It's been a while since I posted anything at all on here, but maybe it's time for an update.
Jenny's condition was diagnosed as Functional Neurological Disorder back around March, the specifics being Generalised Dystonia. We hoped that with medication it could be controlled, although it was made clear there is no cure at present. Little is known about it, and the medical profession have proven to have no understanding and little compassion or empathy with sufferers of this debilitating condition. Only one GP who has known Jenny all her life has shown any sort of care and tried to help, the rest of the GP practice have no interest, or so it seems.
The condition causes involuntary muscles spasms and contractions, leaving the sufferer unable to control limb movements, with the limbs also locking in painful unnatural positions. This is extremely fatiguing. The medication controls it to a degree, but leaves Jenny tired out as well. She is unable to walk any distance before bringing on an attack. Having tried different medications and even quack remedies and alternative medicines* we are now resigned to that fact that it is not going to get any better, and are adapting the home to make things workable.
So far I have rebuilt the front door step removing one large step and making it into two shallower ones that are more manageable. They are too large however and Jenny can't reach the grab handles that were installed each side of the door until she is on the second step, so that needs a rethink with narrower steps. The back door already has a ramp or sorts, from when she was a childminder, that was installed to allow prams in and out easier, but it now serves as a disability access.
Stairs are now a problem, and Jenny often has to decide whether she spends the day upstairs or downstairs if I am out at work. She manages the stairs on a good day, but is too slow to answer the door - although we have trained our regular postman to wait a bit now - he's a gem, a young lad only about 25 but a proper old fashioned postie, always a smile on his face and he stops for a chat with everyone. So anyhow, a means of getting up and downstairs was needed, particularly if there was a fire.
A straight stairlift is about £1500 upwards. Stairs like ours with a turn in need a wrap around stairlift, which run to around £4000. We also considered a wheelchair lift, as long term it may come to that, but that would involve major work. A lift could, just, fit in the corner of the house currently occupied by the downstairs toilet and go up into what is currently my study/home office. We would then have to look at fitting a toilet elsewhere, possibly under the stairs, although that would involve moving a major supporting wall and losing about a square meter of the kitchen. Or we could remove the stairs altogether and just have a lift, but would then need a fire escape externally. The lifts work off batteries, so in the event of a power cut they will still operate for a limited number of times. The lifts run to about £7000, although used ones are on Ebay for £500 upwards - but then I'd have to figure out fitting it and adjusting the height and drop myself. The building work would take the final bill to around £10000, so a stairlift it shall be. We had a drive down to a specialist disability equipment provider in Hull today, with Jenny able to have a practice run on their demo machine to make sure she is confident on operating it. It sounds silly, but it takes a bit of confidence building to get someone with a disability to use one of those things - the fear of falling off is however greater than the actual probability. There are many microsensors and safety switches that mean they will not trap fingers, run things over or allow operation without the seatbelt on. It took a fair few minutes for her to get in and out of the seat, with her legs refusing to co-operate, but once in operation was simple enough and reassured her she'd be fine using it. If you do have a relative that thinks they need a chair lift I'd recommend they try using one first before you spend money.
Next step was a measure and dry run at home using a dining chair to replicate the stairlift in it's various positions. This highlighted an issue with a radiator in the hall which will need to move to allow sufficient knee room. I will also need to fit another power socket in the correct position as the only outlets are all on the wrong walls, and of course trailing cables are a no no. The chairlift will park either at the top landing or in the hallway at the bottom, which are the charging docks for the batteries, and it folds up to allow people past, the good thing being it won't block the stairs at all. This also means that on a good day Jenny can still attempt the stairs if she wishes, only using the stairlift when she has to and not becoming entirely dependant on it.
Our next pressing need is the bathroom. When we moved into the house 21 years ago it had a simple bath. I installed a corner shower booth then, but later moved the door and removed the shower when we remodelled to a P shaped bath with a shower over. Initially I thought about restoring it back to allow a shower booth again, but Jenny is struggling to step into a traditional raised shower booth. A wet room then seems to be the way forward, but I'm reluctant to lose the bath - I like a good soak and often need one after my racing and mechanic exploits. Fortunately we extended the house and added an extra 3 bedrooms some time ago. One of those backs onto the existing bathroom, with water and heating able to be tapped across. So the plan is to partition that bedroom which is a long L shape to make a roughly 7 x 7 foot wet room with a single bedroom at the other end. To make that work a door and small section of wall will have to move, with a new door repositioned, and there'll be a bit of wiring reconfiguration to sort out switching for lighting, and access to what was the kids playroom will now be through that bedroom. The kids are all grown up now, so the playroom will effectively become an upstairs sitting room and craftroom where Jenny can indulge in her passion of quilting.
The wetroom will have a toilet, a shower and a sink, and the bedroom might even get a small kitchenette so it will be a sort of self contained granny flat. I've yet to get an estimate for the conversion, but it won't be cheap. It will however allow us to stay in the home we love, it's a great house with great neighbours who have been very supportive, and would be more cost effective than moving to a smaller and less family friendly bungalow.
*Reiki massage manages to relax and relieve the symptoms short term helping her relax, but it's not a cure.
Thursday, 19 December 2019
Tuesday, 23 April 2019
Finding the fun in FND part two.
We are now starting to adapt to the situation having come to terms with things. Little things like unscrewing new jars for the first time so that Jenny can manage them afterwards. We already have an ECO kettle that boils just one cupful of water at a time from a reservoir tank, so I just need to get used to topping it up when I pass it as she can't lift it once it's full.
Having trained the kids to close the doors to retain heat all winter I'm now having to tell them to leave them open, even wedging them to make access easier.
We will wait to see how things progress before I start the mechanical building alterations to the house, and take advice from the assessor as to what is best. I had considered a ramp for the front door access, but apparently a set of small steps with a handrail might be better.
So, today it's been paperwork and making applications for things. At present with Jenny unable to walk the length of a bus (that's a stationary bus, on the pavement alongside it - a standard bus at that, not a stretchy bendy bus) it is obvious to me that we would benefit from the blue badge/disabled parking scheme. However to qualify for this you have to be in receipt of PIP (Personal Independence Payment) This is not means tested, you either qualify or you don't and you get either the lower payment of about £100 a month or the higher payment of about £400 a month. Whilst the extra money will be nice we don't really need it - although I've paid into the tax system all my life since leaving school I still feel uncomfortable claiming benefits. But without claiming for them we can't access the blue badge scheme which we do need at present. It's a strange affair, but that's the way it is. All we want is to be able to park somewhere close by where we need to be for the medical appointments she will have on a regular basis in the months to come.
Having never applied for benefits it comes as a shock to know how easy it is. They want details of bank accounts, dates of birth, maiden names and stuff, then your doctors and consultants details - but at no point did they ask about mobility. Likewise with the blue badge scheme - at no point did anyone ask what my car was (obviously a Range Rover isn't compulsory for parking in a disabled bay, whereas I always thought it was) Nor did they ask how overweight I was, what brand of tracksuit I wore, how many sovereign rings I had on each hand or the name of my Rottweiler. Experience shows me that is one stereotypical disabled badge holder. The other type wears a Trilby, and drives a beige Mini Metro and has a small yappy dog called Brian.
Anyhow, it appears the blue badge will cost £10, and may take up to three weeks if granted, whilst the PIP may take longer.
I will point out right away that I have the same feelings about blue badge holders that my dad had. He had one in the latter years of his life due to being almost lame in his left leg, however he wouldn't park in the disabled bays unless he was having a bad day. He would point to the sign and say, "They are for people in wheelchairs." He would then park the other side of the car park in the empty bays furthest form the door s and limp across with his stick. If Jenny is having a good day, when she is physically unimpeded that is what we shall do. If she's having a bad day and needs the frame then we'll use the disabled bays Or I'll drop her off in one then move the car to a normal bay to leave it free for the next disabled driver/passenger arriving. That's the way it should work.
Having trained the kids to close the doors to retain heat all winter I'm now having to tell them to leave them open, even wedging them to make access easier.
We will wait to see how things progress before I start the mechanical building alterations to the house, and take advice from the assessor as to what is best. I had considered a ramp for the front door access, but apparently a set of small steps with a handrail might be better.
So, today it's been paperwork and making applications for things. At present with Jenny unable to walk the length of a bus (that's a stationary bus, on the pavement alongside it - a standard bus at that, not a stretchy bendy bus) it is obvious to me that we would benefit from the blue badge/disabled parking scheme. However to qualify for this you have to be in receipt of PIP (Personal Independence Payment) This is not means tested, you either qualify or you don't and you get either the lower payment of about £100 a month or the higher payment of about £400 a month. Whilst the extra money will be nice we don't really need it - although I've paid into the tax system all my life since leaving school I still feel uncomfortable claiming benefits. But without claiming for them we can't access the blue badge scheme which we do need at present. It's a strange affair, but that's the way it is. All we want is to be able to park somewhere close by where we need to be for the medical appointments she will have on a regular basis in the months to come.
Having never applied for benefits it comes as a shock to know how easy it is. They want details of bank accounts, dates of birth, maiden names and stuff, then your doctors and consultants details - but at no point did they ask about mobility. Likewise with the blue badge scheme - at no point did anyone ask what my car was (obviously a Range Rover isn't compulsory for parking in a disabled bay, whereas I always thought it was) Nor did they ask how overweight I was, what brand of tracksuit I wore, how many sovereign rings I had on each hand or the name of my Rottweiler. Experience shows me that is one stereotypical disabled badge holder. The other type wears a Trilby, and drives a beige Mini Metro and has a small yappy dog called Brian.
Anyhow, it appears the blue badge will cost £10, and may take up to three weeks if granted, whilst the PIP may take longer.
I will point out right away that I have the same feelings about blue badge holders that my dad had. He had one in the latter years of his life due to being almost lame in his left leg, however he wouldn't park in the disabled bays unless he was having a bad day. He would point to the sign and say, "They are for people in wheelchairs." He would then park the other side of the car park in the empty bays furthest form the door s and limp across with his stick. If Jenny is having a good day, when she is physically unimpeded that is what we shall do. If she's having a bad day and needs the frame then we'll use the disabled bays Or I'll drop her off in one then move the car to a normal bay to leave it free for the next disabled driver/passenger arriving. That's the way it should work.
Saturday, 20 April 2019
Finding the fun in FND
My wife, Jennifer, has suffered from chronic back pain for years, ever since the birth of our first born. It comes and goes and it's something we've both had to live with.
However just three days after her 45th birthday she was suffering more than ever and stood up to go to the bathroom. On her way back she was suddenly struck down with muscular paralysis - total refusal of the legs to obey what her mind wanted them to do. She could stand, but not walk and was stranded in the hallway. Aided by my son we managed to walk, drag and carry her to the car and get her to A & E where after almost nine hours she was assessed and admitted to the hospital. During this time her legs were in constant muscular spasm, shaking and rising uncontrollably, Naturally we were both worried. What the hell was happening? She was in acute pain and her legs wouldn't go back down, even with me trying my best to help get them into an comfortable position,
The following day when I attended the ward to visit Jenny, not only were her legs in uncontrollable spasms but her arms had joined in too, in a slow motion dance fever. Over the next nine days she had cat scans, MRI, X rays, lumbar punctures to test spinal fluids, blood tests, urine tests - they checked everything, but physically all seemed fine. There was no brain damage, no spinal damage, not even the trapped nerve we suspected with the acute hip and back pain, So what the hell was going on?
The hospital seemed as clueless as we were - some unsympathetic nurses suspected she was putting it on, or imagining it. As if! The last place she wanted to be was in the hospital. If you've ever had to spend even one night in hospital with the heating to hot, the air conditioning too dry and the noise that other patients seem able to create then you know where we are coming from here. When you are ill the hospital is the last place you want to be!
After 9 nights Jenny was discharged with "some sort of psychological issue" and the promise of some psychotherapy appointments to follow. Not exactly the reassurance you need when it looks like you're having a stroke and a fit at the same time.
She was discharged with a Zimmer frame to walk with, and over the next three weeks or so she progressed from walking with this, to walking with a stick, to walking unaided again. Things we looking good. Whatever had affected her, maybe it was just a temporary blip. She was tired, and sleeping a lot and very tired but getting though the day. We put the fatigue down to the medication she had been prescribed.
Then one Sunday she woke late and had skipped breakfast and was feeling tired and her legs had started trembling a little. She sat down to make a sandwich, and I was watching as she tried to butter the bread - her hand was rebelling and she was fighting it, the butter knife swaying back and forth but not quite reaching the bread. Something wasn't quite right for sure...… and moments later she called my name asking for help, but her voice had dropped in tone and was slurred. Her face had dropped on one side, her speech thick and slurry, and her arms and legs had begun those dance gestures again. Our daughter Emma was home from University for the Easter break and she and Thomas our teenage son helped me get Jenny into the front room and onto the couch. A call to 111 NHS lead them to call out a paramedic as I described the symptoms and history. I had expected maybe a home visit form the on call doctor. Instead I got two ambulances and four paramedics!
A trip to A & E followed although this time we were expressed through Majors instead of going through Triage on the Minor injuries side of the hospital, and Jenny was quickly admitted to the Acute Assessment Unit.
Over the following days she was reassessed and suffered further episodes of these weird muscular spasms. They looked like a cross between a stroke and a slow epileptic fit, with chronic muscular fatigue and general tiredness thereafter. Speech was affected, although Jenny was fully aware of the events during and afterwards. By pure chance the Consultant Neurologist was doing his rounds and was examining Jenny, then her normal self, when one of these strange episodes began. From his observations he was finally able to diagnose the problem - Functional Neurological Disorder (FND), specifically Functional Dystonia.
In explaining this he likens the brain to a computer, which is what it is essentially. In this case, Jenny's Hard Drive has become either full or corrupted, and the ROM is full with the RAM trying to take over all tasks, but without sufficient processor power, hence the scrambled signals being sent out to the limbs.
So, now we have a diagnoses, what is the prognosis? Well not good news. The condition is untreatable via medication or surgery and may last indefinitely. Or it may cure itself tomorrow, or next week or in ten years. Who knows? Retraining the brain to operate the ROM and RAM differently and defrag the hard drive to let the processor work more efficiently is the answer, but how do we do that?
For now Jenny is left with muscular pain and weakness and bouts of seizures and muscular spasms lasting anything from 15 minutes to 15 hours, with speech also affected. When she comes out of this she is her normal self, although tired. During these bouts I feel helpless to do anything to aid her, except giving reassurance and holding her hand - that seems to help, just that human physical contact and stopping her hands rising up of their own accord seems to have a calming influence. FND temporarily takes away the beautiful young woman I fell in love with, leaving the twisted and frenetic body of a stranger, but Jenny is still there beneath it all and rises above it at the end of each episode.
So returning to the title of this episode of my blog, Finding the fun in FND. Well we are maintaining our sense of humour to help us through these difficult times. A few years back Pete Postlethwaite and Thora Hird starred in a film called "Lost For Words" in which Thora suffered a stroke and some mental health issues which her son, Pete had to come to terms with. Thora's character had picked out a care home called Springfield where she wanted to spend her last days, but after her stroke, with her speech and cognitive functioning affected she couldn't tell Pete the name of the place she wanted to go, the word always came out as Spongo. It's a sign of Jenny's sense of humour then that even as she struggles with her speech she refers to her episodes as her "Spongo" moments.
I have decided to write this blog in the hope that it may help anyone else struggling with the early stages of FND to diagnose and understand their condition as it is little understood by the medical profession and difficult to diagnose.
More to follow soon.
However just three days after her 45th birthday she was suffering more than ever and stood up to go to the bathroom. On her way back she was suddenly struck down with muscular paralysis - total refusal of the legs to obey what her mind wanted them to do. She could stand, but not walk and was stranded in the hallway. Aided by my son we managed to walk, drag and carry her to the car and get her to A & E where after almost nine hours she was assessed and admitted to the hospital. During this time her legs were in constant muscular spasm, shaking and rising uncontrollably, Naturally we were both worried. What the hell was happening? She was in acute pain and her legs wouldn't go back down, even with me trying my best to help get them into an comfortable position,
The following day when I attended the ward to visit Jenny, not only were her legs in uncontrollable spasms but her arms had joined in too, in a slow motion dance fever. Over the next nine days she had cat scans, MRI, X rays, lumbar punctures to test spinal fluids, blood tests, urine tests - they checked everything, but physically all seemed fine. There was no brain damage, no spinal damage, not even the trapped nerve we suspected with the acute hip and back pain, So what the hell was going on?
The hospital seemed as clueless as we were - some unsympathetic nurses suspected she was putting it on, or imagining it. As if! The last place she wanted to be was in the hospital. If you've ever had to spend even one night in hospital with the heating to hot, the air conditioning too dry and the noise that other patients seem able to create then you know where we are coming from here. When you are ill the hospital is the last place you want to be!
After 9 nights Jenny was discharged with "some sort of psychological issue" and the promise of some psychotherapy appointments to follow. Not exactly the reassurance you need when it looks like you're having a stroke and a fit at the same time.
She was discharged with a Zimmer frame to walk with, and over the next three weeks or so she progressed from walking with this, to walking with a stick, to walking unaided again. Things we looking good. Whatever had affected her, maybe it was just a temporary blip. She was tired, and sleeping a lot and very tired but getting though the day. We put the fatigue down to the medication she had been prescribed.
Then one Sunday she woke late and had skipped breakfast and was feeling tired and her legs had started trembling a little. She sat down to make a sandwich, and I was watching as she tried to butter the bread - her hand was rebelling and she was fighting it, the butter knife swaying back and forth but not quite reaching the bread. Something wasn't quite right for sure...… and moments later she called my name asking for help, but her voice had dropped in tone and was slurred. Her face had dropped on one side, her speech thick and slurry, and her arms and legs had begun those dance gestures again. Our daughter Emma was home from University for the Easter break and she and Thomas our teenage son helped me get Jenny into the front room and onto the couch. A call to 111 NHS lead them to call out a paramedic as I described the symptoms and history. I had expected maybe a home visit form the on call doctor. Instead I got two ambulances and four paramedics!
A trip to A & E followed although this time we were expressed through Majors instead of going through Triage on the Minor injuries side of the hospital, and Jenny was quickly admitted to the Acute Assessment Unit.
Over the following days she was reassessed and suffered further episodes of these weird muscular spasms. They looked like a cross between a stroke and a slow epileptic fit, with chronic muscular fatigue and general tiredness thereafter. Speech was affected, although Jenny was fully aware of the events during and afterwards. By pure chance the Consultant Neurologist was doing his rounds and was examining Jenny, then her normal self, when one of these strange episodes began. From his observations he was finally able to diagnose the problem - Functional Neurological Disorder (FND), specifically Functional Dystonia.
In explaining this he likens the brain to a computer, which is what it is essentially. In this case, Jenny's Hard Drive has become either full or corrupted, and the ROM is full with the RAM trying to take over all tasks, but without sufficient processor power, hence the scrambled signals being sent out to the limbs.
So, now we have a diagnoses, what is the prognosis? Well not good news. The condition is untreatable via medication or surgery and may last indefinitely. Or it may cure itself tomorrow, or next week or in ten years. Who knows? Retraining the brain to operate the ROM and RAM differently and defrag the hard drive to let the processor work more efficiently is the answer, but how do we do that?
For now Jenny is left with muscular pain and weakness and bouts of seizures and muscular spasms lasting anything from 15 minutes to 15 hours, with speech also affected. When she comes out of this she is her normal self, although tired. During these bouts I feel helpless to do anything to aid her, except giving reassurance and holding her hand - that seems to help, just that human physical contact and stopping her hands rising up of their own accord seems to have a calming influence. FND temporarily takes away the beautiful young woman I fell in love with, leaving the twisted and frenetic body of a stranger, but Jenny is still there beneath it all and rises above it at the end of each episode.
So returning to the title of this episode of my blog, Finding the fun in FND. Well we are maintaining our sense of humour to help us through these difficult times. A few years back Pete Postlethwaite and Thora Hird starred in a film called "Lost For Words" in which Thora suffered a stroke and some mental health issues which her son, Pete had to come to terms with. Thora's character had picked out a care home called Springfield where she wanted to spend her last days, but after her stroke, with her speech and cognitive functioning affected she couldn't tell Pete the name of the place she wanted to go, the word always came out as Spongo. It's a sign of Jenny's sense of humour then that even as she struggles with her speech she refers to her episodes as her "Spongo" moments.
I have decided to write this blog in the hope that it may help anyone else struggling with the early stages of FND to diagnose and understand their condition as it is little understood by the medical profession and difficult to diagnose.
More to follow soon.
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