Wheels

[Heste]

It sometimes feels like I am giving in to this condition but I am seriously thinking about getting myself some wheels. I got myself a scooter a while ago that lives in the boot of my car. Its great for when I visit supermarkets or go to places where there is a lot of walking to do. However, I have never felt comfortable about using a scooter to get into my office. It just doesn't seem like the right vehicle.

 

So I started to think about a powered wheelchair. My office is not very wheelchair friendly but it could be made to be. I would have to use the goods lift (there is a formal step-free route but its a big long winded).

 

To start the ball rolling I have been referred to my local Wheelchair service by my MS nurse. They are going to come and assess my needs. If nothing else they will give me advice and point me to the next step (I don't expect them to hand me a powered wheelchair). I might need an access to work grant but this is hopefully the sort of advice they will give me.

 

I have to do something as I only go to the office twice a week and work from home the rest of the time because of the fatigue I suffer from and yet i am still getting so worn out.

 

It seems like everything I do is too much effort. Walking to the office from the car park, walking around the office and going to meetings all make those 'in office' days so tiring. Then once tired through physical effort I then find myself mentally fatigued.

 

I have a similar issue at home. Getting washed and dressed, taking a bath, all seem to use up so much energy. I had an OT in a while ago who suggested a perching stool for the bathroom which has helped but now I am planning taking the bath out completely and getting a walk in shower.

 

Of all the symptoms of MS I have, Fatigue is the worst. I can deal with pain, loss of balance and weakness in my arms and legs but fatigue stops me doing things and even stops me thinking and remembering stuff (important stuff too).

 

Will wheels make much difference? I don't know. The scooter helps so I am guessing a powered wheelchair should. On the other hand it also can be a life changer. Is it better to fight on? or should we just accept it as a necessary evil? I don't know, I guess I am just too tired to think about it. I also don't know how much this is going to cost and so that might make the decision for me.

 

I will no doubt keep you informed on my progress,

 

Regards,

 

John

[Nick]

Hi John,

 

Interesting post. I know how you feel! I use a scooter and exact as you describe, while being very useful and versatile, scooters can't for fill all you needs. I also use a manual wheelchair for specific 'difficult tasks' BUT of course the problem here is strength to propel! I am OK for now but am always looking for opportunities and have my eyes set on one particular product. This is the 'E-Motion' wheels by Alber. ( http://www.alber.de/en/products/wheelchair-drive/mobility-wheelchair-emotion.html ) (

) I have had these demonstrated twice to me and they are the most amazing bits of kit! Very expensive but I suspect there are very few other types of chair that can still be put in the boot easily and be so compact and flexible. Using these is well worth a try, its simply magic the way they work! you have no conventional controls, you simply use them as you would a manual chair but with no effort. You also don't have the problem of going down slopes, the wheels brake them-selfs, keeping you in control. The only thing which is a problem is that this particular product should only be used on decent surfaces. these are not suitable for rough terrain.

I am also fearful about dependency. I can still walk and wish to maintain my fitness as much as possible. Its just so difficult at the times when I can't!!

 

Nick

Edited 7 Apr 2013, 2:21 pm by Nick

[Scully]

Hello John,

 

Ahh the 'wheels'. I posted a long while ago when my OT came and measured and assessed me for my wheels. She was a prescribing OT and simply sent the measurements for a manual wheelchair to our local wheelchair services, and about six weeks later the machine arrived.

 

Surprisingly there was no cost involved for me, like the perching stool it just arrived with a phone number should I no longer need it or have a problem with it.

 

My OT advised me that if I needed to upgrade to one with an engine, I just needed to call her to arrange.....I guess each health area is different.

 

I recall in one of my blogs that the dreaded wheels were stored in the back of a cupboard and I vowed it would never see the light of day, until I realised that if I wanted to go anywhere that involved any walking, I simply would opt out of going. Thus,, I was missing out on lots of trips out. It is more than useful for holidays and days out. Albeit restrictive in as much as I can't lift it in and out of the car on my own, and I can't free wheel myself far alone as my arms are a bit weaker than they used to be.

 

I didn't see it as giving in, rather a tool to use so I could enjoy being further afield....a half mile stroll along the prom at the beach was not accessible to me, but, with 'wheels' it was.

 

As you say, fatigue is a big problem. Somedays the stairs may as well be the North Face of the Eiger for me, as is walking any distance. I too, walk whenever I can, but there seems to be so much planning required as to how much or how far I can walk, and why else I may want to do on a given day.

 

Scully

x

Edited 7 Apr 2013, 2:20 pm by Scully

[Christina]

I have one too for occasional use, but not electric. It now resides in the back of my shed for when I really need it, but like you Scully I can't propel it more than a few yards as I get terrible MS hug, nor can I lift it in and out of Car boot! The one you mention Nick, looks fantastic. I've often thought, should I need to in the future, I'd look at an electric chair. I share your thoughts about how even the smallest task is so tiring John.

 

Chris x

[Bigbird]

Scully & Chris, you said everything that I experience.

It took 6 months to get my chair but I use it for going out if I know I have to walk any distance. It's a bit heavy to lift in and out of the car myself but I very rarely go out on my own if I'm going to have to 'walk' any distance anyway.

 

I think you can use the mobility part of DLA to buy an electric chair but then you'd have to sacrifice the car. I'd rather have the car

 

BB x

[Heste]

I have had two assessments. One was from OT who are going to send me a seat for my bath. it's electric and lowers me down into the bath and then lifts me back up again. This was in response to me saying that I find the effort in taking a bath is very fatiguing. My baths are never very hot (obvious reasons) and I have to check the temperature several times while the bath fills. This requires effort before my bath starts. Then the climbing in and out. It may not work as my bath is a corner shape and may be too wide. Once it arrives the OT will check it is safe.

This is a temporary solution. I big plan is to replace the bath with a walk in shower or wet room. The OT gave me a list of 'approved' contractors ('approved' simply means not previously complained about).

 

Then I had an assessment from the Wheelchair Service. She started by saying they would not be able to help as I was not planning to use it in the home but then she went on to assess my house. The doorway from the living room to my kitchen will need to be widened. The Fridge/Freezer will need to move but generally my house is quite accessible for a powered chair.

She said a stairlift would not be much good and that a domestic lift would be better. These are useful for long term planning but we left it at that for now. She recommended I contact Access to Work (AtW) for a powered chair to use in the office and out and about in London.

 

I spoke to AtW by telephone. They filled in a form as we spoke that they then sent to me to be signed and returned. I did that. I am now waiting for them to contact me.

 

The idea is that I would use the powered wheelchair to get from the car park to my desk in the office. But here is my next issue. Where will the wheelchair be kept. I heard about a man who's company bring the chair to him when he arrives and collect it at the end of the day. That is one idea. Another is to get a car that can fit the chair in the back (but this will not be a BMW). From an independence viewpoint I think having a wheelchair Accessible Vehicle (WAV) would be better as I am not dependent on someone bringing my chair to me. It also means I can use it in other places too.

 

It seems to me that the move to a powered wheelchair is quite a big step. It isn't something I can move towards gradually.

 

I am also going to talk to AtW about my commute. Currently I drive. I am not sure what can be done to help here. Driving requires effort and concentration. If I am fatigued I don't drive and simply work from home. Sometimes I abort my commute and return home. It is very flexible. If I use public transport (train and bus) then I lose that flexibility. If I use a taxi (a common solution but its a long commute) then its better but still not as flexible.

 

Anyway, I am keeping my mind open to whatever AtW have to suggest.

 

My expectations are not that high. It seems that they are expecting me to come up with the ideas but maybe my next discussion with them will be with someone more understanding of the issues.

 

I'll let you know how I get on.

 

Regards

 

John

[Nick]

Interesting post John,

 

Getting the equipment right for you is the crux of the matter. Clearly there is still a balance between using all the abilities you still have (mobility level) over the increase in your disability and what that means in loss of access. To a lesser degree I feel I am facing the same dilema. Conventional powered wheelchairs have the disadvantage of size and weight. Solutions to this such as the E Motion chair which gives it high portability and greater compactness only lose out if you are unable to remove them from a vehicle.(much the same level of difficult as taking a manual chair out) Much the same problem applies to me with my mobility scooter. A friend of mine who uses a conventional power chair and a people carrier has a powered chair hoist , but this really needs two people to use! WAV is a solution but you then lose the Beamer! One possible avenue is to go along to the next big mobility show. Naidax international is coming up very shortly http://www.naidex.co.uk/naidexnational/Default.aspx?refer=1

 

 

 

Nick

Edited 28 Apr 2013, 12:03 pm by Nick

[Heste]

Thanks Nick,

 

I have a Pride Go Go Elite mobility scooter which lives in my BMW (at the expense of not having room for anything else except on the back seat) and this comes to bits so easily I can assemble/disassemble it very quickly using only one hand (the other supporting me)

 

My left arm is so weak I don't think even a power assisted manual wheelchair would work for me.

 

The thing that bugs me most is that whatever solution I think of there is an element of loss of independence or flexibility. These are two things I value. The best option I can think of is the WAV so I am not dependent on someone bringing my wheelchair to me at the office car park and collecting it when I leave. These WAV all seem to be a small bus (compared to my BMW).

 

The other option is to keep walking but this makes me tired physically and mentally. My ability to think is something I value too (and what I do for a living).

 

I dont have very high expectations from the AtW people. I think they are going to expect me to come up with the solution and they just say whether I can have it. Maybe I will be pleasantly surprised.

 

Naidax international is coming up very shortly

Aside from being too far away for me, I would not be able to go anyway as I am having all my doors and windows replaced this week. I was told by the wheelchair service that there was a show in Peterborough in June but I don't think there is. I think it was only there last year. Hopefully there will be another show closer to me in the future.

 

Regards,

 

John

[Nick]

I've been to the Peterborough show and its very good. I find I am scared of losing my walking ability totally and now understand the need for balance between wisely using energy. Just as you suggest becoming fatigue affects both physical and mental aspects, Its quite some act to go the right way and I feel like you, that while getting advice is useful, it is not always appropriate.

Those Wheels I keep going on about (E'Motion) were demonstrated for me by the people at Farmbourgh (EPC) who were most knowledgeable, with the correct light weight manual chair and the power wheels (which detach the same as manual wheels) The separate parts are a lot lighter and easier than my mobility scooter ( Lite-Way 6) Only trouble is the expense!!!

 

Nick

[Heste]

I was advised to visit The Disabled Living Foundation (DLF) in Westbourne Grove to take a look at the range of Wheelchair Options. I could take a look at E'Motion if only to see if my weaker arm would be the problem I imagine it would be.

Funding the solution is always going to be a deciding factor. I don't know how much AtW will contribute. Having worked for my, quite large, company for 25 years I know they will have to contribute £1000 + 20%. I have already forewarned them that I have contacted AtW. Fortunately, my company is very good and this will not be a problem.

 

At the moment I am trying to gather as much information as possible so I can make informed choices.

 

Meanwhile, I am still waiting for AtW to contact me. I am going to guess that, being run through the JobCentre, no doubt cash strapped and public sector, it might take a while.

 

Regards,

 

John

[Heste]

I received a letter from AtW on Friday saying they had tried to contact meon my work number but my colleague had told them I was on leave for the week and that they would try to contact me again next week.

Well, my colleagues at work have NEVER answered my phone in the past. Why did they have to choose this call to break the habit of a lifetime. If they didn't answer then it goes to voicemail. Voicemail messages are emailed to me where I am notified and can hear them on my iPad. I am one of the most contactable people on the planet. Anyway, I called the lady at AtW who had written to me (and who also had my home number and mobile but didn't call it in case I was abroad and it would cost me money to receive the call). She wanted to go through my application. This is the application AtW wrote when I first called them, that they had sent to me to sign and return. Now we are going through it again. Achieving...?

 

She told me an assessor will call me to arrange a visit to my office. Hopefully this assessor will be more clued up. So far they still seem to be asking me what I need but I am rather hoping someone will tell me what is possible. She said the assessor uses a 'holistic' approach. This will be interesting because she also said they are only able to produce a solution for work. As I work from home most of the time and am a self-confessed workaholic the dividing line between home and work is very blurred.

 

I was able to reinforce to this lady that any solution must preserve two very important aspects, Independence and Flexibility. As she repeated these a couple of times during the conversation I am fairly sure she wrote this down. I would not be surprised if now I get anther letter with confirmation of any amendments she made to the application for me to sign and return. Don't you just love the public sector.

 

It is still possible that I use my mobility scooter in the office rather than a powered wheelchair. It might struggle with the ramp to the office goods lift and it is not going to cope with London streets as well but at least it would fit in a BMW X1.

 

So, back to waiting for the next step.

 

Regards,

 

John

[Nick]

Thanks for the update John,

 

Having at one point contacted a DWP 'Disability Adviser'(not specifically access to work) myself I must say my experience was not good! I didn't have the same problems of contact that you describe but in my case I never really got any sensible suggestions, or assistance. I will be interested to see how it goes for you.

[Heste]

I have an Access to Work assessment date. Friday 31st May. It would have been sooner but I am on leave next week and of course the assessment is at my office. The assessor looks a little young but I guess more and more people do these days. I will let you all know how it goes.

 

Regards,

 

John

[Nick]

Hi John,

 

That gives you a little time to think up lots of awkward questions then!!

 

Nick

[Heste]

The whole concept is an awkward question .

 

They call this assessment a 'holistic'. It will be interesting to see how holistic it is. I am only in the London office two days a week. My company, very good that they are, will not want to do anything too major for just two days of my presence. On the other hand they did put in DDA compliant showers on every floor that I have never used. There is one other person in my company who has had A2W to provide a taxi into work but I would be the first to use a wheelchair. My office is not very accessible. I would be using the goods lift to get in.

 

BTW the assessor is from the Royal British Legion.

 

Back at home,

My OT has supplied me with a bath lift which makes it a little easier climbing in and out of the bath. She has also referred me to social services.

 

So much going on but I can't help but think that like the end of the day they are all going say "ah, but there is no money to fund this".

 

Regards,

 

John

[Nick]

Well John regarding your last point, I would think that it being not far from the start of the financial year could help. I reluctantly accepted the offer of a visit by the local OT last year and was surprised by the willingness shown in providing me a second (much better ) stair handrail and more convinent grab handles. My experience of work related help from the govenment, five years ago when I needed it most however was simply that I got nowhere. I simply got scrapped!!

 

Anyway if you don't try you won't get, and even if you don't get, then at least you will be able to do your own assessment on the 'holistic approach'. Then write a report causing a 'paradigm shift' on the 'synergy' of A2W ....................For 2013/14 A2W has a budget of £138million so how come less people are getting the money?

 

Silliness over.......Good luck

 

Nick

[Heste]

I had my A2W assessment on Friday. It was quite good. The 'young' man was very positive and did come up with some ideas I had not thought were possible.

 

As it is some of them may still not be possible. He will be writing a report which he passes back to a woman based in a job centre where they deal with the budget side. He did say she might have a different view to what they are willing to provide.

 

Anyway, the assessment was as follows:

First we had a private meeting (HR and Business Services wanted to be in on it but this part of the assessment is private). we discussed how my condition was affecting me and what I thought I needed. Then he talked about the possible solutions.

The obvious one is a powered wheelchair. He showed me a couple of websites showing the sort of thing that would be offered (but he said the wheelchair experts would advise on the best options).

 

Then for the commute he suggested I could have a driver (as a support worker, not a chauffeur but the effect is much the same). This person could also fetch and return the powerchair if it remains in the office. The job centre lady might say the powerchair 'must' remain at the office. Otherwise, I could get a motability vehicle that carries the powerchair.

 

I have some issues with memory and workload planning. This is fatigue related. He suggested they could supply some software (and a person to assist me with strategies and setting up the software in the best way).

 

Then we went to my work desk at the office. He took measurements and a photo. He was actually quite happy with the setup I have. The only change he suggested was to drop the hight of my PC screens by an inch. My helpdesk people made this adjustment immediately. It did make a difference.

 

Then I called in our Business Services representative (people who look after the office infrastructure) and we walked slowly through the routes into the office from the car park. We settled on the goods lift as the best option for wheelchair access. The goods lift is huge, permanently manned and quite smart (not the smelly, battered goods lifts you might be imagining). The final door into my office will need a automatic opener but this is better for everyone.

 

Now I wait for the reporting side. I am still sure someone is going come back with the message 'there is no budget' but we will see.

 

So far my experience of Access to Work has been very positive.

 

Regards,

 

John

[Nick]

Very good to hear all this John,

 

Its nice to see some positive results. Reading through your post I was interested about the working height of your desk. These things are very important and it reminded me of seeing highly adjustable (unconventional ) work 'stations' up in Norway. These are designed so that the work can be done at any height and seeing normal able bodied people working from standing up positions to very low down situations and being able to simple adjust things was a revelation. I am also amazed at the support you are being offered! Brilliant! I'm just a bit sad that when i was forced to give up work there seemed to be little interest. Having said that of course my situation was rather unconventional and not at all office related.

 

Thanks for the post I'm sure it will be of great interest to lots of people

 

Nick

Edited 2 Jun 2013, 12:07 pm by Nick

[Heste]

I am very fortunate in that I think for a living. All I need is a computer and an internet connection. This means that I can work from almost anywhere but they like me to have face to face contact with my colleagues which is why they drag me into London twice a week. There is still a possibility that when they see the cost of getting me there they might just decide that virtual banter is just as good. (for those who follow "The Big Bang Theory", Sheldon's virtual presence robot would be a really cool solution for me but I don't think A2W would pay for it).

 

My biggest problem is fatigue. Commuting and walking causes me physical and mental fatigue and for someone who's value is in thinking, designing and problem solving being fatigued is a big deal. For many years my managers have just left me to my own devices. Now, as my condition gets worse, they are getting a little more anxious and have been setting my colleagues objectives to become more involved in my projects and be able to support the applications and solutions I have designed and built. Of course this is quite sensible.

 

Had I have stayed in Archaeology I would have been out on my ear by now. That or washing bones and pottery fragments with a toothbrush for the rest of my career. I got out of Archaeology...you know why?...there was no future in it (very old archeology joke).

 

It is going to take a few weeks now before the jobcentre paper pushers do their reporting and follow their procedures but I will let you know the results when they arrive.

 

Regards,

 

John

[Hezza]

There is still a possibility that when they see the cost of getting me there they might just decide that virtual banter is just as good. (for those who follow "The Big Bang Theory", Sheldon's virtual presence robot would be a really cool solution for me but I don't think A2W would pay for it).

 

 

The NHS have virtual presence robots. If anyone saw the BBC's documentary following a day in the NHS it showed a consultant doing wards rounds via one! Maybe they'll lend you one John

[Nick]

That's interesting,

 

Since giving up 'work' I have found myself extremely busy but now rely totally on the keyboard and mouse. (And I suppose a 'thinking' head) MS is so strange and like you I increasingly find the fatigue problem more and more frustrating. Of course the flexibility of working at your own pace via the internet has great potential and its really great that you are still able to keep going!

 

Nick

[Heste]

The Access to Work Advisor phoned me this morning. good news! It appears they are willing to fund a EuroFlex DX Compact Powered Wheelchair ( dx-compact'>have a look).

They are happy that I carry it in my car (i.e. take it away from the office). This means I am will not need someone to bring the wheelchair out to me and collect it when I leave. I will need a car that has room for it but I am due a new Motability Car. It will need a hoist to load the wheelchair.

 

They did suggest an EMove5 but I don't like the look of it. (have a look) It looks like a dentists chair and it would harder to fit into a car.

 

She said my company would be required to install an automatic opener on my office door (internal). this will not be a big deal. It is handy for everyone too as they carry hot drinks from the restaurant.

 

They will also provide 8 hours of assistance helping me with work organisation and planning. This is supposed to include some software but this was not included in the assessment report so she is going to go back to the assessor and check. It might be that the assistance with planning would use existing software such as MS office but I don't know. I just have some issues with remembering and planning my workload (particularly when I am fatigued). I remember trivial things but forget (or just don't get round to) important things. I will see how this goes. It might be that I just have far too many plates spinning.

 

The driver/support worker was not included. She said it could be considered at a later date but while I am capable of driving myself I should. I agree, it keeps my independence.

 

So in a few days I will get the report and then it gets discussed with my employer (who have to contribute to the cost of the wheelchair and any software. The door opener is the companies responsibility entirely).

 

I am going to the Motability "One Big Day" show at Bluewater (shopping mall in Kent) on the 9th of July where I can see various car dealers and WAV converters in one place where I can look at cars that can carry powered wheelchairs.

I will also need to discuss with A2W about using the wheelchair elsewhere. They are happy for me to keep it in the car when not in the office but if I want to use it at other times I think they would want me to contribute to the cost. I am likely to want to do this as my car is unlikely to have room for a wheelchair and my scooter.

 

So it's all coming together.

 

Regards,

 

John

[Nick]

Brilliant News John,

 

Seems they have done a pretty good job.

 

Nick

[Scully]

Pleased to hear that it's all been pretty much sorted out for you John.

 

It's good to hear that these organisations work well.

 

Scully

 

[Heste]

Making progress! Still no wheels but they are getting closer.

 

Yesterday I had a demo of the power chair at my office. Its great. It will take a bit of practice to steer it but by the end of the demo I was doing OK. I got to try it going from the car park to my desk and back.

The chair can turn turn in its own length (spin), it can raise me up high enough to talk to people standing (rather than having to talk to peoples belly buttons). It can 'tilt in space' (I am sure there is good use for this but I have yet it find it). So thats the chair sorted. All I need to get it is to have A2W and my company agree to pay for it. Both have agreed in principle but I get the quote today and they can need to agree who pays what. I will need to pay into it too as I would like to use it for social/domestic as well as at work. It will need to be in my car and dont want to have to carry a scooter and a chair.

 

Next is the car. So that I can arrive at work and have the chair available it needs to be carried in the car. Unfortunately it will not fit in my little 1 series, M-sport coupe, so I have been looking for a bigger car. I am still looking but so far the VW Sharan is at the top of the shortlist.

 

Whatever car I get needs to have room for the Chair in the back. This will need a hoist fitted. So its all happening...slowly but it's happening.

 

As well as the wheels I am also having 'Strategy Training/coaching'. This is something else provided by Access to Work. Its to help me with the cognitive issues arising from fatigue and the holes in my brain that seem to come from this condition. From a company perspective its just something to scare the living daylights out of my boss. My job is to play it right down. The last thing I need is for my boss to start taking action to provide contingency. Ever since I was diagnosed they have identified the risk. This 'Strategy training' is to help me with managing my workload and remembering things (scary isn't it?). I have been making up my own solutions such as keeping lists and reminders but I think it will help to have expert advice.

 

So its getting there,

 

I will let you know how I get on.

 

 

Regards,

 

John