Planning life after diagnosis : prioritiz... - Cure Parkinson's

Cure Parkinson's

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Planning life after diagnosis : prioritizing what is important, being realistic about limitations, coping with anxiety ??

cclemonade
cclemonade

I need advice from those who have been through this but I’m also having a very hard time with anxiety and depression making facing the reality of my situation very difficult. I’m a planner by nature and having a new PD diagnosis makes planning the future very emotionally difficult.

I am 45, married with two school age children. I am new to knowing I have PD. First I dove head first in to researching what I can do to protect my health as much as possible. I am so grateful to have learned so much from this forum; the supplements, medication info, the exercise, etc etc. I think I have pretty much maxed out on all that until new things are discovered and shared. implementing lifestyle changes and modifications felt proactive and has helped me cope with this new reality but now, with nothing left to implement, I’m forced to face reality. This is it. I have Parkinson’s. I don’t know how long I will be functional for, how long until traveling will be too difficult, how long before I need help with activities of daily living, etc etc.

I’m writing to ask if you can please share how you have prioritized your time post diagnosis and if in hindsight what you would do different? I’m attempting to get an approximation for how much longer I have to do things.

Thank you for reading this. I’m grateful for your help.

24 Replies

The best advice I was given was don't make rushed decisions after diagnosis. My biggest regret is that I ignored that advice. Take your time and slowly get used to your new world. Don't make decisions in haste.Take care.

Manypony
Manypony in reply to Cleo16

I too made hasty decisions I was not in a good place to make

The French are pretty blunt - no bedside manner (although my wife tells me I'm a fine one to talk). My first neuro I visited on a referral from an ENT specialist because, after a bad infection and eustacheon tube problem had apparently finally resolved, my sense of smell hadn't returned. The neuro did a thorough exam and announced "l'olfaction retournera. Vous avez La Maladie Parkinson". (March 16th 2018). When I protested he must be mistaken- he ordered a DATscan with a gallic shrug and said with a reassuring smile "Vous n'aurez pas besoin d'un fauteil". I came out of the clinic, and on the way to the car texted my wife, who was in a business meeting, "Parkinsons" -hence her comment about my own bedside manner. My father had stage 3 going on stage 4 PD at the time. "Vous n'aurez... " translates as "You won't need a wheelchair (fauteil roulant)

I told him at my DATscan interpretation confirmation, I wasn't interested in conventional symptomatic remedies - I wanted revolutionary new disease modifying solutions (which I'd started researching in parallel with trying to prove it was DIP from amlodopine) and he referred me to the research team at Toulouse Purpan, where I eventually joined SPARK

Get to the punchline Winnie

There is more than one sort of wheelchair Parkinsons can put you in. Obsessing about it day and night is another form of wheelchair. A third wheelchair are lifestyle changes like diet which go beyond healthy, and restrict your quality of life during the best years remaining to you.

My birthday is 17th March- the day after diagnosis, and a Friday. My wife had a secret birthday treat planned. I apologised, said I didn't know what it was, and asked her to cancel. It was a surprise visit, their first, from my kids. Sue had to spoil the surprise by a day to avoid me cancelling, but we went skiing as planned and had a great weekend

I plan to keep skiing as long as possible, and playing tennis, and ping pong, and pool...

I found a balance. Controlling what I can, learning and keeping alert for possible real developments in PD, appreciating a ton of stuff is happening (even without me running it), although it won't be fixed by next Thursday, managing stress ( I have music, and my therapy dogs - Keisha is a great mood sensor and cuddler). Above all focus on what you have and can do, not what you might lose one day. You can be sure, like life itself, it is a one way travel, and the best days you will experience are the next ones. Don't waste them obsessing about PD

And, probably, you are not going to discover the miracle cure the scientists have missed. And it probably isn't going to be growing in your garden -if only you'd looked. And actually, while we'd rather not have it, I take strength from those here who have lived with and are living with the disease after 10 or more years , and resolve to enjoy what I can, hope for an accelerating rate of improvements in treatments, and an eventual cure, and participate where I can.

One of the Cure Parkinsons directors in one of the early webinars I attended said

" I have Parkinsons Disease, and I am an optimist. Only one of those is incurable"

Very well put.

laglag
laglag in reply to WinnieThePoo

Wow, that was good.

Beautiful WTP

buzbyc
buzbyc in reply to WinnieThePoo

Love the "there's more than one wheelchair" comment - that one's going to stick with me!

At time of DX the neurologist prescribed meds for anxiety (and depression). Made a HUGE difference.

The time frame i imagined was totally inaccurate.

Im six years dx and still doing most things albeit a little slow sometomes.

I found mannitol brilliant for mood n anxiety. I changed my life by quitting work n miving to rural france. I miss my kids esp this year with lockdowns but life is what you make. My little brother died in october at 55 of suddden heart failure and he had everything to live for- i'd change places with him so he was still here.

Enjoy the time you hv n relax you dont know how long u hv n PD not the worst. I adapt but i'm not defined by it

Charlotte, live your life😀 take your knocks and get back up. Yes life will be different and at times challenging. But learn your boundaries and keep challenging them to see if things are as bad as first thought or your brain is protecting these thoughts. Don't dwell on it for the best you can, do hobbies, never give up researching, do things that build up serotonin, this will assist greatly with your anxiety and depression. Think outside the box, eg: when researching, don't just focus on PD or a cure, research the brain, and how it controls the whole body. I started to broaden my research and I understand things better but it gives more hope and a better confidence that the things I'm trying are somewhat on the right course to affect me for the better. Think negative you will manifest negative, like attracts like.

Hope this helps you out mate

breathe... just breathe. Take a moment to be in the present, enjoying the simple, abundant beauty and gifts in the people and world around you... You have today- which is a gift, in and of itself. Take a moment to sit in gratitude and breathe....

cc,

You've already received some excellent advice so I'll just add a few things.

o Accept the diagnosis

o Take action (exercise/ keep moving throughout the day, eat healthy, research-keep updated on new things). Most older "remedies" will have already been researched and if those things were a cure, we would probably know about it. This site would know if there's a cure and/or something that would help.

o Listen to your neurologist for the most part, but also listen to how your body responds to things, as every PwP knows "everyone one is different".

o Meditation helps stress and stress is not good for PD.

o Look in the mirror every day and say "I have Parkinson's disease but it doesn't have me!"

o Strive to keep positive. By keeping positive you will help yourself and be an inspiration to others also.

o Keep fighting and keep smiling!

One of the biggest challenge is that people grieve for the life they had before the diagnosis, it is important to "accept the things we cannot change". This does not mean defeat but acceptance with grace. Engage with local support groups; listen to meditative music found on Youtube ie. Happiness Frequency which produces endorphines, dopamine & serotonin - it can change the mindset to live with grace. We too dove into all the information we could find, done a variety of exercises, research and more - at this point, we will do what hwp is able to do and enjoy our time together. I pray to find strength and love through God, love of friends and family.

I am a 55 year old male who was diagnosed with PD in 2013, although I suspected I had it as early as 2009. I am fortunately still able to do most of the things that I love to do, although they may now take a little more effort. I try my best to live in the moment or in it's vicinity. There is nothing I can do to change the past and I'll deal with the future when it becomes the now. My advice would be to let things unfold a little before you start mapping out your future. Don't let PD define you. Let your diagnosis open your eyes to how beautiful and amazing life is and take every available moment to engage with your kids and experience your surroundings. Remind yourself to be grateful and compassionate. Let those you love know that you love them and keep your sense of humor.

Kia17
Kia17 in reply to DJJD3

👍

I was dx. over 7 years ago. Worked full time until 2 years ago and retired at 68. Went back to work within a week and worked half time. Same job but at a slower pace. They hired someone to replace me so I basically worked for her. Still working at 70, I'm moving to Florida from NJ and they asked me to work remotely. Also will be lecturing remotely for a university. The reason I'm bringing it all up is to show you that your life isn't over. Yes some things may change...I now use meds, I am a little slower etc. But I'm still enjoying my life. Full time work is too much but part time gives me flexibility which is important. My suggestions: find an exercise you like and stick to it. Surround nYourself with positive people. I joined several online groups, and left Several that didn't work for me. I meditate. and have become more aware of changes in my body. Find a doctor you trust and can relate to, use an "MDS" if possible. I modify what I do. Still do family dinners but I do more prep work and spread it out. As a PWP once told me, " do what you can for as long as you can, then just do something different, ". Yes your life will change over time but it is not the end of your life. We are here for you

cclemonade
cclemonade in reply to Rocke

Diagnosed at approx. 61 and you kept working and doing speaking engagements. Wow. That’s quite amazing. That’s very uplifting to hear. I’ve been feeling very disempowered. Accounts like yours are very uplifting.

I’m in NJ as well.

Do you have a NJ MDS that you would recommend? I’m going to Mount Sinai soon. Going to NYC was not my first choice but I haven’t found the right doctor in NJ.

We contemplate an eventual move to FL.

Kwinholt
Kwinholt in reply to cclemonade

Cc, I see my PD neuro every 3-4 months . I am so fortunate, he is wonderful and always very supportive. I hope you find one that listens. ❤️ K

My original MDS was fantastic but he retired 2 years ago. My second MDS was good but went out on an extended sick leave. With covid I never saw my 3rd MDS, just zoom visits. Now he retired...I'm not impressed with anyone else in the group. You can see what they say in NY. You usually only see them every 6 months. I was also considering going into NY if we weren't moving. I'm from Central NJ.

Put up your picture where you can see it, and remind yourself repeatedly of who you are.

You are not Parkinson's, annd it doesn't define you.

You are a beautiful soul who has lived a fulfilling life until now, and will continue doing so, no matter what happens.

You were / are loved by people around you, so enjoy each moment of your life, enjoy the love.

Life is too short to waste moments worrying of a future, which may never come.

To Hell with Parkinson's!!!

cclemonade
cclemonade in reply to JayPwP

Jay, thank you my friend. Sincerely, thank you so much. I’m saving an image of your comment so that I can refer to it often because it is really helpful to me.

❤️

You have received some very good advise, read it again slowly, I did.

This August will be the 20 th anniversary of the PD diagnoses. I am 73 .

I retired at 62. ( very good move)

that summer I installed a double wide double length driveway in bricks, single handed (well almost)No experience ,turned out great

Gave up driving my old Jeep at 65, bummer freedom gone, but it was necessary , right thing to do.

66, Installed hand holds every where in house, walk in shower. Taught My grandchildren how to use the lawn mower and vacuum cleaner and how to make some money.

72 had a stair lift installed on basement stairs, Garage door with opener, and two electric scooters for use on paved trails. (should have done all earlier)

Between 66 and 72 did lots of stuff but its all a blur, It is called life,

I have been lucky, my wife stays with me (do not know why) and my children come around , old friends call and drop by, neighbors say hello and watch out for us. We live in the same small house we purchased 46 years ago in a good neighborhood close to the lake and walking trails in a small city.

I made mistakes, but we all do and it is now your turn. Good luck . you can do it.

cclemonade
cclemonade in reply to GymBag

Thank you for the practical advice. I sincerely appreciate hearing how others have coped, adjusted, and planned in light of having PD. It helps me to plan our future.

One should not press the panic button, when learning of a diagnosis, of Parkinson’s Disease! Instead, my advice would be to use the tool that ‘knowledge is power’, in finding out, from PWP, how to handle the particular problems, that can be presented as one is learning to live with having PD, and to determine practical day-to-day application of suggestions to help manage symptom control! This forum is a good way to learn about PD, and the application of different treatments and ideas to help control the variegated aspects of dealing with neuro degenerative processes involved, with the diagnosis of PD. Finding a practical approach to the hurdles, of some annoying Parkinson’s symptoms, is vital to dealing well with having PD. Because it is usually a slow-moving progressive disease, one can learn to live with having it, and yet, finding a good plan going forward can, over time, become a near normal aspect to dealing with changes, in one’s ability to ambulate, use utensils and tools, balance, stiffness, and other attributes of having this chronic, progressive ailment. So this is my advice, based on 5 years, of living with a PD diagnosis. Also, learning about the scientific aspects of the process of neuro degeneration, is helpful, in regards to understanding symptoms, and possible progression of PD.

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