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PIP and kyphoscoliosis

Painter55Painter55 Member Posts: 12 Listener
I have had DLA mob for many many years.  Low care.  This was a great help when working as i had transport to get me to and from work. Retired at 54 on ill health.  Never got around to applying for better care rate as afraid to rock the boat!  I am trying to get myself prepared for when i get the invite to apply for PIP.   I originally had a spondylolothesis, fused at 14 yrs then scoliosis due to Marfans, quite severe curvature, well over 100 degrees which was fused at age 16.  I have other probs, amputated toes and pinned big toes but over the past 10 yrs i have developed quite severe kyphoscoliosis.  I find it extremely difficult and painful to try and stand straight.  Also osteoarthritis.  I have noticed lately that my balance is not so good, i think this is due to the sideways curve and my being bent forward, seems as if they are fighting one another!!  Plan to see my GP to see if there is any physio available to help try strengthen neck and back muscles.  Anyone one else on here with kyphoscoliosi and going through the DLA/PIP changeover??  Obviously my walking is affected by my stature and spinal pain and unsteadiness. Rising from sitting to standing is quite a difficult time for me and those first few steps, same getting out of bed in the morning!!  Any advice would be grateful.  Thanks.


  • Painter55Painter55 Member Posts: 12 Listener
    Forgot to say my breathing is affected also, become quite breathless on walking. I guess this is due to my lungs being squashed and also my abdomen, cannot eat big meals.  Need to stand and stretch when eating a main meal!!! 
  • topshoestopshoes Member Posts: 442 Pioneering
    edited October 2018
    Hi @Painter55 and welcome , yes I am going from DLA to pip , got to see them next Fri not going to worry about it,  do you know when your going yet to see them .. 
  • janekim96Pjanekim96P Member Posts: 44 Courageous
    Hi @Painter55 welcome to our group I would say the same thing don't worry too much go see your GP the physio is an excellent idea I've had lot's of it even tried accupuncture your GP shoud if referred you already but I'm in a similar situation filled in my PIP review form have been on the highest rate no mobility never applied for it my daughter is my carer still waiting to hear back since the end of August I suffer from anxiety and depression and I'm losing my mind worrying can't sleep or eat I feel sick waiting for the postman but really I'm making myself ill so I'm taking everyone's advice and trying my best not to worry if I get a f2f then I'll deal with it then not worth making ourselves sick with worry good luck and get your GP to refer you for phsio I found it helped with my chronic back pain 24/7 unfortunately you only get so many sessions but give it a try best wishes to you 😊I also struggle getting out if bed and walking take care 
  • wilkowilko Member Posts: 2,401 Disability Gamechanger
    Just remember PIP is your abilities to meet, fit the descriptors of PIPnot your disability. As you will remember when you filled in your application form each question asked how you did different thing and how you coped and managed. It’s on these issues you will,be awarded points and the same for mobility, there are CVT cameras watching outside and inside the acessment centres, also the acessor knows how far it is from the nearest bus sop, car park and rail station plus distance from the waiting room to their acessment room. So be warned many have lost the mobility component because they where seen being able to walk into and around the center easyly and unaided before their acessment.
  • topshoestopshoes Member Posts: 442 Pioneering
    yes @janekim96P try not to worry dont do any one any good ,wait untill you hear i think best bet ,  
  • topshoestopshoes Member Posts: 442 Pioneering
     Hi @wilkoi i done loads of crossing out told the lady who came to see me its a mass that was on every page lol the lady took one look at it and said this is a mass i lol but she said they will see you have tried to fill it in at the best you can ,,thank you for that going on my own, i did wonder if they would be watching people in and out side , there is a long walk to where they are from bus stop .
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