‘Small Vessel Disease’ 4 me; meanwhile Masonic Chess games with my health needs, stall, distract, and misdirect

‘Small Vessel Disease’ 4 me; meanwhile Masonic Chess games with my health needs, stall, distract, and misdirect


Blog update housing in green, health in blue red for attachments

This blog covers both Health appointments and also correspondence regarding my obtaining accessible housing
it dated from 31 July – presently, October 2016.

In my view I show the obstructions I had to overcome along this path and efforts made to prevent me obtaining what I need.

Following on from my last blog post 2 August 2016
                                           Update on arm, with MRI results interpretedadd url


wrote to my MP 31 July 2016
he responded informing me that he had sent a letter to CEO Borough. Letter dated 4 August 2016.

I was advised to ask him have his research assistant write to my Neurologist to get confirmation that I have significant mobility difficulties and that they are significant enough to justify/warrant accessible housing.
So I sent another letter to him asking for this, and added that I still hadn't heard anything from the CEO. 24 August 2016.

I received a letter from my GP surgery (dated 18 August, attachment 1)

, to make an appointment for a ’NHS health check’, as soon as possible. I called and was given one for

                                         

Friday 9 September .......see below.

I went away to the sea for respite and also to avoid being accessible during ‘Feast of the Beast’.
I returned on Thursday 8 September but found bruising on my forearm, like finger prints. Attachment for instagram

https://www.instagram.com/p/BKIdg-2hvPg/?taken-by=higherinsight


I had meanwhile received a letter from Housing dated the previous, acknowledging my letter to MP and they asked that I re apply and return reference number and any other documents that may help their assessment.

I reapplied and sent the Worker my reference number and said I would try to get the documents to her by the next day but it involved quite a bit of work.




Friday 9 September

carried out by HDA Nurse
I attended the 'NHS health check’, I found myself very hungry on route, so drove to the surgery and went to eat nearby. I had a meal still hungry I bought some cake, and then made my way to the GP surgery, but still craving more food; which is not typical for me, but I therefore bought some crisps and Chocolate to eat in the waiting room.

Then I was called in. straight away she pricked my finger for blood and tested and said it's too high in cholesterol. So I said but I have just eaten loads, so that maybe is why. She replied ‘No. that don't make no difference, I’m going to have to send you for a full blood test.’

She then asked to weigh me, and check my height and to my recall I believed it the same weight I was when I was weighed for the bone scan, in January but she said, I had put on 10 K, which shocked me.
She took my blood pressure and said it was fine. Wrote down in attached booklet she filled out and BMI chart.

She checked her chart and said I was in the very dangerous area of obesity and she was worried. She then asked what activity I was doing and I said I was sent on the 'walking away from diabetes' workshop where I realized I need to have a smaller waist and so tried to walk loads and swim, but then fell and broke my wrist again and so had to stop but now was back to swimming and walking. She said I needed to do more, but I said I am doing as much as I can, but my muscles tire and take long to recover.

She said then I need to reduce my fat intake, I agreed but explained that often I had restaurant dinners or take always, as I find I'm too tired to cook sometimes and also that my cooker was a 2 ringed small cooker, placed on top of a work surface so hard to do when weak and tired.

She wrote out an appointment card for me to attend the blood department  down the corridor  for a full blood test, on the following Wednesday, at 8.40am 14 September; which was the day before my due Neurologist appointment  and said I needed to do a 12 hour fast prior.

She filled in some parts of a booklet.  

                                                                Blood pressure 127/79
                                                                Body mass Index 34.2
                                                                but omitted the cholesterol results
                                                                Risk of Cardiovascular disease score 7.18


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I was unable to finish the preparation for the  Housing manager , so didn’t send.                                                                                                       
At the end of the day (Friday 9 September) I received an email from the housing manager saying she had received my registration number details, and awaited the documents.


Sunday 11 September
I sent the Housing manager the documents along with a brief outline of the history of my case shown below
 as she didn't acknowledge the OT assesments and show any awareness of my Neurological difficulties.

******************************************************************

What I sent her


my previous GP requested an OT assessment, back in 2014. After my collapsing at home and was immobile for days.

The Occupational therapist assessed my home for suitability in January 2015.
 She recognised my home was inappropriate for my needs. She advised me to apply to local Housing to be placed on their list.

 My Neurologist at the time had requested a MRI brain/spine scan which was carried out around this date also. Thus the Housing service was aware of my awaiting diagnosis when I applied.

1 April 15 I received a response to my housing application stating I do not meet the threshold, suggesting applying for private .or appeal.
I was advised to appeal.

Then in March 2015 was awarded PIP for my disabilities.

30 March 2015 I saw the Neurologist and he gave me response to Brain scan.

He said it could be MS, but if so then there isn't that much as is usually seen. It could also be some other illness I don't recall what he called it, but said it would be due to too much cholesterol or high blood pressure.

End of May 2015 broke my right wrist falling at curb.

10 June 2015 broke left wrist, fell walking along pavement. So both wrists broken.

 I received a letter from Housing services regarding my appeal saying sorry for your delay dated 8 June 2015 and that you hoped to complete by 3 August 2015.

Dated 20 July letter from Occupational Therapist assistant stating she had made a number of attempts to encourage the ‘Housing solutions ‘team to accept me on their list. But was told needed diagnosis

Please see attached OT letter.

 I can now add to that at my last Neurology appointment, I asked the newly allocated Neurologist about the matter regarding my need for housing; She said ask you to write and she would explain. She requested another brain/spine scan, which I had April 2016.

I aware of the fact that I wasn't even allowed on your register, so didn't feel I would gain cooperation from Housing services re this, so chose instead to request my GP sent her an appropriate letter to which the Neurologist could respond, then forward it to your services.  I did not achieve success this way as no letter was written, by the locum GP I was appointed. I returned at a later date to ask my GP the response she said apply to your services again and explain, but I believed from previous efforts you would still be requesting a diagnosis, which I may never get. Therefore I took advice and was told to write to my MP, and ask for help with the matter. Which as you know I have done.

I am due to see the Neurologist this coming Thursday.15 September where she may or may not be able to give a diagnosis with the new MRI brain/spine scans results.

I was referred to both Neurologist and Eye specialist in 2014 and have seen them for 6 monthly update assessments since. 

Regarding my eyes I have double vision due to some neurological issue with my eyes movement.

My disabilities include difficulty with walking, and weakness/instability in my lower spine which at worst results in me becoming unable to sit or stand/walk. I use walking poles when weakness episodes occur and due to this and sometimes severe fatigue I am limited on how much I can physically do each day due. I also have poor balance which results in me tripping and falling easy. Upon falling I break easily, although my bone density appears normal.

I still see a consultant 6 monthly for my double vision plus an Orthoptist every 6 weeks to measure the eye muscle movements, strength and the extent of my double vision.

I am currently overweight, which does not help. and although I do my upmost to stay mobile and active I am not going in the correct direction.

BMI is too high. So I was sent on a workshop early this year, as cholesterol was slightly over normal and recognised my need to be more active, but after a few weeks into pushing myself more I fell and broke my right wrist again. Making any activity hard.

Last Friday 9 September 2016  I attended a health check requested by my GP surgery and here I was told I need to go for further blood tests as my cholesterol was too high (higher than a few months prior) and that I need to change my diet. Which again is an issue as often I am not physically able to stand and cook, plus my cooker is a 2 plate portable cooker placed on top of a worktop so higher than normal cookers and therefore I can have difficulties lifting saucepans etc.

I am now considered to be in an even higher danger zone, with a higher score for cholesterol and also further weight gain making me morbidly obese.

My blood test will be done next Wednesday, 14 September. I am currently receiving medication for hypothyroidism which contributes to my tiredness no doubt.

I will inform my Neurologist of the blood test etc but I don't know if she would be able to access the result whilst I am at her appointment the following day,15 September.                           

My next due appointment with the Orthoptist clinic is 4 October, a 6 weekly check on my eye muscle strength etc.                

Then 12 December I have my appointment with my Eye consultant Mr A.

Please find attached the last written report from previous Eye specialist.

I recently asked my MP that his research assistant write to my Neurologist, to have them confirm I have significant mobility difficulties and that they are significant enough to justify/warrant accessible housing, I therefore now ask that you could do this, in order to gain the relevant information.

Thank you for your help in this matter.

Yours Sincerely

Louise Clarke

***************************************************************************


I then saw that at the top of my blood form The HDA nurse had filled out that it said the blood test had been requested by my Neurologist, and therefore I logically recognised that this was most likely the reason I was requested to have the 'NHS health check'.

But I also recalled that at my GP surgery there is a blood testing section that is open every day from 7.30 - 4-30, Monday to Friday and does not work by appointment system but via a ticket issuing machine. Surely the nurse who worked there knew that, plus how was it that she could make an appointment when there is no system to book me into.

I also would like to state that it is odd that when I saw her on the Friday, it would have be logical to book me in for the Monday as I needed to do 12 hour fast.

I therefore arrived 7.30am on the Wednesday  14 September and asked the nurse how long would the blood tests take. She answered 2 to 3 days. I said but my Neurologist had requested them and I was seeing her the next day. She said well she should have requested them earlier. So I told her she had asked for weeks ago.
She therefore decided to write urgent on the blood samples. She asked where was I attending my appointment and I told her which hospital and she said that it was another trust and therefore the Neurologist would not be able to check my results. She therefore gave me the phone number for the DR to call and ask for results.

******************************************************

Praise the Lord, he is mighty to save.

***************************************************

15 September 2016
The next day I attended my Neuro  appointment,

I was weight again and BP taken by nurse

Then I went in to see the consultant, they had changed again, the one now being the original consultant I started seeing back in 2014.Dr D, the Male specialist.

I explained on arrival that his colleague had requested my blood tests weeks ago and that the GP had asked me to come in for a 'health check'.

Which I went to last Friday 9 September. But I didn't know it would involve a blood test and was very hungry, so ate a meal, then cake, but still was hungry so ate crisps and chocolate in the waiting room. Then the nurse took the blood test for cholesterol, she said it was 7 I think, and was too high so I would have to have a full blood test. She made an appointment for yesterday but then I saw on the blood test sheet that the Neurologist had requested the blood test, so I told the nurse taking my blood how I was coming today, so she wrote urgent on it. She said you won’t be able to get the results on your system as they are a different trust so gave me the number for you to call them.
I stuttered loads trying to say all this.

He called them and said the results were normal. I asked even the cholesterol, he said yes. So I said 'so it was the food last week that made it high? He said yes.

I said how my eyes were improved, but in the last week blurry like I have cream in my eyes.
I said I was swimming to try to be active and lose weight but wasn't strong, nor getting stronger.
My walking was not good today and that for the past week or so I have had poor balance. Plus light headedness and dizziness.

Also I have had thick head and hard to concentrate and much feelings of like electricity going through  me, which keeps me awake, well did yesterday, before I went to blood tests.


He said my blood pressure was a bit high.
I said it never is high, the nurse tested it last week and it was fine.
He showed me the results taken just prior to seeing him by the nurse.
I don’t usually have blood pressure tests done at the neuro appointments. But did along with my weight taken.

My blood pressure was something like 144, over something.
But last Friday it was fine. I said, and normally is so. He said well maybe you were tired from the stairs.
I told him that I got the lift but that it was a very hot day.

I was sweating it was dripping from my face,

(at beginning ) he said you broke your arm again I see,
I said yes I slipped and it was displaced, they didn't know if they would need to pin it, but it was ok and is fine now.

I told him it is my legs that are weak.

He said all is the blood is in normal range, that does occur sometimes for my age or words to that effect.
I said but I have the brain scaring, he said yes it was 'small vessel disease',

I asked what he said, as he has an accent, and wrote it down.
He said my vessels were too small and getting smaller.
I said yes it wasn't always bad. He said yes the cholesterol is causing it; it's hard for nerves to pass signals, or something to that effect.

He said there is no drug he can give me, but if my BP is high my GP can give me a little pill for.

He said its circulation or something, and I said yes, my knees swell but I don’t know why, circulation is involved,

he asked had I had tests on my heart. I said yes about 5 years ago, it was fine.
He said there is a test for circulation (he named but I can't recall name but he agreed to send me for the test and will see me again in 6 months, (since this appointment I have received an appointment for to see Neurologist again 3 months time).

I explained about the housing issue, and that I now asked the MP to get assistant to write to his college neurologist and also now Housing have written , so I asked they do the same, as that was what his college had suggested to do.

I offered him the letter I had emailed to Housing plus my notes that I brought with me.
He said yes please. I handed and left.


**************************************************
When I arrived home I received a call from my GP surgery, the receptionist said my GP wanted me to make an appointment to see her, but it was not urgent. The earliest appointment was for
7 October 2016 which fell after my next appointment with Ortoptist, who tests my eye movement etc.


***********************************************************

Friday 16 September I received an email from the Housing manager asking for any info I can add since the day before was my Neuro appointment.

So I emailed back that I was told the brain scaring I have was due to 'Small vessel disease'.

Wednesday 21 September I received the letter for next Neuro appointment it was dated the previous Thursday, the day of my Neuro appointment. It was a new appointment made for December 2016. So 3 months instead of the usual 6 months.

Friday 23 September I received email acknowledging my email I sent last Friday to the Housing manager.




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Eye appointment 4 October 2016



they had cancelled everyone -but Dr said if people turned up he would see them, .maybe.

So nurse took me to him.

He said you have prism lenses and string, with beads,

yes
how’s that doing?
Well ok,,, but my eyes are getting blurry when tired

he said   stop using the string (of beads),,, 
he tested my eye movement and said it was quite bad.
He asked how my eyes have been; I said they get blurry sometimes when I’m tired. and also the prism lens don’t always help - but still helps better than without,
he said he could put a stronger lens on but it would make things more blurry,,,,,,,
so I would prefer to keep what I have and rest my eyes more.

he saw it as a thyroid problem, and asked how my thyroid was doing , I said it was showing in blood tests to be in normal range and I don’t really know what signs tell me when it is going silly, buy my body does vibrate sometimes , not sure if that's a thyroid thing. neurological or what,,,,,,,,,
he asked about my jolting and ,,,I said yes I see neurologist and also sometimes stutter,,,,,,,

it is said now by eye Drs that my eye problem is not thyroid caused, but neurological...but , he continued to relate to that it was thyroid problem.

and said you had a problem as a child ( I told him how I had a stigma ,maybe genetic,, where left eye doesn’t work independently, but follows right) and then there's signs before , I said yes but I cured it,,,,,,,,,,,so was discharged , but he said no you may of got rid of signs ,but it may still of had little bit of thyroid eye disease, or since you have an another 'episode', can’t really recall his word choice, and that it was that has caused the problem to come again.

I next have an appointment for December, so come back then.


praise the Lord yet again,,,for when I returned home there was a voicemail from a nurse saying don’t come in today as no staff

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I received text that day Tues 4 October,,, from GP reminding appointment on Friday 7 Oct

plus computer hard drive got a virus
and computer portals are not registering when I attach memory sticks.

6 October received another text to remind me of Dr Appointment, on 7^th Oct

also then I phoned the PA for the Neuro consultant to see if he had sent report yet, she said yes it was sent on 20 September to GP surgery.

55555555555555555555555555555555555555555555555555555555555555555555555555555555


went to Dr's appointment, Friday morning 7 October 2016

she asked how I was.
I said tired and that I had seen eye specialist who said my eye problem was thyroid eye disease, which was what they said for past 2 years and then they changed opinion recently to neurological and then this recent one said no it’s thyroid.
 Also told her I went to Neuro, who phoned blood test place and they said blood was ok.

The Dr said my blood tests showed high for cholesterol.
My glucose was slightly better. But worried because cholesterol is a bit on the high side.
I told her how I had eaten loads prior to the blood test the nurse did at 'health check'.

and how when I attended the Neuro appointment on the 14 September, the tests from the previous day the neurologist called for and he said they were normal, but that my blood pressure was high, 144 over something.
 But I pointed out to him it was normally fine, like when the nurse of the health check did it a week prior it was 128 over something.

I asked the Dr had his report arrived.

as I checked and it had been sent, she said there was nothing on the computer, yet, but there was a letter from him written on the 15 September, saying would send me for tests on my neck, so I pointed out that my neck was fine, unless it was for the circulation test, it was.

She said she needed to weight me, for the diabetic - she said it was the ‘walking away from diabetic’ - I recognised that it was what she was referring to; the day workshop I went on and was weight previously by nurse who did 'health check' and prior to seeing Neuro, at hospital ...and to my pleasure I had since lost 3 kilos.

I told the Dr how I had started a new diet after the neurologist said I had small vessel disease and I looked it up and saw it can lead on to dementia and Parkinson’s, which I don’t want so changed my diet to fruit.

She said my thyroid is fine, it was my cholesterol that concerned her, she wrote out a sheet to test my inflammation levels, as she said when I asked about, that they hadn’t tested for that.

So I told her how in the past when I was first told I had thyroid problems diagnosed it was 1000 for inflammation yet, I was told it should be around 5.

She looked through my file and said there was no record of this there. I said it was back in 2014 so at other GP surgery. She printed out a sheet for a blood test regarding inflammation, which I went for after the appointment.
You can find info on this matter in a blog post from that date

       

9th Sept 7.6 = cholesterol
should be less than 5

14 Sept 6.9 quite, still high after fasting still high

23 December 15 (last year) 6.4
Triglycerides was high as well-
 cholesterol is made up of more bad cholesterol

liver functioning slightly off, but it has been worse before

Said the letter sent to a DR T, saying was arranging test for Carotid

Artery. I asked who is Dr T.
She said my doctor here.
.I said ‘Oh, I thought you were my named dr.’
She replied ‘Oh, I really don’t know.... (laugh),,, ; she gets all your letters’.

She said with the cholesterol she would like to test again in say 3 months

Monday 10 October

A woman from Housing called F, and left her number to call her
so the following morning I did and was told she was in a meeting, and then he looked in my files and said she had closed my case, as I hadn’t got back to her. He suggested  I wrote to the Housing manager dealing with my case; in another department; to which I responded I would but still wished to speak to F as she had asked I do, plus I didn’t feel it was ok to close my case.
He said he had emailed her to call me that day but she never called. I tried several times but only got told putting me through, and then I went around in a loop, by being put onto a waiting machine, and then answered again by the same person.


so I sent email.......

to the Housing manager

dear E,
I am writing to ask where you have reached with my case. My last email to you informed you that my Neurologist had said that my brain scars were due to 'small vessel disease'. I previously told you that the Neurologists agreed that if you wrote to them regarding my housing needs they were willing to respond.

I did receive a phone call to my house phone yesterday, Monday 10 October at 10am, from a woman by the name of F; she said she was from Housing Options team, and to call her regarding my case. I did not hear the voicemail until evening, so this morning I called the number 9am. I spoke to a young man who checked my files, only to find she had written that she had called last Friday and didn't get an answer, then called again yesterday, and left a message, but I didn't call back so closed my case.
He suggested I contact you for an update, which I said I would be doing, but I also stated that I still wanted to speak to F as she had asked me to call, plus I received no call as she wrote on Friday and didn't feel it was ok to close my case because I didn't respond the same day she left the message.
He therefore said as she was in a meeting at the time that he would send F an email asking her to call me, as of yet she hasn't called.
Yours Sincerely

Louise Clarke

Then sent email to MP update and included email I sent to Housing Manager,

Dear Mr D, sent email Tues 11 October

I am writing to you to give you another update on my case, following on from my last update I sent to you by post, dated 24 August 2016.

I attended my follow up appointment with my Neurologist, whom stated that the scared area of my brain was due to 'Small vessel disease'. I had been communicating with a Manager in Housing, whom I also updated on this. I also stated that my Neurologists had said they were willing to respond to any letter they wrote requested information.
 
I am currently unsure of where my case is at; so today I sent an email to the Manager I have been communicating with. E.. to ask for an update.

I have copied here the email I sent to her. As you can see a member of 'Housing Options' dept called yesterday, asking that I call her, but today I was informed she had closed my case. 
And still as I write this she hasn't called me back.

I thank you for your help in this matter.

Yours Sincerely

Louise Clarke



the following day I tried calling the Housing worker f again. And well , she answered the phone, stating her name, so I said I was pleased to reach her,

 Friday 14 October 2016 received standard letter from housing stating my rent was paid into my account, but it wasn’t put into my account until Monday 17 when I checked.

I phoned the department who deals with claims, as my rent had been increased back in August and although I had provided all the info required I had heard nothing, nor received a related increase in my Housing payment to cover this. I was told that it may be that’s all I’m entitling to. As the system shows they have the update on rent increase. She said I can check for on gov.uk Benefits calculator for any properties

18 October   
received email from Housing manager Tuesday,,, after phoning to see if f got new reference number,,, and as luck would have it she answered the phone, blah speaking. So I said oh goodie,,, I wanted to know, did you receive my email with the new reference number. She said yes she did and so did the Housing Manager. Oh thank you.


The email I received later that day from the Housing manager said.
Give her a couple of weeks,
which will be 31 October, ish

Went away to respite at sea Sunday 23 October 2016

my home broken into on Monday 24, along with 2 other flats; where they took computers and ipads. Luckily I had all my computers and technical equipment with me.

My landlords contacted me on Wednesday October 26 via email saying they had tried to call and text, but I didn’t receive any signs of this.

On Wednesday 26 October morning also I noted my tablet was no longer able to access any sites, even though it showed it was connected to the wifi. But my computers still worked.
Sent housing email as after looking at the gov.uk website I still see I’m entitled to full rent payment.
Today Saturday 29 October 2016 I am no longer able to transfer data via USB portals, so extremely difficult to put this data together as one whole. So although the response is due in the next few days from the Housing manager I feel it is best to update now and then again when she makes contact.

Thank you for reading. I know it was long this time, but so much was obstructed and miss directed I felt strongly I should share all, which has taken forever to get on top of, ready to send.

Below are links to sites pertaining to Small vessel disease. It seem quite a recent medical diagnoses for people with similar symptoms to mine. Even the falling over. but not the breaking.

Bye for now.

https://www.patientslikeme.com/conditions/618-cerebral-small-vessel-disease
What is Cerebral Small Vessel Disease?

The term cerebral small vessel disease refers to a group of pathological processes that affect the small blood vessels of the brain. Cerebral small vessel disease is most commonly related to aging and hypertension.




add small vessel desease link 
https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-29

Cerebral small vessel disease (SVD) is a frequent finding on CT and MRI scans of elderly people and is related to vascular risk factors and cognitive and motor impairment, ultimately leading to dementia or parkinsonism in some. In general, the relations are weak, and not all subjects with SVD become demented or get Parkinsonism

Symptoms of Small Vessel Brain Disease

 http://www.livestrong.com/article/161734-the-medical-conditions-that-cause-weakness-on-the-left-side-of-the-body/

Blood vessels travelling from the heart branch into smaller vessels inside the brain, delivering oxygen and nutrients. These small vessels can become abnormal with age, or conditions like diabetes and high blood pressure. People with small vessel disease have damage to the cables the brain cells use to communicate -- and to certain deep clusters of brain cells. The damage develops due to blockage of blood flow or bleeding from small blood vessels in the brain. While some people with small vessel brain disease have no symptoms, others develop problems with thinking, mood and movement.

Thinking Problems

Small vessel brain disease can lead to thinking problems. When severe, this is called vascular dementia. Although estimates vary, a June 2014 "BioMed Research International" article reports that blood vessel problems account for 20 percent of dementia worldwide -- second only to Alzheimer disease. Small vessel brain disease typically causes milder memory problems than Alzheimer disease, mainly with recalling information. There can also be difficulties with staying focused, problem-solving and planning tasks. Overall slowing of thinking and responding can occur.

Mood and Personality Changes

Mood and personality changes may signal small vessel brain disease. Depression can occur alone or along with thinking problems and can worsen over time. In contrast to Alzheimer disease, people with vascular dementia can have mood swings or personality changes early in the course of disease. They may become irritable or impatient or stop caring about themselves or their surroundings. People with small vessel disease may also develop uncontrollable and possibly inappropriate episodes of laughter or crying.

•  

Movement Problems and Other Symptoms

Small vessel brain disease commonly causes strokes, in which an area of the brain is deprived of oxygen and dies. Some strokes cause no obvious symptoms despite the brain damage. Other strokes cause sudden weakness or numbness on one side of the body, problems with coordination, difficulty speaking or swallowing, or double vision. People with small vessel brain disease typically accumulate tiny strokes over time, leading to problems with balance and slow walking due to trouble managing the sequence of walking. They are at risk of falling earlier than people with Alzheimer disease. They may also have urinary accidents due to a sudden urge to go.