Looking Good - Feeling Lousy!

[Ianfrizell]

Hi all

This is my latest vlog, about having an "invisible" illness, such as Parkinson's Disease.

youtube.com/watch?v=bRp3L8U...(Not working as expected?)

Cheers,

Ian

[paddyfields]

Depending on the other person I am known to reply to the stock enquiry with "I'm good in parts" (like the curate's egg.)...or....I'm, still vertical to someone I haven't seen for a while where the enquiry is less likely to be a matter of form. Although, 8 years from diagnosis I personally, am not so affected as many, I wish to avoid giving a false impression of PD which is for for many a daily struggle.

[Jeansm]

So, so true. There are good days when I'm pleased that I look "normal" and others where I wish I could wear a sign saying "leave me alone". Parkinson's is a very difficult disease to understand if you've never been exposed to it. And, apparently, even health professionals who should know better struggle. A lady at the gym who is a GP told me that I didn't look like I had Parkinson's. The thing I dread the most at this time of year is being asked where we are going on holiday. I haven't been able to take a holiday due to anxiety for about 5 or 6 years. Impossible to explain, and as you say, no one really wants to know. I have puzzled over how to raise awareness since volunteering to help at a local PD awareness day. We were handing out information leaflets in the town centre. The only passers by who stopped were those who already had a family member diagnosed and simply wanted to make a donation.

[ddmagee1 in reply to Jeansm]

Indeed, it is very frustrating when people don't seem to care or understand. It would be extremely difficult, when a physician might brush one off, for sure. Being on Sinemet does wonders for obvious tremors, with me, so when somebody says something like they don't believe me when I tell them I have PD, I usually am well prepared. I have been diagnosed by three physician's, including neurologist and movement disorders specialist. I sometimes tell people I have a neuro-degenerative disease, and to look it up in a dictionary. Most of the time, however, I just try to discreetly avoid talking about health problems to most people. I've learned over many years, after living with several chronic health conditions, that many healthy people could care less and are bored when chronically ill people complain or go on and on about this or that medical condition. Of course, there are exceptions. Some wonderful people truly care and would like to help in any way they can.

[paddyfields in reply to Jeansm]

I think even the medics are misled if you happen to look "normal" as I have most of the time

I wore a monitor for five days to assess the dyskinesia I do suffer with but Mr.P failed to oblige in that period with the day long squirming I g et, not particularly related to dose and I don't think my PD nurse appreciates how distressing it is when it strikes or even believes med given the graph results from the monitor. Apart from keeping me slightly under-medicated she has offered no solution to try for this exhausting squirming.

[Serenity_finaly-1 in reply to Jeansm]

You do not want to go on holiday because you are just being difficult. You isolate your self which is not good for you. You do not go to church anymore and you should. I do not know what is wrong with you but I just saw a man doing the American Ninja and you will not even fly? You are letting the illness overtake you and you are not fighting back. You are ruining our good time because you have become to difficult. You need to fight to get disability and be put on medicare.

( they will not get it. but YOU is at the center of all the rebukes )

[aspergerian]

Ian,

Thank you. Another informative, concise presentation!

[etterus]

I usually tell people " If I get any better I'll think I'll have to pop." If questioned further I tell them chronic Parkinson's give me the sick head syndrome. By the way what kind of sports car? I had to give up my prized V12 e type with a 6.2 L stroker and six Webbers.

[Ianfrizell in reply to etterus]

I always wanted an E-Type - too expensive for me, though! Mine is a 17 year old Porsche 911 Carrera 4.

Cheers,

Ian

[Jeansm]

MS sufferer but similar issues:

bbc.co.uk/news/av/disabilit...