Thread: I finally got a diagnosis.

I'm not coping very well with this disease! I had a doppler scan done on the carotid arteries and a ecogardiogram done to make sure my vitals are getting sufficient blood, results were good. My Doctor has doubled the dosage of kinson tabets. I'm still at the tweaking of meds, but the body is slowing down further. I walked 10 paces inside the house aided by Heather on Wednesday to get to the Lounge chair and I passed out and went down like a ton of bricks and hit the floor with my head, then Heather and my son had a job to get me off the floor as I was a dead weight. With a bit of a head ache and sore knees I'm was ok. I have been Vegetating lying on the bed or sitting mostly as any attempt to walk brings on the feeling of falling again due to hydrostatic blood pressure and standing for more than a couple of minutes starts the excruciating muscle cramps

Yesterday i spent many hrs off and on lying down, I had a regular customer call around after hrs to pick up a part, I got up and sat on the end of my bed to talk to him , Heather was thee in the room when all of a sudden I fell back wards onto the bed and was unconscious. I was out for about 3 mins, then became semi conscious Heather said my eyes were lazy and half open and i was muttering. I noticed the customer was holding my legs up trying to help Heather get me onto the bed properly.
My NDIS application which I have applied for only gives 28 days to submit but getting additional evidence reports however is difficult in the time frame, I was told by one there was a 26 week wait but they could prioritise me to 12 weeks. NDIA can allow extensions which I did apply, I tried to get a 3rd extension and was told I rang them 2 days too late and had to re apply. This system is really broke no matter how they make out how good it is for people. I now have an appointment 6th Dec with some one to assess me with capacity reports etc.
I got really depressed as trying to deal with this horrid disease and have to comply with the system is taking its toll , I tried to see my old Pysch but she was booked out. thought of ringing life line, but some how I got through the days.

My doctor says not to dwell on my illness , but it effects me 24/7 the symptoms are there reminding me all the time. I have been researching and all says there is no cure, my Doc says not to Dr Google. But its hard not too. Thinking there might be something out there, I have many unfinished projects around the home and dont want to leave Heather with them, I just hope My condition can improve to give me some time to finish stuff.
i even looked at my life insurance policy, re terminal illnesses, clause says got to die in within a year and if they believe it will happen with in that time. Then next thing is to get our wills updated.
One thing I noticed is when you are really ill people you thought were your friends seem to avoid you. It must be the thing about them being uncomfortable about being near serious illness.
Sorry for this long winded post, I'm not after sympathy, I just needed to Ventilate.

Gday Mario,

Tough times indeed.
I have a bit to do with the NDIS - have helped a few people get applications in with some success.
Dont worry too much about deadlines for submission etc - if something expires it just means that you put in a new access request and go again.
In my experience people are not penalised for this ie it doesnt necessarily result in being put on the end of a waitlist.
I think the important thing is to have very good documentary evidence of your medical conditions ( diagnosis, treatment history, prognosis, whether there is any expectation of improvement - preferably from a specialist rather than a GP) and detailed description of your functional capacity limits across the 6 criteria ( ie 'impairments')...along with equally detailed description of the consequent support needs It has to be worded very much in the language of disability - not medicine.
Do you have access to any local disability advocacy service to help with the process...they are funded to provide this assistance.

Re friends avoiding you..yes it seems a sad truth that the anxiety that some people feel in responding to illness in others is often strong enough for them to lapse into avoidance. I think that is them managing their stress in often a fairly unconcious way. But - I personally think it is pretty pathetic behaviour.

regards

Lindsay

I'm a long way away, but I certainly sympathise and feel for you. Can't offer any wise advice except to treat every day as a bonus and focus on the good stuff. Don't let the NDIS crap upset you, just take it one step at a time. You are fortunate to have Heather - some people are trying to deal with this on their own.

Originally Posted by Roverlord off road spares

I have many unfinished projects around the home

I disagree,

Originally Posted by Blknight.aus

Youve got my number, email, PM,DM and I think every other method of contact known to man, if you or heather need anything, any time, make sure you use one of them. I'm not too far round the corner.

Originally Posted by V8Ian

My thoughts are with you and Heather, Mario. With the exponential expansion of medical knowledge, who knows what the future holds.
Please let me know if I or the forum community can be of any ​assistance.

Originally Posted by Fattima

Sorry to hear this news Mario. Hopefully the meds can restore some quality of life for you.
I'm in Melbourne and if you need anything just give a yell.

Originally Posted by BathurstTom

Well when you are well enough, let Dave (blknight)and I know and I will make the trip down and WE WILL take you fishing. I have a 14' 6" aluminium runabout, but if you are in a wheel chair we may need something bigger. I have a NSW boating license, which I assume is ok for VIC? Anyway, let us know and we will make it happen.

Chin up mate, as Dave said, we're only a phone call away. We might not have the magic answer, but we can talk...


Tom.

(number deleted) if you want or need to speak

you have a bunch of willing friends who are waiting to give you a hand.

Originally Posted by Roverlord off road spares

people you thought were your friends seem to avoid you

and not fairweather friends either

The problem with Dr google is its always worst case scenario. Mario,the boss is away for a week come Monday so I'm free if you need something /someone or just go out for a drive. Give me a call.

Regards Pas.

Mario I understand how hard this must be, please do try and see your psych and look after your mental health.
Please let me know if you and Heather need anything.

Cheers
Bruce

HI guys wish us luck we sent all the NDIS paper work and reports on Mario , Via email. We did get an email back saying that they have it.
So it is a waiting game now. Hope it doesn't take to long. Heather

Good luck.