconduct10]

I’m so sorry for your distressing dx, but others are correct here. Science has come a long way with Parkinson’s. Find a great doctor, do what they tell you to, and stay active. My mom had Parkinson’s for 25 years and ultimately died of breast cancer. She would have been around a lot longer if not for going through the cancer. I also highly recommend talking to a therapist to help process your very understandable grief and fear. Having gone through a serious illness myself, I found it so helpful! Sending you love and peace and fortitude!

 

[Rwish]

For 30+ years the Camino called. Last May through July I walked the Frances from SJPSP -Santiago. Arguably the best experience of my life next to marrying my wife. Today I got the news that I have Parkinson’s disease. I now know how I will most probably die.

Please be kind to one another. Allow people to be where they are. If Perigrinos can’t be decent with one another then humanity truly is lost.

I will fight with everything I have to keep going for as long as I can. I’m so glad that I got to walk the Camino before this diagnosis.

An active friend of mine also came down with Parkinson’s. As his walking abilities declined he took up cycling using a 3 wheel recumbent peddle bike. He biked daily and went on lengthy cross country trips. He needed his wife to accompany him for support and at times when she could not go he was able to recruit volunteer assistants to ride with him. He had amazing resolve and was able to extend his active lifestyle for many years.

Best of luck in your journey and new life of adventure ahead!

 

[JerryStroebele]

My mother, my wife's mother, now my life long friend all had or have Parkinsons. I am sorry for your diagnosis. I encourage you to plan and train for another Camino. When there, walk short stages, call a taxi if they are not short enough, book private rooms in albergues if you feel the need. But please come join again with your pilgrim friends. Buen Camino

 

[t2andreo]

Time is your biggest ally. There are several, recent medical treatments being tested.

In particular, one in the UK has produced dramatic results in only a few days. For example, have a look at this article from today's New York Post:

Remarkable video shows UK dad with Parkinson’s Damien Gath before and after taking breakthrough drug: ‘Life-changing’

Days later, Gath, was walking around the kitchen with ease.

nypost.com

NEVER give up. ALWAYS keep fighting. The Camino will be there when you are ready to return.

Attitude is a large part of how this disease will progress, if it does, how it might be treated, and how that will affect your life.

Your diagnosis is like a gut-punch. But, it is not the absolute, unavoidable, death sentence it once was. Diseases that once meant you had no time left, now mean that you have to deal with some 'speed bumps" on the journey of life.

When you have a down day, or days, pick yourself up, dust yourself off and keep moving forward. FIGHT this thing. You can do it!

Ultreia!

 

[bullingtonce]

For 30+ years the Camino called. Last May through July I walked the Frances from SJPSP -Santiago. Arguably the best experience of my life next to marrying my wife. Today I got the news that I have Parkinson’s disease. I now know how I will most probably die.

Please be kind to one another. Allow people to be where they are. If Perigrinos can’t be decent with one another then humanity truly is lost.

I will fight with everything I have to keep going for as long as I can. I’m so glad that I got to walk the Camino before this diagnosis.

You are moving forward with the right and healthy perspective. God has blessed you indeed. Chuck

 

[vwzoo]

For 30+ years the Camino called. Last May through July I walked the Frances from SJPSP -Santiago. Arguably the best experience of my life next to marrying my wife. Today I got the news that I have Parkinson’s disease. I now know how I will most probably die.

Please be kind to one another. Allow people to be where they are. If Perigrinos can’t be decent with one another then humanity truly is lost.

I will fight with everything I have to keep going for as long as I can. I’m so glad that I got to walk the Camino before this diagnosis.

You can do it. It too called me and it changed my life. It was a wonderful experience that is just too hard to explain to people. One step at a time it can be done.
I was diagnosed with Parkinson's plus or Atypical Parkinson's with multi system atrophy this year. I walked Camino Frances in Sept 2018 when I was 56 and hoped to do it again as my retirement gift to myself next year.i have been an avid walker for several years getting ready to walk it in 2018. I can't seem to find anyone that matches up with my symptoms the most troubling one if I walk until I am exhausted I have literally passed out and pay for it post walk into the next day feeling confused, altered. My neurologist has told me that's typical with my diagnosis and I have to find a sweet spot but can't walk until exhausted. I walk with a limp unless I use walking poles and I am experimenting with distances and breaks to see if I can find this sweet spot. I was wondering if anyone else has had this situation or may know someone who has worked through this.

 

[Dinnie]

An active friend of mine also came down with Parkinson’s. As his walking abilities declined he took up cycling using a 3 wheel recumbent peddle bike. He biked daily and went on lengthy cross country trips. He needed his wife to accompany him for support and at times when she could not go he was able to recruit volunteer assistants to ride with him. He had amazing resolve and was able to extend his active lifestyle for many years.

Best of luck in your journey and new life of adventure ahead!

FYI: NBC New-April 2017-How Patients Are Using Cycling to Slow Down Parkinson’s.

How Patients Are Using Cycling to Slow Down Parkinson’s

Researchers at the Cleveland Clinic are finding that cycling is helping patients stop the symptoms of Parkinson’s, and can even do something that medicine can’t do.

www.nbcnews.com

Take care and all the best to you @falconbrother.

 

[demetia]

For 30+ years the Camino called. Last May through July I walked the Frances from SJPSP -Santiago. Arguably the best experience of my life next to marrying my wife. Today I got the news that I have Parkinson’s disease. I now know how I will most probably die.

Please be kind to one another. Allow people to be where they are. If Perigrinos can’t be decent with one another then humanity truly is lost.

I will fight with everything I have to keep going for as long as I can. I’m so glad that I got to walk the Camino before this diagnosis.

Do not despair brother. You will be amazed what you candour, rather than what you can't. My friend has a similar diagnosis and for this reason I am dedicating this Camino Portuguese from Lisbon to raise funds for Parkinsons UK. I think this is the spirit of the Camino - to be able to help others while testing yourself. Link is https://www.justgiving.com/page/gar...3ufxxqpnjggaemltbe_aem_c_teljrpojg9_xtdo9oazq
If anyone would like to learn more.
Good luck Brother. There is a whole community rooting for you