Challenges facing a new patient with PD?

[med_student]

Hey guys,

I am a final year medical student with an interest in Neurology. I am currently writing an essay on the challenges facing a new patient with parkinson's disease.

I thought the best place to find out would be here, from people who have been diagnosed with PD and who can recollect the initial challenges they faced and the hurdles they climbed.

I am really interested to hear your experiences.

Take care x

[Buttons2]

Welcome to BT. I was told "possible Parkinson's" by a few ignorant medical professionals. They were wrong.

However I've been closely involved with a couple of people with Parkinson's. One thing I want to point out to you is the mental anguish they feel. They KNOW they are declining,they know there's no cure. They are depressed. They feel embarrassed if they drool. They HATE what is happening to them. They can go broke just from all the meds!They are constantly afraid of falling. And when they do fall it means just more issues to deal with. Sometimes surgery,then rehab in a nursing home. They have a brain but are treated as though they are children.

I did alot of research & I want to refute the idea that Parkinson's either manifests physically or mentally......this is total BS!! They can hobble into a mall to shop & then get lost & scared & have to call for someone to come get them.

They can make dreadful decisions regarding finances & are vulnerable to sales people,etc. They can think straight one day & act like in the late stages of dementia the next. We're all familiar with the trembling,stumbling,etc. but the fact is we don't realize the embarrassment this causes them! Other people get impatient & angry. Maybe some of this is fear it will happen to us?

I've been told how much they just want to die,get it over with cause they're not gonna get better & don't want to be a burden. How nobody cares. Some of this might seem irrational to us but it's not to them that are suffering!

I hope you have the time to do alot of reading here on BT. Many of us can give you alot of insight into our experiences with neurologists! Number one gripe will probably be how they seem to be elitist & we are so scared going to a doc for any "brain" issue.Not at all the same as going to our regular doc's or a bone doc or anything else. We only have one brain & we need someone that take's us seriously,listens to our fears,and treats us with the utmost compassion!

I suggest you visit a VA hospital & seek out the patients with Parkinson's.....be kind & tell them you care. Maybe now that we have a new leader in the US they actually have some HOPE with stem cell research. Perhaps Booth Gardner has a website & he can give you some clue of how it feels. Michael J. Fox. Janet Leno,and soooooo many others.

[med_student]

Buttons...

Thanks you for your reply...that really moved me. I am so sorry to hear of the negative attitudes you (and others) seem to have experienced with your neurologists. I sense you are from the USA? I think things are a lot different here in the UK, and the physical conflicts of PD are regarded with as much importance as the emotional and psychological conflicts.

When you were first diagnosed, where your symptoms physical?

If you don't feel you can be fully open with your neurologist, I suggest you find one with whom you connect - being able to discuss every aspect of your disease is so important for your sense of well-being.

Take care, all the best

[Buttons2]

OK, I realize things are different in the UK. I know someone in Wales that waited months to finally get a MRI,then weeks to get a consult on the results. And still no definative results much less help.

I think I stated in my first sentence that I didn't get diagnosed with Parkinson's? Fact is I gave up on all doctor's after trying for years to get help. One neuro wrote down he suspected I had Cruetzfeld-Jacob's disease! Do you realize how rare that is?

My experience with neuro's isn't the worse,nor will it be the last you'll hear.....so be prepared.

From what I know of the UK healthcare system you will be allowed to treat a patient without the constraint's we have here over the methods used,testing required,etc.

If you're interested & have the time I will send you a PM about my friend in Wales. Who knows you just might be able to write about her story (she doesn't have Parkinson's),I cannot think of a better project myself cause this young woman really does deserve some help!

You might get more replies here if you posted on the New Member's thread......wishing you well & kudos to you for getting through med school.

[VinceW]

Hi med_student,

I wrote an article on my diagnosis, here's a link to the original text. I hope it helps, and would like to thank you for your interest in what was, I'm, pretty sure, a traumatic time for everyone in this forum.

http://socialnetwork.meetup.com/1060/messages/boards/thread/6254401

If you have any questions re: what I am banging on about in the article, please feel free to ask.

Vince

[Milly]

Which part of the world are you from?

[Milly]

Hi in York....

...from Southampton here in the UK.

Being diagnosed with PD in Southampton.....here goes!

I was 44 when I visited my gp with strange symptoms that i didn't have a clue about! My gp on the other hand recognised that there was some major neuro problem and refered me to the hospital straight away. After my initial consultation at the hospital, i was told that they required me to stay in hospital for 2 or 3 days to find out the cause of my symptoms. So just b4 my 45th birthday, i found myself at Southampton General Neurology dept. I still felt that I shouldn't have been there, there were so many "ill" people there with Parkinson's, MS, etc... I felt a bit like a fraud, taking up tax payers money when there really was nothing that wrong with me! In the 3 days that followed, i had blood tests, eye tests, co-ordination tests, hoards of medical students playing "guess the illness" and giving their diagnosis in front of me! At the end of the three days, I had had a visit from the "top" consultant and the registrar who very matter of factly told me you have Parkinson's Disease! The "top" consultant asked me if i thought i needed to start taking medication for my "Parkinson's Disease"....I said no, but thought "why are you asking me this" surely you should know! Anyway he actually ignored my "no" and started a conflab with the registrar about what drugs i should be taking...."hello....i am still here" I was then told that i could go home but to make an appointment with my gp, who would prescribe my meds.

Ok, i thought i can go home...with what! The news that I have a serious progressive illness that I know diddly squat about...that no-one in the medical proffession of one of the "best" neuro centres on the South Coast had the insight to maybe point newly diagnosed patients in the direction of a councillor before they left to go home with a million and one questions buzzing around their head! Thinking about it now, 5 years on, it is shocking that people can be just left in limbo like that!

How did I cope...well when i got home, i felt totally deflated....depressed...and non the wiser about how Parkinson's disease was going to effect my life. So shrugging off the negatives, I then got on the internet and found Brain Talk Communities, which I have to say was my life line and councillor for the following few months. I looked up everything i could find about PD, and felt much better because finally knew what I was dealing with. My symptoms then were minimal, and I started taking requip for my stiffness and slowness of movement, which sometimes made me horribly sick, in fact still does. My biggest problem with having PD was the total feeling of exhaustion, feeling like someone had drawn out every bit of energy I had leaving my body useless...still my biggest problem now!

Five years on...and I feel that the "honeymoon period" is coming to an end...although i still work and drive, a big **** up with my meds, courtesy of (someone in the medical proffession) has left me feeling a lot worse in all respects of my illness.

I recently met a guy, who had been diagnosed with PD for 3 days before I met him. He had a tremor which was very very prominent...we got talking and talked for a long time...he was so relieved to have met me, and I felt that in a way i was acting like a councillor for him, because I knew what it was like and had first hand experience! He told me afterwards how helpful our chat had been, and I was pleased to have been some help...but there is an obvious gap here which needs to be filled. I have been through a roller coaster of emotional and physical changes during my "honeymoon period" that i am putting pen to paper in he hope it may be published to let newbies know the ins and outs of having PD. The medical proffession may give you advise, sort out a drug regime for you, but, and this is a BIG but....unless you have PD yourself, you have absolutely no idea whatsoever what its like to have it!

Sorry for the essay lol...hope this helps!

Jill

[med_student]

Sorry buttons...i realised after re-reading your message, you just wrote it well i thought you had experienced all those things personally. of course i'd be interesting in hearing about the experiences of your friend from wales.

vince, thanks so much for the link - i'll have a good read through it all in a mo.

milly, i'm from northern ireland, but i study in scotland. the time of your diagnosis sounds horrific - inpatient diagnoses for any disease are broken to patients so badly it makes me want to scream watching it. i always try to go back to see the patient who has just been told something which the consultant feels is so trivial on the ward round in front of the doctors, nurses and students...yet it could change that persons life. so many questions go unanswered because when they 'got their chance to ask' they were still taking in the news that they had nothing to say. don't get me wrong, some doctors are fantastic at caring holistically for their patients, but generally i feel it is something which needs worked on from an early stage in their careers.

i'm glad you found the right place to get your questions answered - after all, there is no-one better to discuss your problems with than someone else who is going through/has been through the same thing!

you guys are immense. thanks so much for sharing your experiences - i'd love to hear more! i'll let you know when i've finished the essay and if any of you are interested, i'll email you a copy to see what you think.

thanks again...people like you make me realise that i need to step into each and every patients shoes to wholly care for them, and not just focus on their physical complaint...x

[VinceW]

Hi med_student

Just re-read your post, and thought I'd add a bit more, in keeping witth your essay title
"people who have been diagnosed with PD and who can recollect the initial challenges they faced and the hurdles they climbed.


Not 'looking' ill (looking drunken) which at least in my case led me to feel like I was malingering.
The meds. GOOD GOD they hit you like a bag of hammers. Nausea/confusion etc.
A very uncertain future
Reaction of employer
Family - be it your elders/descendants, or planned descendants


Assuming your essay will conclude with recommendations; may I make a couple of possible suggestions that I believe may have helped me at least?

A 5 or 10 minute telephone appt. with a PDNS perhaps a couple of days post-diagnosis, so the patient is in a more comfortable environment and is more likely to have prepared questions.

Sign the patient off sick, I for one was a liability at work the next day and had been too shocked to call my GP en route home from the hospital. It did neither myself or my employer any favours.

I know it sounds silly, but one of the Parkinson's Alert Cards may have actually reassured me a bit, had I been handed one upon diagnosis as i) it's something tangible so you 'know' what you'd just heard ii) It serves
as 'proof' when telling your friends and family (they won't need it, but I for one would have been reassured by it).