Why do we care so much about diagnosis once we rule out the things we can do something about (tumor, stroke, heart/arteries etc.)?

[zjillian]

I have wondered why I spent so much time arguing with the doctors about diagnosis. Now 8 years later with no treatment that actually helps how did I benefit from a good diagnosis. I have been somewhat hostile about the money spent for fruitless research with its focus on diagnosis when nothing is ever done to assist the countless care-givers who suffer caring for their aging spouse, partner, parent, or relative financially, logistically, emotionally. The terrible problems faced heroically by caregivers is real and un-addressed. Of course the pharmaceutical companies have no money to make on us.

[Heady]

Here! Here! About us carers, I feel bottom of the pile regarding getting help or understanding from everyone and any one!!! Of course the powers at be, don't care, think of the billions we are saving by looking after our loved ones! Why would they look into the carers world, would you if you weren't involved? Just think of the "cvbnnm" they turn up!!! Far too scary.

I do think we need diagnoses, it does help others understand a bit, well, those who care and I'm sure it helps us look after our loved ones, as we can understand the symptoms and except them for what they are, rather than wondering what is going on. Even with diagnoses, it's hard to know when something can be helped or not!

Keep smiling!

Lots of love

Heady

[Kolton in reply to Heady]

So rite

[jimandsharynp]

Jillian, very true. Caregivers are as much the heroes of PSP as the patients who are also heroes. I think that the caregivers do the "heavy lifting" (not literally) of PSP. The patients endure and do their very best and in many ways are helpful both in the spirit they display and their endurance. We who travel the PSP path, caregiver or patient, are all heroes. I personally don't see either getting much support even from "Big Pharma". Jimbo

[Kolton in reply to jimandsharynp]

I so agree This is kolton its a horrible disease to contend with doctors want to give it any name But psp My husbands has been going on About 8 yrs MABEY more

[Kolton in reply to jimandsharynp]

I so agree This is kolton its a horrible disease to contend with doctors want to give it any name But psp My husbands has been going on About 8 yrs MABEY more

[SharonAB]

Dear Z,

I like your question - because I felt so alone when I asked repeatedly to discontinue testing, I still think "Yamatji yanma" every time I recall another appointment or script being written.

Regards, Alana - Western Australia

[Kolton in reply to SharonAB]

Isn't that the truth !!!!!!

[Kolton in reply to SharonAB]

Isn't that the truth !!!!!!

[zjillian]

Alana,

I really appreciated your reply. Last time online when I asked this question of the Alzheimer's online group they just about killed me...online that is. They were outraged as if I personally was standing in the way of modern science's march towards curing every disease, and maybe even curing death. I think my need to spend way too much time and expense on getting "the correct diagnosis" was all about my helplessness and anxiety.As if once we NAMED it we controled it or at least something. My husband was DIAGNOSED 7 years ago ( the diagnosis was changed a few times but that made no difference except psychologically for me. As if PSP was somehow less horrible than Alzheimer's). When I look back at the doctors, tests, medicines, travel, waiting waiting waiting for results for late doctors, and 1000s on useless medicines with expensive side effects I think it was a total waste. I think that if I had saved that money I would have enough money to pay for the help I really need. I knew the diagnosis (or possibilities Parkinson's, Alzheimer's, PSP or a blend of the above) but wanted to find some grown up out there to help me not feel so all alone but really all it did was to delay my acceptance (sort of) that my husband was dying, was suffering and there was nothing I could do about it.

Jill-Costa Rica

[Hidden]

I thought about your post for quite a while. With a 34 y scientific background in pathology, the concept of early diagnosis and appropriate treatement are fixed in my brain. So when my wife;s illness didnt conform to parkinsons, I went about fighting the medical establishement and after about 3 months did get the PSP diagnosis. We are about 2-3 y down the line from first symptom. The only adavantage of having a PSP label so far is we think we know what we are fighting, our community team have upped their game and we go to the hospice one a day a week which wouldnt have happened without the PSP label. I might be wrong though, it may be that the neurologist wrote "rapid progression" in his letter which stimulated the responses rather than the PSP label. I do find myself very challenged though, weve had some very difficult moments as members of this group will recognise, mobility issues, falls, infections, diarrhea vomiting all over the place loss of cognition etc etc. So after a few more years of this, if we survive, I might well come round to your view that the diagnosis was of more help to the medical establishment and not the patient or carer. In the end it ll comes down towhether we got a good day today or not. I type this before my wife wakes up and the next day with PSP starts, Best wishes and keep going.

As for the pharma companies, some of which I worked against as a regulator, there is no money in PSP, the only advances will come by luck probably from Alzheimers research.

[zjillian in reply to Hidden]

Yes, I did the same thing with my husband. I had to fight to get a diagnosis. I read and read and read and fought with doctors and insisted on a diagnosis. I think when we finally got the PSP diagnosis I felt relieved for some reason. It made more sense than Parkinson's or Alzheimer's and we could rest with that. In Costa Rica doctors do not like to tell you a "bad" diagnosis, so that makes it doubly hard. So there is something in us that needs a diagnosis. It is like we need to know the name of our enemy. It feels more under control.

We had already spent thousands in useless Alzheimer's medication and seizure medication. This is our 8th year. My husband is 72. His father died of PSP when he was 73.

Jill

[Kolton]

Yu need to no what yur dealing with That's what I found !!!! Rite ????

[zjillian]

We all need what we need. The diagnosis is the easy part.

Jill