Feeling scared about diagnosis and surgery

[altie]

Hello everyone, I’ve been reading posts here for a while but finally gathered the courage to share my situation. Over the past year, I started noticing some symptoms like slight tremors, stiffness, and fatigue. It made me really anxious, especially when Parkinson’s disease was mentioned as a possible concern during my diagnosis process.

At the same time, I was also dealing with cancer, which made everything feel even more overwhelming. I was extremely scared and kept delaying decisions because mentally I wasn’t ready to handle both situations together. Eventually, I had to go through DIEP flap breast reconstruction surgery, and honestly, that phase was one of the toughest in my life.

But looking back now, I feel that taking that step gave me a bit of strength and clarity. I’m still in the process of understanding my neurological symptoms and going through follow-ups, but I’m trying not to let fear completely take over.

I just wanted to ask if anyone here has dealt with something similar — managing Parkinson’s concerns while also going through another major health issue. How did you cope mentally?

[GracePUKMODTEAM25]

Hello @altie, thank you for sharing your first post. We hope the community will share their support and experiences to help.

We’re deeply sorry to hear of your cancer diagnosis. We can see how having existing health difficulties alongside your symptoms has made everything feel more overwhelming. We hope you’re recovering well after your breast reconstruction surgery, and we are sorry to hear that it was one of the toughest phases in your life. We’re glad you feel it has given you strength and clarity, and you are now looking to understand your neurological symptoms.

We’ve got information on how Parkinson’s is diagnosed and what to do next if you’re concerned about your symptoms on our website, which you might find helpful: Getting a diagnosis | Parkinson's UK

We are also at the end of the phone to listen and to talk through any questions or concerns you might have. You can call for free and speak to our trained advisers, including specialist Parkinson’s nurses: 0808 800 0303. We are closed today, but back open tomorrow from 9 am to 6 pm.

Take care

Parkinson’s UK Moderation Team

[Tot]

Hello altie, welcome to the forum and well done on finding the strength to go through all that you have, You ask an interesting question and you will find that many of us here on the forum have a dual diagnosis and some more than two.

Understandably you set your question in the context of a major health concern, I am of the view however that your question could equally apply to anything that gives rise to an issue someone is finding difficult. Specifically I find it interesting that you ask about coping mentally because, for me, it is mental strength that can make the difference between managing an issue well or not. At this point it is worth remembering that there is no right or wrong way to cope; it’s all relative and depends on many variables too numerous to go into here but can be summed up in saying personality, experiences etc can all influence how one copes with life’s challenges. Nothing is black and white there may even be differences in what people perceive as managing well or bdly and who’s to say one is wrong and the other right.

For me maintaining a positive mindset is key, the most important thing I can do for myself and you don’t have to read many of my posts here on the forum to understand how important it is to me. Not always easy, I have my moments but by and large it’s how I choose to cope with whatever life throws at me. I have got quite good at fading out the negative voice that can become so loud and difficult to stop and sends my brain into overdrive and instead let the voice of reason, hope, whatever you want to call it, take over, It’s not everyone’s way, but it works for me. The link below may be of interest to you.

Finally again it’s not everyone but I have found living in the present not keep going over what has already gone and can’t be changed nor try to second guess tomorrow helps. After all, as I have said more than once on the forum, this 24 hours is a one off, there are no repeats so why not make it the best it can be.

Tot

Do you have a Parkinson's Mantra?

Hello all I was reading some replies this morning and as I was reading I realised that many of us use a few words to sum up our attitude to Parkinson’s. My own, if you have read some of my posts will be familiar to you and to these I add a few I picked up today. I personally find it quite uplifting that others share my view that Parkinson’s can be challenged and simple words like this can be real motivators, so I love reading these sorts of things that crop up naturally on the forum. Howeve…

[Steve2]

Evening Altie .. Sorry to hear what you have gone through, yes it does make us stronger.

You asked if anyone had gone through anything similar. I am a 72 year old single man, slim, teetotal & have never smoked. I had never been ill, then when I was 59 I had a very aggressive form of prostate cancer. The night before the operation I was in a room on my own. I had to remove a clock because the ticking drove me mad. I had my prostate removed, I thought I would die, but the cancer was contained & I was ok & then 4 years ago I got diagnosed with Atypical Parkinson’s. I had gait freezing, balance issues & shaking when I carried anything. 2 years ago I had a bad atrial fibrillation attack & am on a lot of medication for that. Then around 8 months ago I discovered I have a Thoracic Aortic aneurysm that will need open heart surgery & about a month ago I found I had Fibrosis in the tops of both lungs.

The more I get wrong with me the easier it is to deal with. I play Indoor bowls 4 times a week & that keeps my spirits up.

I use artificial Intelligence, Ai, a lot & that helps me. If I have a concern I type it in & get an answer. I think ignorance is the most worrying thing. I feel I know everything about my conditions.

Once I discovered what “my Parkinson’s” is, I understood it & can deal with it. I know what makes me lose my balance & I avoid doing that & I know what makes me freeze to the floor & how to combat that & I get others to carry my cup of coffee to my table.

I always look forward to my next bowls match & am outgoing, I don’t hide away when I bowl.

I am seeing a cardio surgeon mid June & no doubt will have a chat about the future.

I hope you have found some of the rubbish above interesting. I do find “talking“ about my health helps me deal with it.

At bowls I tell everyone I have Parkinson’s I’m not ashamed of it. Not being able to stand for more than a couple of minutes needs explanation. I also fall over now & again & the other bowlers have got used to it & do not worry.

I guess my advice is to be yourself, enjoy your life & don’t worry. There are many men, women & children worse off than we are.

Of all my ailments Parkinson’s is the easiest to deal with. It is not going to kill me just cheeze me off now & again.

Best wishes

Steve2

[Lar]

I have heard similar accounts of people developing pd symptoms after a stressful time .

I myself developed pd symptoms after a stressful situation and I know someone in my village has had the exact same experience.

I believe the nervous system is compromised and çalming the nervous systems will improve symptoms and relieve the stress. I was diagnosed about 5 years ago and according to the neurologist it is still mild in my case and he did say I don’t know what your doing but keep doing it.

My routine is intermittent fasting, exercise in the morning, short walks with the dogs.

Cutting out sugar except on special occasions.

I also use a vagus nerve stimulator and red light therapy and I use a nicotine patch 7 mg twice a week some doctors believe it is neuro protective.

I try to keep calm not always successful.

I find YouTube and Parki bot useful as a information resource.

I also find my symptoms are worse when I am stressed which correlates with the onset of symptoms.

My advice try not worry and research as best you can.