Leaners and lifts

Leaners

Yesterday, we had some training at work and the trainer was someone who I had never met before. I always aim to sit somewhere near the front so that when I need to escape to the toilet, I can get out of the room without disturbing anyone else. I did this yesterday in the training but the trainer positioned herself right next to me for most of the session. At first, this didn't bother me but then, as we went on, she started leaning on my wheelchair. The first time she did it, I wasn't expecting it and my arms did that drop-reflex thing that babies do when you pretend to drop them.

I can't describe the feeling of being leaned on without warning. It feels like I've suddenly lost my balance and that makes me feel rather nauseous. It also means that every movement the person makes, gets transferred through my body.

I've found that people lean less now that I don't generally have handles on my chair. It's more difficult to find a solid spot to lean on. When someone does though, they are really in close contact with me and it feels very invasive.

Lifts

I have two workplaces and one of them is on two floors and has a lift. Both buildings are fully accessible, for which I am very grateful! Yesterday though, somebody looked slightly surprised at my method of using the lift and I thought I'd share my lift tips.

Big lifts are easy - you can go in forwards, turn around and go out forwards. Small lifts can be a bit more tricky because there isn't space to turn around. I find it difficult coming out backwards because you can't negotiate obstacles, including people who are waiting. So I always reverse in so that I can come out forwards and just roll away.

I ring for the lift and while I'm waiting, I turn around and position myself so I can go straight backwards. When the lift arrives, I keep an eye over my shoulder in case there is somebody in the lift that I need to move for. If there is, it's much easier to move because I'm going forwards. When the doors open, and assuming it's clear, I reverse carefully back, being extra careful not to crack my knuckles on the sides of the door. When I get in, I put my brakes on and press the button. When I arrive at my floor, I just head straight forwards and off...

Are we just an afterthought?

I saw a BBC news article this week, with the headline:

Disabled people 'only an afterthought', Lords report says

Click on it to read and watch a short video clip. It highlights a number of accessibility issues that disabled people face. I was slightly surprised because I think there probably has never been an easier time or place to be a wheelchair user. 

Well, this got me thinking it might be time for an experiment. I've ordered a camera attachment for my wheelchair and I'm going to start recording some of my experiences - both good and bad - and share them. Please feel free to comment on your own experiences of positive and negative accessibility.

Camera attachment

Meanwhile, with what's left of today, I need to try to find somewhere in Goole where I could exercise a dog off lead in a fenced off area. I need to do this before I can complete my Canine Partners process and get on the waiting list.

Why PIP is not just about the money

When I got my PIP confirmation letter, on the back was a list of twenty other benefits that I might be eligible for. I'm not going to list all of them. Some are connected with unemployment and some just don't apply to me. There are some benefits of PIP though, that I think are quite handy.

1. Access to work - you can get this without PIP but PIP makes everything much simpler and quicker. I used this scheme many years ago when I had problems with my eye sight (now fixed). They paid for taxis to get me to work, magnification equipment and a few other things. This enabled me to keep working when I would have otherwise had to give up. In my current job, I didn't apply, but I wish I had now. With this disability, they could have provided some ergonomic stuff that would have made me more comfortable. However, my employer has been great and there have been no real problems connected with my health.
2. Motability - I don't get this because I'm only on the standard rate of the mobility component of PIP. If you get the higher rate, you can exchange the money for a mobility scooter or car. 
3. Road Tax - If you get the standard rate of mobility, like me, you get 50% off your car tax. If you get the higher rate, you're exempt from car tax.
4. Blue Badge - I have a blue badge. I had to go through an assessment to get it and I remember it being very stressful, not knowing whether I'd be eligible. At the time I had just got a job but there was no public parking anywhere near. A blue badge meant I could park right outside in a timed parking bay, without limit. Now, I can't imagine life without my blue badge and with PIP mobility, I don't have to be reassessed for my blue badge, it's automatic.
5. Council Tax reduction - We haven't applied for this yet. You have to have made certain adaptations to your house to qualify. We're nearly there. Once the stairlift goes in, in a few weeks, we can apply to pay the band below what we currently pay.
6. Disabled Person Railcard - I haven't got one because I don't use the trains but it's good to know that if I ever can't drive, I can get help with lower rail fares. 
7. Carers Allowance - For us, this is another 'not yet'. At the moment, Neil cares for me all the time we are at home but we're kind of getting by with it, so we haven't applied for help. In the future though, it's good to know that we can apply if we need it. 

I've also found there are sometimes toll exemptions on bridges or toll roads. For example the M6 toll road - you can apply for a pass if you get PIP mobility. The Humber Bridge is the same but for that you have to be on higher rate and have a motability car. 

If you buy things that are directly for your disability, you don't have to pay VAT. That shouldn't depend on PIP but it's often handy to have evidence. So if you buy a walking stick or a toilet frame, you don't pay the VAT. You have to fill in a form that says what your condition is. It's the same with buying a new car - if you have an adaptation made before purchase, you don't pay VAT on the whole car.

There are lots of days out, where you can get concessions on entry prices or a free carer ticket and some of them ask for PIP as evidence. 

I think this probably rounds up my ramblings about PIP. I hope it's been helpful. When I started, the government were talking about changing some of the criteria but that looks to have been scrapped now, thank goodness! 

PIP Mobility

Throughout last week, I looked at how the day-to-day living component of PIP is worked out. Today, I'm looking at the mobility component. This is much simpler and only has two parts to it.

1. Planning and following journeys
2. Moving around

First of all, here are the points...

MOBILITY ACTIVITIES

1. Planning and following journeys.
a. Can plan and follow the route of a journey unaided.  0 points.
b. Needs prompting to be able to undertake any journey to avoid overwhelming psychological distress to the claimant.  4 points.
c. Cannot plan the route of a journey.  8 points.
d. Cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid.  10 points.
e. Cannot undertake any journey because it would cause overwhelming psychological distress to the claimant.  10 points.
f. Cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid.  12 points.

2. Moving around.
a. Can stand and then move more than 200 metres, either aided or unaided.  0 points.
b. Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided.  4 points.
c. Can stand and then move unaided more than 20 metres but no more than 50 metres.  8 points.
d. Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres.  10 points.
e. Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided.  12 points.
f. Cannot, either aided or unaided, –
(i) stand; or
(ii) move more than 1 metre.  12 points.

I don't need any help with planning and following journeys. I was once very, very good at it. In my early twenties, I thought nothing of driving all over the place with just a paper map book in the car. Now I've probably become a little dependent on GPS and I struggle without it but being a modern techie-type isn't a disability.

I get my mobility points from the moving around category. When I filled in the form, I wasn't sure which box to tick. I ended up ticking the 50m to 200m box and supplying an explanation of what that kind of moving around involves. When I had my assessment though, I was put in the 20 - 50m with aids or appliances category, which gives me 10 points. 

PIP - moving around question

It is important to consider how quickly you can walk, how safely, how much pain it causes, whether you can do it repeatedly, etc. I can walk further than 50m but it's slow and painful. Actually, some days it's slow and painful walking less than 50m but I'm happy with the outcome for now. Although my CES (cauda equina syndrome) was treated and the nerve damage is stable, my knees are now showing signs of arthritis or something and it's often now my knees rather than my back that result in me walking less distance.

I think it also helped that I used my wheelchair for my assessment. Firstly, that meant I arrived looking and feeling human. I was able to process and answer all the questions, whereas when I'm in pain, I often forget to say things or get mixed up. Secondly, it showed that my wheelchair is a normal part of my life. It's not something we keep in the car for emergencies. A word of warning though, I would only do this if it genuinely is normal for you - it is easy to see whether someone is comfortable and confident using a wheelchair. Same goes for using a stick or crutches. If you use them most of the time, then use them for the assessment. 

So I get 10 points for mobility, which is enough to get me the standard rate. That is fine with me, though it irritates Neil when he knows people who can walk much further than me, who have the twelve points and a car. That doesn't worry me - I'm only responsible for my own honesty. I decided at the outset that I wouldn't lie or exaggerate my needs. When people do that, the government start tightening the rules and then the people who are most affected are those of us who really need the help.

Next time, I'll explain some of the links that can follow from PIP. It's not just about the money.

A beautiful spring day

I don't think I have ever been so grateful for a four day week! By yesterday, I was totally and utterly exhausted. I've ended up accidentally working some long days and it's amazing the impact that an extra couple of hours a day can make on my body.

Sometimes, to recover doesn't necessarily mean complete rest (though sometimes it does). Today, I just had a lie in - for me that means waking between half past seven and eight o' clock - and then got ready very slowly. It's a sunny day and has been dry for a good few days, so it was a good day to give my wheelchair a wash. I took a soft topped stool outside and a bucket of soapy water and it actually felt quite relaxing to sit there cleaning up my paintwork.

As it is such a nice day and the rest of the weekend is set to be rather unpredictable weather, I thought I should make the most of it and go for a walk in the park. I did manage a little walk, holding onto the back of my chair for support but my legs and back feel quite weak today so I had a ride and propelled a lot. I did two circuits of the park though and enjoyed the fresh air. I took some photos too...

I think our park is looking very beautiful today! It certainly lifts the spirit to get out and enjoy it, though for me, I wouldn't want it much warmer. I think it helped physically as well. The rest of the day will tell.

PIP - a few that don't affect me

Nil points

There are now several questions where I don't score any points, for which I am grateful! Whilst I want to get points for areas where I genuinely struggle, it is far better for me to have some things that don't cause me any problems at all.

Dressing and undressing.
a. Can dress and undress unaided.  0 points.
b. Needs to use an aid or appliance to be able to dress or undress.  2 points.
c. Needs either -
(i) prompting to be able to dress, undress or determine appropriate circumstances for remaining clothed; or
(ii) prompting or assistance to be able to select appropriate clothing.  2 points.
d. Needs assistance to be able to dress or undress their lower body.  2 points.
e. Needs assistance to be able to dress or undress their upper body.  4 points.
f. Cannot dress or undress at  all.  8 points.

7. Communicating verbally.
a. Can express and understand verbal information unaided.  0 points.
b. Needs to use an aid or appliance to be able to speak or hear.  2 points.
c. Needs communication support to be able to express or understand complex verbal information.  4 points.
d. Needs communication support to be able to express or understand basic verbal information.  8 points.
e. Cannot express or understand verbal information at all even with communication support.  12 points.

8. Reading and understanding signs, symbols and words.
a. Can read and understand basic and complex written information either unaided or using spectacles or contact lenses.  0 points.
b. Needs to use an aid or appliance, other than spectacles or contact lenses, to be able to read or understand either basic or complex written information.  2 points.
c. Needs prompting to be able to read or understand complex written information.  2 points.
d. Needs prompting to be able to read or understand basic written information.  4 points.
e. Cannot read or understand signs, symbols or words at all.  8 points.

9. Engaging with other people face to face.
a. Can engage with other people unaided.  0 points.
b. Needs prompting to be able to engage with other people.  2 points.
c. Needs social support to be able to engage with other people.  4 points.
d. Cannot engage with other people due to such engagement causing either –
(i) overwhelming
psychological distress to the claimant; or
(ii) the claimant to exhibit behaviour which would result in a substantial risk of harm to the claimant or another person. 8 points.

10. Making budgeting decisions.
a. Can manage complex  budgeting decisions unaided.  0 points.
b. Needs prompting or assistance to be able to make complex budgeting decisions.  2 points.
c. Needs prompting or assistance to be able to make simple budgeting decisions.  4 points.
d. Cannot make any budgeting decisions at all.  6 points.

The dressing and undressing one seemed to surprise my assessor. She asked me how I manage, so I showed her how I use my clothing to lift my leg to put socks and shoes on, etc. She probably knew where I was up to on points and wanted to find me another 2. I would have preferred to get two more though for toileting or for preparing food.

So, here endeth day-to-day living. I score 10 points altogether. Eight points qualifies me for standard rate of PIP. Twelve would have given me the higher rate. For me, I'm grateful that I get something and that it isn't means tested because getting PIP will enable us to adapt the house, buy further aids and get help in that will enable us both to continue working for longer. Long term, this benefit keeps us me in work and off benefits, so it makes sense to give me it.

PIP 5

Managing toilet needs

For me, this is my biggest issue in terms of day-to-day living. The nerves at the base of my spinal cord were crushed and there is now permanent damage. It's easy to see that I don't walk well but nobody sees what for me is the worst part. I am incontinent. I can't feel when I pee and I get unreliable messages telling me when and how urgently I need to pee. So I wear incontinence pads all the time. On top of that, I can't empty my bladder fully because the nerves don't communicate with the muscles properly, so I self-catheterise to make sure my bladder gets emptied regularly.

As well as the bladder issues, there is the fact that without help, I can't get on and off a normal toilet. Sitting down is easier - I can just drop. Getting up is sometimes impossible, unless I can find something to pull myself up on. I have to confess to having broken various toilet roll holders and door handles in restaurants and pubs that don't have an accessible loo.

So here's the PIP question:

Question 5 - PIP form

I was sure I would score highly for this category because my toileting needs seem huge to me.

My wardrobe - more full of catheters and Tena than clothes

My wardrobe resembles that of an elderly person. I used to be acutely embarrassed by my need for all this stuff but now I just want to rid the world of the stigma associated with incontinence.

A variety of catheters + hand sanitiser

Self-cathing was a huge deal for me. I really didn't want to go down this route and tried everything else first. Ultimately though, not being able to empty puts the kidneys at risk and means that I often went to the toilet several times per hour. Now, I'm used to doing it but there is still something deeply invasive about sticking a tube up your own pee-hole. In terms of cost, they are on prescription, so I pay a monthly fee to get a prepayment card.

Raised toilet and frame

I wish they made more attractive toilet frames. We've moved a long way with mobility aids but toilet aids still look like something for a care home.

Here are the points criteria for PIP:

5. Managing toilet needs or incontinence.
a. Can manage toilet needs or  incontinence unaided.  0 points.
b. Needs to use an aid or appliance to be able to manage toilet needs or incontinence.  2 points.
c. Needs supervision or prompting to be able to manage toilet needs.  2 points.
d. Needs assistance to be able to manage toilet needs.  4 points.
e. Needs assistance to be able to manage incontinence of either bladder or bowel.  6 points.
f. Needs assistance to be able to manage incontinence of both bladder and bowel.  8 points.

So in spite of having multiple toilet needs, I score 2. I've heard this morning that the planned changes to PIP have been scrapped but this was one of the areas where they were going to downgrade the 2-pointers to 1 point because, well, everybody has these kinds of things in their home now, don't they? I hope they were only referring to grab rails, when they said that!

PIP part 4

Washing and Bathing

The next question is about washing and bathing. This is a difficult one because it's not just when you're at home that this is an issue. We've adapted our bathroom so that home is manageable. Going away is really scary though.

I can't bath at all. I can't sit on any kind of hard surface. It hurts way too much, both at the time and afterwards. Showering is okay but I have to be quite quick as I can't stand for very long. Also, I need a selection of things to hold onto or I slip. I can't bend to pick things up, so I need shelving at standing height.

Question 4 - PIP form

I can't use a normal bath or shower. A walk-in shower or wet room with grab rails is best. At home, we have knocked the bathroom and toilet into one room and installed a walk-in shower. Even then, I can only really wash my top half and the bits where I can reach. We have a detachable shower head and I just give my legs a good swill.

Rain shower and removable head + grab rails

Walk-in shower - low level

Here are the points for this question:

Washing and bathing.
a. Can wash and bathe unaided.  0 points.
b. Needs to use an aid or appliance to be able to wash or bathe.  2 points.
c. Needs supervision or prompting to be able to wash or bathe.  2 points.
d. Needs assistance to be able to wash either their hair or body below the waist.  2 points.
e. Needs assistance to be able to get in or out of a bath or shower.  3 points.
f. Needs assistance to be able to wash their body between the shoulders and waist.  4 points.
g. Cannot wash and bathe at all and needs another person to wash their entire body.  8 points.

Even though this was a major piece of work for us, it only counts as an aid or appliance. Therefore I get 2 points in this category. Even if they had allowed for the worst case scenario, which is when we are away and don't have good facilities (even in advertised accessible rooms), needing help to get in and out would only be worth 3 points.

PIP 2 & 3

I'll tackle two today, as one of them doesn't really apply to me.

The second section in the day-to-day living part is about eating.

Eating question - PIP form

I have no problem at all remembering when to eat. I love eating! If, you can't eat independently though, here are the points you could get.

Taking nutrition.
a. Can take nutrition unaided.  0 points.
b. Needs –
(i) to use an aid or appliance to  be able to take nutrition; or
(ii) supervision to be able to take nutrition; or
(iii) assistance to be able to cut up food.  2 points.
c. Needs a therapeutic source to be able to take nutrition.  2 points.
d. Needs prompting to be able to take nutrition.  4 points.
e. Needs assistance to be able to manage a therapeutic source to take nutrition.  6 points.
f. Cannot convey food and drink to their mouth and needs another person to do so.  10 points.

The third section is about managing treatments. This is where I scored the highest points. It's about medication and physiotherapy.

Treatments question - PIP form

I take medication, though nowhere near as many as some people but I do a lot of physio. In the morning, when I am quite alert and have some energy, I manage my physio okay. In the evening though, I usually need reminding to do both and I often can't remember whether I've taken medication or not. I'm so physically and mentally exhausted by evening that I often just fall asleep if left to sit on the sofa for more than 5 minutes.

Managing therapy or monitoring a health condition. 
a. Either –
(i) does not receive medication or therapy or need to monitor a health condition; or 
(ii) can manage medication or therapy or monitor a health condition unaided.  0 points.
b. Needs either –
(i) to use an aid or appliance to  be able to manage medication; or 
(ii) supervision, prompting or assistance to be able to manage medication or monitor 
a health condition.  1 point.
c. Needs supervision, prompting or assistance to be able to manage therapy that takes no more than 3.5 hours a week.  2 points.
d. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 3.5 but no more than 7 hours a week.  4 points.
e. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 7 but no more than 14 hours a week.  6 points.
f. Needs supervision, prompting or assistance to be able to manage therapy that takes more than 14 hours a week.  8 points.

I get 4 points because Neil has to help me with physio and my physio takes between 3.5 and 7 hours per week. I think they have assessed this section correctly. In terms of incurring extra costs for living as a disabled person, it worked backwards for me. I used to be a teacher and absolutely loved it. When I returned to teaching, post-injury though, I just couldn't manage the demanding hours alongside my physio. It was too much! So although I enjoy my new job, I have lost a huge amount of my salary because I've had to stop teaching.

Physio stuff

The pic above is my collection of physio stuff. Most days, I don't use all of it. The mat and band are the most used items. I used the weights to start building some upper body and arm strength when I started using a wheelchair. Now, I tend not to need that as the regular propelling keeps my strength up. It's my back and legs that I have to really work on. My lower back easily gets stuck, as though the bottom two vertebrae have stuck together. This feels a bit odd and when they come unstuck again, I get a ping, like being twanged with elastic.

My left leg is particularly weak and alternates between vitually no sensation and painful sensations that don't even exist. I often start screaming in the evening, that I've got a pin in my leg/foot or that something is crawling on my leg. Then there's the cramps - don't get me started on that! It's like my leg goes into labour!

Physio does help with all these symptoms and it keeps me mobile so that I can work during the day. It is painful though, doing some exercises and stretches, so I tend to put it off. Fortunately, Neil seems to get his evening entertainment out of nagging me and eventually I do it - even if only to shut him up.

Personal Independence Payment (PIP)

PIP has been in the news all week. The government have decided that some of the adaptations we use to help us live independently are not adaptations at all and therefore, the points will be reduced. I'm not that worried myself because I don't think they'll get it through a vote. It does disappoint me though to have it reinforced that there are still people out there who don't realise that this could be them... tomorrow. An accident takes just a second and life changes forever!

Many people have asked me about PIP, so I thought I'd share a little bit each day about the different parts of the PIP assessment and how they affect me. It is quite a lengthy form and process but I'll break it down.

Firstly, PIP comes in two parts:

1. Day-to-day activities
2. Mobility

The first part of the day-to-day activities part, is about preparing food. 

Preparing food question - PIP form

Often people ask whether you can get PIP for certain conditions. The answer is always "No". You don't get PIP based on a particular condition. It's all about what you can and can't do. 

Both my conditions affect my ability to prepare food. Firstly, I can't stand for long enough to prepare a meal. One day, when we've finished all the adaptations to the house, I hope to be able to cook again from my wheelchair but for now, it is impossible. Also, my essential tremor makes the peeling, chopping, etc really difficult. Some days, I can do more than other days but I would never describe it as safe. 

Neil prepares all my food, apart from sometimes I go out to the local deli for lunch, when I'm at work. It is really hard when Neil goes away. That leaves me with nobody to cook meals. I used to try to get by but after several accidents and not being able to manage, now he prepares all the food for me, before going away. 

Neil chops veg for me in case I run out of meals

Freezer full of pre-cooked meals

Here are the PIP criteria for preparing food:

DAILY LIVING ACTIVITIES

1. Preparing food.
a. Can prepare and cook a simple meal unaided.  0 points.
b. Needs to use an aid or appliance to be able to either prepare or cook a simple meal.  2 points.
c. Cannot cook a simple meal using a conventional cooker but is able to do so using a microwave. points. 2 points
d. Needs prompting to be able to either prepare or cook a simple meal.  2 points.
e. Needs supervision or assistance to either prepare or cook a simple meal.  4 points.
f. Cannot prepare and cook food.  8 points.

So how many points do you think I should score for this? I score two because I need an aid or appliance to cook a meal. I have to confess to feeling a little offended for Neil that he gets referred to as an aid or appliance, but hey ho! The point is, I could prepare food if we had an adapted kitchen. An adapted kitchen counts as an aid or appliance. We haven't adapted the kitchen yet because it all costs money. Other adaptations took priority. Neil can cook for me but he can't shower on my behalf, so the bathroom was more urgent.

This is just the first of many sections of the PIP application. I'll share more next time.

Additional Needs

This weekend, I'm at a training event at a lovely hotel near Derby. It's run by Care for the Family. Just by way of background, Care for the Family was set up by a lovely Welshman called Rob Parsons. He used to be a lawyer and became increasingly saddened by the number of couples getting divorced. He felt that God was calling him to do something, so he started a charity that focused on strengthening family relationships. The idea was to preempt and prevent problems, rather than pick up the pieces.

Now, Care has many sections. I'm involved with befriending parents who have children with additional needs. This annual training event gets all of the befrienders together.

It's lovely to talk to other mums about autism--related stuff but it's also amazing to hear stories of real challenge and yet these parents still have something to give to other families who are finding it tough.

Highlights for me have been saying grace in sign language and sharing photos of our children and chatting about them. I haven't taken any photos as I don't want to invade people's privacy but I'll try and get some pics tomorrow of the accessibility and otherwise of the hotel.

Saturday morning stroll

We're gradually adapting the house to maximise my independence and minimise painful activities. In the last couple of weeks, we've had a decorator in to paint the stairs and landing and then an electrician to put in a box for the stair lift. This morning, we went to choose carpet for the stairs and landing. As it was a nice day, cool but sunny, I suggested leaving the car at home and having a walk into town. So we did... and here's me enjoying the ride back along the riverside path. It's flat, smooth and quite peaceful - perfect for a Saturday morning stroll.

It's probably obvious but here's my tip for occasions such as these: dress warmer than you think you need to. It was about 3^oC and if you are sitting still, like in a wheelchair, you soon get cold. I'm wearing a Thinsulate-lined hat and gloves and my trusty ski jacket. Even though I walked some of the way and self-propelled a lot, I was glad of the warm clothes.