Primary Orthostatic Tremor

Primary Orthostatic tremor is a very rare progressive brain disorder often misdiagnosed as Parkinson’s. The tremor is usually five times the frequency of Parkinson’s and it is very difficult to observe, the tremor needs to be confirmed electrically via an EMG test to confirm its severity. The tremor makes it almost impossible for the patient to stand even for a few seconds.

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Benefit form filling

I have had the lovely pleasure this week of filling in the dreaded benefit forms known here as the Disability Living Allowance forms, 39 pages of soul destroying questions designed I think to bring on depression to anyone that fills them in. Forms like these can really get you very depressed, you are constantly thinking of all the bad ways your condition affects you, mulling over the best way to put it into words to fit the form. I have heard many stories of people reduced to depression tablets simply because they have spent days filling these forms.

So what can be done to alleviate the problem? I think getting someone else to fill in the form for you as you relate your problems is the best way. Also get your family to help you fill the forms or let them know that you’re going through this task as the more support you get the better. Emotional Support is very important; consider letting people close to you know that you are making a claim, and that you would appreciate their support.

Next, write everything down you put on the form or photocopy everything you are sending, these agencies often lose forms. I found that having a written record from last time you filled in the form really helps to keep the depression down for next time you fill the forms. The trouble with benefit forms is they put a lot of emphasis on whether you can walk and they do not comprehend that there are people that have problems standing, but may still be able to walk a bit. I find this difference displayed most when I visit the supermarket on my mobility scooter, people with walking problems get off their scooters when they get there and walk around the store, I am the other way around, I get there by car and then get on the scooter to go around the store. It always amuses me to look at the mobility scooters parked up in the entrance to the store.

Finally get an independent guide from a source other than the agency you got the form from, it might mean a small charge, but they are worth it. Many people filling in forms miss the point of the forms, they think that they are just describing their condition and forget that the point is to show what help you need. What are your experiences of benefit form filling?

10 comments to Benefit form filling

  • avatar Chris Cardus

    I have just started to fill my form in. I was advised by my neurologist to give him a list of things I cannot do and he said he would keep it on file for information if asked. I am also confused with questions about walking as I can walk reasonably well apart from problems when my motorbike fell on me in the garage last year and hurt my left leg quite badly. The form does not fit with POT at all.

  • avatar Chris Cardus

    Speaking of motorbikes, I have had to give them up, my picture on the blog shows me about 5 years ago when the POT was not as bad. If you notice even then I was using the 2 bikes to hold me up for the photo. Funny how I have been finding ways to hide the condition from people all these years.

    Has anybody got any advice re leg, knee and hip pain? It hurts all day and also wakes me up in the night.

    I am going to Harry Potter world with my family next month, they provide wheelchairs, I will let you know how I get on.

  • avatar Dave

    Hi Chris, I am lucky that I should not have to fill in the new PIP forms until 2015, I would not like to be a guinea pig for the new untested systems. There are so many types of disabilities out there and they assume that walking problems has the greatest importance, I really don’t know why. Dave

  • avatar Chris Cardus

    Hi Dave, you refer to new forms, does that mean that the Form DLA1A I have is out of date?

    Chris

  • avatar Dave

    Hi Chris, no, they are planning to bring in something called Personal Independence Payments to replace DLA. I have seen the new questions on the new PIP form, gone are the questions on how do you get on outdoors, in is a vague question on how well can you plan and follow a journey? most people filling in DLA before October should not see the PIP forms until 2015 and only those only under 65. Dave

  • avatar Chris Cardus

    Thank goodness for that!Thanks for the info,

    Cheers

    Chris

  • avatar chrissie

    I work as a volunteer for Age Concern Hampshire and one of our services is help with form filling. I think charities in other areas would do the same. I see people come in looking very stressed and confused, then they go out smiling! There is no charge either.

  • avatar podhorodeckisz

    If I see a form I run a mile. Figuratively speaking of course as running is a no no for me, but neither is writing so in all I’m goosed.

    As we all know OT is a relatively new known condition and definitely not everything is known about it yet. I encounter numerous challenges throughout a typical day but no one is able to identify whether these challenges are due to OT or due to some other entity of my overall condition. The majority of us if spied on can appear quite able bodied at times however in most cases this is only because WE plan accordingly and ensure that WE remain in control. In simple terms this comes down to using just the right amount of muscle power before tremors overtake and in most cases we are only able to plan like this because of the assistance some of us get. Trying to cope with life on an everyday basis by finding ways to do the best we can in a miserable situation is not going to do us any favours.

    As a test I took myself to my local DIY store today. I specifically chose to walk. The dreaded form will ask me something like “could you” and based on my test earlier I could only say “yes”. It wouldn’t ask me things like “could you do it again” or “do your legs hurt” or “are you dizzy” or “do you feel as if you’re going to faint” or “was the path level with no potholes and no ice”. I don’t know who designed forms but I think they’re awful inventions and unless you dig deep and look for the things you can’t do and in essence make out you’re a cripple then you’re goosed too. Good luck.

  • avatar Lynne

    Hi everyone
    I am a volunteer at my local Citizen Advice Bureau and we also help people fill in these forms without charge. We do ask people to make an appointment though because of then length of time to complete the form. I am due training on the new PIP in May and will post any tips I pick up. It is definitely worth getting help as I found it more difficult filling the form in for myself than for other people. We have heard that they are trying to get rid of low rate care element altogether. I have already seen people coming in who claim Employment Support Allowance and they appear to be tightening up on the criteria for this as well. Dave, I also will have a new assessment for PIP in 2015 as I miss the cut off date of being over 65 by 6 months. We believe that there will be face to face interviews and no one will automatically be transferred from DLA to PIP. With regard to pain I have had some success with back pain from an Acupuncturist, not sure how this works but has given me quite a lot of relief from pain in my right hip, at first I went every week but now go once a month. Before this I tried the Chiropractor but this probably made me feel worse and did nothing at all for the pain.

  • avatar Dave

    Hi Lynne,
    My mother had a stroke about 14 years ago and it was the Citizen Advice Bureau that helped my parents fill out the forms. As it is my father would admit that he struggles just to fill the Christmas cards out, let along near 40 pages of questions. I have seen the draft questions for the PIP forms, but it maybe a few more weeks before the actual form finds its way onto the internet. I have heard that people are not happy with the loss of the “How do you cope outdoors” question, and the PIP people obvious believe that not having a social life does not matter anymore. Dave

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