Am I the only one?...
There are times when I just cannot get enough information, I want to know all that's out there about every single infuriating, painful, depressing, anxiety making, frustrating, falling down, tremoring thing that can b "P"...and how to fix each
Then...
Other times...
I want to be in a space where it doesn't even exist...
Love and light alll
no, you are not the only one. I feel the same way, though not about myself but about my son's early diagnosis with PD.
Thank you for your reply PNIAuthor60.
I realise that regardless of the struggle, there is always a bigger struggle elsewhere.
The practices of radical acceptance and mindfullness can help
Love and light to you, your son and all
You are very kind, thank you.
Can you tell me about your son PNIAuthor60..
Maybe you would prefer not to. I understand.
I would be happy to talk with him any time
Kind regards
I will see him tomorrow morning and mention your kindness.
He was 37 when diagnosed, but in 8 mos deteriorated so much that we had to get a variety of aids to help him at home.
He's had genetic testing and before we could celebrate that he didn't have genetic markers for PD, we were told " but it doesn't mean that he doen't have Parkinson's."
We've waited a year for him to be seen by a team of specialist - our appointment is coming up on April 18.
He has a tremor on his right side, difficulty walking some days, drags his right leg, struggles with dressing.
It is hard to see and harder to understand as no one edcates us or tells us anything.
i am looking forward to joining a local support group this month
I can feel your anxiety and your pain for your son.
What I can tell you from my experience, is that at times of stress or even when on an essential anti biotic, symptoms can be much more severe. Before my actual diagnosis (and getting correct meds), my symptoms were so bad, you would have thought that Id had a stroke.
The 18 April can't come fast enough for your son and your family. Its a life changing episode, no doubt about that. There is help there for your son, for you and yours. Please read up on radical acceptance....what ever is diagnosed...that will be a great and useful tool for all of you.
Sometimes, things can get worse before they get better
Take care. Stay strong.
Love and light to you and yours
Try this link: parkinson.org/Living-with-P...
Thank you so much, I appreciate the link and look forward to sharing it with my son
PNIAuthor60...
you, your son and family have been on my mind. I hope your appointments yesterday helped to reveal the missing information that you all need, so that you can all finally know what you are dealing with, and get on with your new reality.
All the very best to you and yours as you start a new journey.
Thank you for thinking of us, there are multiple issues being investigated and we have been asked to come back in a week - we also learned that my son had an issue since birth but as his parent I was never advised of this and he has missed out on multiple levels of integrated medical support.
We are numb with anger about being kept in the dark.
Your comments dispelled the darkness for a few moments - God bless you!
You are not on the journey alone.All Pwp walk with you.Hope they say is on the horizon.
GBAMIGOD
Hope...
Hopefully Our Parkinsons Evaporates
Love this! Brought a smile!
I feel like this, too. When I’m feeling good, I’m not interested in reading about it or thinking about it. Last week or so, I noticed a new symptom (tremor in my chin), so it’s heightened my sensitivity, as a whole. Now I’m reading and making changes again.
I wish I could be more consistent in taking care of my diet and exercise. Thankfully, spring is here
Hi Maxjc. Don't despair! If you look at my website - reverseparkinsons.net you can get all the information you need to also get better, as I have. If it doesn't work for you it will not have cost you a CENT! You will at least be a lot fitter than you were when you started.
I was diagnosed with Pd in 1992 and in 2002 I managed to stop taking my Pd medication and have lived a normal life since then. am now 84 and am still able to walk seven kilometres in an hour. What are you waiting for?
John Pepper...you are awesome. Thank you
Thank you Maxjc for your kind words.
I have often felt that way, too! I believe that you are far from being the only one, Maxjc. Parkinson's began robbing me of multiple, primarily, motor symptom's, abilities, starting about 12 years ago, little by little; however, I was only diagnosed about 3 years ago. I had been diagnosed with Ataxia, before PD. when first diagnosed with PD, I wanted information, but could only read up to stage 3 information. I didn't want to think about anything after that. Because it's changed my life so adversely, looking back on how the symptom's started, and progressed, I, also, want to be in a space where it doesn't exist, for me. That's not reality, though. So, as the saying goes, dream on! For those, fortunate enough to have mild PD, and where there is slow advancement, I am happy for them, and hope they don't ever have to deal with advanced PD. Tremors and falls get old after awhile, and it's good that there is medicine that can help alleviate symptom's of PD, which makes all the difference, in being able to cope day to day, unlike some other neuro-degenerative diseases, that medicine is not very effective in treating. So, with me, I find that exercise, eating a balanced, Mediterranean diet, and focusing on what I'm able to do, rather than what I have lost, or am losing, is the best way to manage my advancing Parkinson's symptom's. It's not easy, some days, but we must remain hopeful!
ddmagee, I thank you for that. You are so right.
We've got to
Accentuate the positive
Eliminate the negative
Latch on to the affirmative
And get the smile back...even if only on the inside
Love and light to you
Hi ddmagee. I don't want to interfere in what you believe but may I ask you if you have actually tried to do the fast walking?
Yes, I have tried the fast walking, but am unable to go as fast as I'd like. In fact, I walk at a moderate pace now, whereas there was a time that I could hardly walk. So, when I go out for my daily walks, I do challenge myself to go faster, and, I really believe that has helped me a lot, in terms of exercise, to remain more flexible with having PD. Interesting that you bring this up. I live in a retired housing area. One of my friends, that I go walking dogs with, is a bona fide die hard fast walker. He gets me going, and is an inspiration. He does not have PD. He is an outstanding motivator, though, being a former CEO of a company. Being retired has not stopped him from keeping active. Because of my Cerebellar Ataxia, in addition to PD, I am uncoordinated, and have always had balance problems. I have never been able to run, or to ride a bike. I tried, but didn't last long. So, yes, there are many benefits to walking fast, I realize. Getting the heart rate up, is important. I am pleased that I have come from having to use a cane a lot, and only being able to walk short distances, slowly, to, now, being able to walk long walks. Of course, it doesn't help that I have bone on bone arthritis, in both knees, as confirmed by x-rays. My orthopedist Dr. Injects me with syne-nuclein joint fluid, and that helps a lot, in addition to supplements. I prefer not to get knee replacements, at my age. Thanks for your question. I believe that if I do my best to remain as active as possible, it will be of benefit to my health, in more ways than one. My Dr's agree with that, too! By the way, my Son-in-Law, is a Doctor, and runs marathons, and my Daughter is a medical professional as well. They all are trying to keep me as active as possible, and keeping PD and Ataxia symptoms manageable is a team effort!
Hi ddmagee. I would love to be able to help you and listening to your story it is clear that the exercise you are already doing is helping you to get fitter. I don't know your age or where you live but would love to encourage you to have those knees fixed and start to live again. I am 84 and have had lots of other health problems, but I consider myself to be very healthy.
Very good! I am 72, and live in Michigan, USA!
Hi ddmagee. As you said, you can't do the fast walking with bad knees. Is that financially a problem or do you think you are too old?
Neither! I know too many people with knee replacements who have had bad outcomes. The Cerebellum Ataxia, along with the childhood effects, of when I had a mild form of polio, and had to wear braces, on my legs, at times, prevents me from being able to run, and walk really fast! It's a matter of numbness and partial paralysis. I, also, had a back compression fracture at L-3, that is painful, and gives me trouble at times. All this, contributes to my inability to do fast walking. It really has very little to do with Parkinson's, if anything.
Hi ddmagee. I am fresh out of ideas and have to bale out. Sorry!
That's ok!
I do fast enough walking to get my heart rate up, and long enough, to benefit my exercise protocol, so it's all good, Mr. Pepper!
I feel like i am spinning my wheels when it comes to information. Sorry
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