Mental fitness

[Golferstill]

So here we are, we won’t die from Parkinson’s, we’ll just die with it? The fight with Parky continues, the meds aren’t working as well, sleeping all night is a joke, attitude and mood is starting to change, I need a change. Anyone doing anything to enhance quality of life and mental fitness while continuing the journey?

[beehive23]

Recognize that PD is a terminal illness and start palliative care. My dr on podcast with some music you can pass up. Dr Kluger heads up a new Pd/Neuro wing in New York. youtube.com/watch?v=7PfIz6S...(Not working as expected?)

[jeeves19 in reply to beehive23]

Most uplifting. Merry Christmas 🎅🏻

[ddmagee1 in reply to jeeves19]

Hi Adam! Wishing you and your family, a happy holiday season! Going forward it is best to look at the brighter side of life, as we continue this journey! We need to remain emotionally strong, in our determination, to not let PD ruin our everyday living experiences! This takes a great deal of patience, and fortitude! With the Pandemic continuing, and much negativity in the world today, staying positive is a challenge, but we must not give up, and let PD take over our lives! Take care! Doug

[gginto in reply to beehive23]

I guess there are optimists and pessimists in this world..lol

[beehive23 in reply to gginto]

palliative care opens up whole new medications and approaches not offered in an non palliative setting and increases Dr. support. not optimism or pessimism...its realism. until the USA acknowledges the terminal illness there will not be government influx of money to research. after 20 yrs my pessimism is born of 41% lung capacity due to rigidity in chest wall muscles and diaprahgms along with dystonic storms etc etc. cheers.

[Astra7 in reply to beehive23]

That’s the worst advice I’ve ever heard!You can do so much for PD for so long. Palliative care is the end game.

A guy at work started having balance problems, and 3 months later after numerous tests, massive weight loss, confusion and memory loss he has been given 3 months to live. He’d give anything for a diagnosis of PD.

[beehive23 in reply to Astra7]

i watched my grandfather and uncle die from pd.......

[beehive23 in reply to beehive23]

im down to 41% vital lung capacity as my lungs collapse due to rigidity i also have sleep apneatic events every 3 minutes through the night..its palliative time. just because your not there yet i am ..ive had pd for 20 years.....and to damn close to nursing home at age 53....and gold stage 3 copd. i suffocate slowly every night as my lungs fill with fluid. hang tough.

[Astra7 in reply to beehive23]

Sorry to hear you are so unwell. I try not to think too much about the future, but I am still functioning ok.20 years with PD sounds exhausting.

[beehive23 in reply to Astra7]

Hospice is the end game...palliative care models integrate treatment and give you a team, the palliative care model is being introduced all over as young onset etc get to late stage pd. its devestating to get to this step...can barely function at all...cant sleep, rem sleep disorder, totally useless right arm, cant stand for longer than 5-10 minutes and cant breathe without bi-pap. hang tough. youtube.com/watch?v=PaJu6eQ...(Not working as expected?)

[park_bear]

My list of interventions that may help reduce progression. Thiamine, exercise, cinnamon and Qigong particularly helping me:

• Vigorous daily exercise

• High-dose thiamine, courtesy of Dr. Antonio Costantini highdosethiamine.org/ healthunlocked.com/cure-par...

• Cinnamon, extensively researched by Prof. Kalipada Pahan, PhD. My report healthunlocked.com/cure-par...

•Mannitol parkinsonsnewstoday.com/202...

healthunlocked.com/cure-par...

• Ambroxol healthunlocked.com/cure-par...

jamanetwork.com/journals/ja...

• Qigong – it is not for everybody but it is working for me:

healthunlocked.com/cure-par...

[rebtar in reply to park_bear]

Bear, I’m getting back to more vigorous exercise bit by bit, after a year of health challenges. Spinal stenosis and “age related deterioration”, broken shoulder, struggles with sleep.

I find that some days exercise energizes me, sometimes it exhausts me. I never know if it’s wise to push it when I’m tired. I guess I’m the only one who can figure that out for me, but I think you’re a wise soul…if you have any suggestions.

[park_bear in reply to rebtar]

The best exercise is whatever you enjoy doing and leaves you feeling good, because that is the exercise you will stick with. The details will be quite different from one person to another- only you can know what is right for you

[glenandgerry in reply to park_bear]

Thanks for this - what's your HDT daily dosage?

[park_bear in reply to glenandgerry]

I have settled on 500 milligrams once in the morning. The best dosage is a very individual thing.

[glenandgerry in reply to park_bear]

I know, I have tried all sorts of different doses on Glen over the years. Funnily enough we’ve also settled on 1 x 500mg in the morning as well.

[Boscoejean in reply to park_bear]

is Ambroxol a prescription from a doctor?

[park_bear in reply to Boscoejean]

Am sending you PM

[Boscoejean in reply to park_bear]

thank you

[Bolt_Upright in reply to park_bear]

Two questions please park_bear:

1: Is this your complete list of supplements? If so, I appreciate the brevity.

2: How much Ambroxol are you taking?

[park_bear in reply to Bolt_Upright]

Not my list of supplements. These are things that have been reported to help. Not taking mannitol or Ambroxol.

[lovebobbi in reply to park_bear]

Sadly, this doctor passed away from a covid infection

[park_bear in reply to lovebobbi]

Oh my. Sorry to hear that. Thanks for your update.

[lovebobbi in reply to park_bear]

what brand of thiamine do you use?

[park_bear in reply to lovebobbi]

I use the Vitacost brand. Looks like they are out of stock at the moment:

vitacost.com/vitacost-vitam...

[beehive23 in reply to park_bear]

tried all that along with mucuna etc. for years......didnt help. hang tough.

[laglag]

Try Rock Steady Boxing. You won't regret it. Look on their website to find an affiliate near you. There are over 800 affiliates around the world. rocksteadyboxing.org

🥊

Keep fighting!

[gginto]

Have u tried taking Melatonin to help sleep? Can u exercise/speed walk daily? I really like taking Rhodiola with L-Theanine first thing in morning for anxiety/mood- totally helps me. I also do weight training. QiGong. Other supplements that I KNOW helps me mentally/emotionally: Lion's Mane, Ginkgo (liquid), Magnesium, to name only a few. From what I have read Parkinson's NOT a terminal condition. In fact people with pd can live as long as people without it.. just more challenging and having to manage with various symptoms.

I take a moment to moment - one day at a time philosophy - There are small victories along the way.. Try and keep moving, stay positive and read up on as much as u can- EXERCISE daily.. Good luck!

[kaypeeoh]

I guess lots of bromides could work here: Let your reach exceed your grasp? Fight the good fight? Dream the impossible dream? The commonality seems to be to keep trying shit that you can't do; It's the effort not the goal. It's the race not the finish. Personally I'm gonna trudge out to the shed and get on the treadmill. If my balance is unsteady I'll use the hand rails.

[alaynedellow]

I movedaway from london life to a rural french countryside life. Gone is central heating n on with chopping logs for fires. But heh when sun is out i have a swimming pool. Life is still good its just a different life. Just going inti 2nd xmas with family banned from visiting france so alone but will go to friends for day. Its lovely but not the same as hug with my sons.

Everything changes in life its hving the right mental attitude, rather than dwell on it - embrace change because if you think theres lot you can't do because of age anyway.

We not guaranteed a long life and even though i hv pd i in better shape than ´normal' people.

Enjoy your life and dont sweat the little stuff.

[kaypeeoh]

Two rules to live by: #1 Don't sweat the small stuff. #2 It's all small stuff.

[EmmaSmith4]

Mental health plays a major role in our lives. If our mental health is poor then we are not able to focus on our goals. There are some steps we can take for mental improvement such as:

We can do regular exercise to stay active.

Take such a green diet which has a mixture of nutrients i.e. good for the brain.

Stay in touch with your family and friends.

Accept who you are, focus on your abilities.