Thanks Bredhu, I envisaged some flak from my post so thanks for understanding what I meant.
Variability, tell me about it; I completely understand.There aren't many good points in a day now, sleeping within an hour of getting up, sleeping most of the day,so as the condition has progressed we have had to seek more help resulting in carers coming in, two days and 5 evenings a week.
I don't want this but needs must now.
I've been reading this thread with interest. There appears to be a slight misunderstanding about PIP. It does not matter one jot what your diagnosis is. It counts for absolutely nothing in their assessment. All they are interested in is the effects on your daily life. This is to assess your degree of disablement for benefit purposes. The claim forms are a classic example of how to do this, though you may not think so. Nobody thinks so, that's how good they are. It doesn't matter which disease support forum you go on, there's always a thread complaining they don't ask the right questions on the forms. Yes they do.
How ATOS interpret that info is a different matter.
In exactly 14 days I will celebrate my 69th birthday and still I am awaiting a result that is fair,accurate, and at least has a sensibility about. I am due to attend a tribunal,date yet to be sorted, and it means that the process is encountered to its 14th month. The errors that have been made in my assessments are worrying in their inaccuracies. Right side confused with left.Answers to questions recorded without thought. Do you have a social life was one question that I replied that some days people do come to see me. The fact that since New Years Eve we have only been out in the dark twice.So the conclusion ....he has an active social life. Pity the assessor did not know me before PD arrived. I do try to retain a positivity to life but of the 11 yrs since diagnosis this last year has been a really difficult one to deal with.
This time scale is unbelievable as every query,question seems to take weeks and weeks to deal with and as I understand PIP as a benefit finishes at 64 years of age.and here am I with my 70th year not so far away. The other interesting element is that having contacted my MP some 3 times ,albeit by e mail, I have yet to have the courtesy of even an acknowledgement,yet alone a reply or any offer of support.
At this moment in time I am on the brink of telling a number of newspapers exactly what is happening to people with Parkinson's with the result that the life we are struggling to get on with in a positive fashion is just being effectively wrecked. I do not think about the future in great detail as it really does not fill me with too much hope .Normally I am a positive person but as another week rolls away and still nothing in terms of progress I am going to really sort myself out when I wake up in the morning and get back to living each day one at a time.
have contacted pduk for advice
Well after 15 months with a appearance at a Tribunal the job is done and an award has been sorted. It will be less than I was entitled under the DLA but at is at a level that I am willing to accept. It was never about money ,it was about acceptenance of the issues relating to PIP and it's relationship with people with Parkinson's
If you are in the middle of the same issue as this ,keep going and don't give up.
I’m sorry to hear about the challenges you’re facing with your medical history request and the overall situation with your Parkinson’s disease. It can indeed be frustrating when administrative processes delay essential aspects of healthcare. It’s important to advocate for yourself in these situations, perhaps by checking in with your GP to understand the status of your request and expressing the urgency of your situation.
Dealing with a chronic condition like Parkinson’s can be emotionally and physically taxing. The stress from such situations may impact your well-being, so finding healthy ways to cope is crucial. If you haven’t already, consider discussing your concerns and frustrations with your healthcare team or seeking support from friends, family, or even support groups for individuals with Parkinson’s.
Your cynicism regarding certain political aspects is shared by many, and it’s understandable to feel frustrated about disparities in pension arrangements. Focusing on self-care and finding positive outlets for stress relief may help you navigate these challenging times.
Remember that your health is a priority, and don’t hesitate to communicate openly with your healthcare providers about your concerns. I wish you strength and resilience as you continue to manage your condition.
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