On My Own Two Feet-Amy Purdy

[stagehand5]

I am in the states and it seems that UK has a better network for info. on meningitis and I feel lucky to have found HealthUnlocked. I had bacterial meningitis and lost my hearing in 2011. I am reading a book Amy Purdy has put out about her experience with bacterial meningitis. Its very good and brings out real life experiences and its helping me understand and somewhat relate the dealings and major life change you can have. She has dealt with it very good. She lost her legs and has went on to not only walk again but became a bronze medal winner in the 2014 Paralympic Games and has went on to the do a TV Show here called Dancing with the Stars. Recommend reading for meningitis surviors

[StrawberryCream]

Hi. I was just about to welcome you but then clicked on your name and saw you posted about 9 months ago. I also had BM & S along with cerebritis, frontal lobe abcessses, strokes, sub clinical fits in 2011. I have some hearing loss in my left ear, balance problems and dysexecutive syndrome. It must be hard to suddenly go from a hearing person to losing your hearing. Do you have cochlear implants?

Thank you for the book recommendation. I will check it out with a view to buying it as I do like to read about other people's experiences. Amy Purdy has clearly grasped life and done incredibly well but I guess the chance and opportunity isn't possible for a lot of us. She obviously has a young age and fitness on her side.

Best wishes

[stagehand5 in reply to StrawberryCream]

I have one cochlear implant on my left side. I think my right was too badly damaged. Balancing problems since technically I am deaf. I use a cane now. Had to learn how to walk again and started out on a walker. Wiped two of those out so they are helpful but you must be careful. Cochlear implant was easy. It was done as a outpatient surgery. About two hours. Two weeks to heal and then I was fitted with one. Been great. I have Advanced Bionics. It was hard to go from hearing to nothing. I had no signs of anything. Became sick at work. Sent home after three hours. Found at home that evening and rushed to the hospital. Spent 45 days in the hospital, 4 in a coma. Woke up and of course didn't know what was wrong and didn't relaize I couldn't hear right away. Finally asked for pen and paper to tell people I couldn't hear. I was deaf around a year before I was able to get the implant. The states don't have a good program for situations like ours. I have gotten more info. from HealthUnlocked.

TakeCare

[StrawberryCream in reply to stagehand5]

Apologies for taking a while to reply but I have had my son home sick from school so didn't have the peace and solitude to be able to focus on formulating a response.

I can only imagine the awfulness of suddenly having gone from being a hearing person to being profoundly deaf. Initially I just heard a jumble of noise and couldn't understand speech but gradually it improved and now it has left me with some reduced hearing but at least I can hear. Yes I think in the UK if the deafness is realized at the time often the cochlear implants are done quite quickly. A year was a long time to wait and communication and engaging in day to day activities must have been extremely difficult. How do you find life with the cochlear implants because I have heard others one here still struggle with there limitations?

Also like you I have been left with balance problems due to higher vestibular damage and I did walk with a frame, then two sticks, one stick and now I can walk with no stick but still do go splat at times. In the dark I always use a stick and I also find my balance deteriorates if I am overwhelmed and cognitively fatigued by too many demands all at the same time.

That surprises me about the states as I always thought they were advanced with all there healthcare.

Take care

[stagehand5 in reply to StrawberryCream]

With the cochlear implant there are times like for example when your battery goes dead,bathing,sleeping that you don't have it on that you are deaf. In the beginning I had put myself in the frame of mind I would be deaf forever so when the option came to get a implant I was thrilled. The time frame would have been longer or not happened at all but one doctor I saw checked both my ears and noticed a lot of fluid leakage from my right ear and after checking it out found out I had fluid leakage from my brain which needed to be taken care of ASAP. At that time I didn't have health insurance. The company I was working for when I became ill and I became ill at work and was sent home sent me a e-mail after a short time in the hospital that my job was terminnated and my benefits also. I spent 45 days in the hospital 4 in a coma. The hospital wanted to know what I was going to do about my bill. We have a plan called Medicare here which the government runs. So much is taken out of your paycheck per week. You need to be a certain age to collect it but in a case like mine you can get early if you have enough credits coming from the years you have worked. Unfortunate I had the credits but not the age but due to my situation Medicare opened a six month window to have the operation for the fluid leakage and also to have the cochlear implant done. So if not for the first operation I might have not gotten the implant because there is a certain window of time. Yes we have good medical care but it all involves around the dollar Yes there are limitations with the implant but having it sure out ways not having it. Getting by before I had it my laptop computer was my communication and the old fashion pen and paper. I was 59 when I became ill and at that age sign language is hard to learn

Take Care

[StrawberryCream]

It is so difficult isn't it when you are trying to recover from a sudden and life threatening illness and there are financial pressures too. Thankfully in the UK we have the NHS so I didn't have to pay for my healthcare but I went from working to none working with no warning and as I was self employed I wasn't intitled to sick pay and initially fell in a benefits gap too. Obviously this was a very worrying situation for me as there was no other income coming into my home as I was a single adult with a young adopted child dependent on me. It was a nightmare situation and as I have not been able to return to work still is financially tough.

I was 52 yrs old when I had the BM & S in 2011 so we are both somewhat older to be contracting it. I feel much older than my actual age now! I spent 6 weeks in hospital with 3 weeks in a coma and not expected to survive.

Am so pleased that you did manage to get the cochlear implant as it sounds like it has made a huge difference to your life now. Do they think that you probably contracted the BM because of the hole that leaked the fluid even though this was not found till later? I think I have read somewhere that a very small hole through which fluid can leak can also allow the infection in. Good job it has been found and sealed as otherwise you would I think be at more risk of getting meningitis again.

[stagehand5 in reply to StrawberryCream]

I think that I contacted meningitis at my job. I was a contractor taking care of building maintenance at a jail here. There was around 700 to 800 prisoners and staff there. From research I have done a carrier might not know they have it and can simply cough or breath on you to spread the germ. I talked to my state workman's comp representative about my case and he said if I could just get a doctor to say I could have got it at work they would cover me taking care of my bills and living expenses.Unfortunate none would do that but they did file liens against my property to recoup there expenses. I was a very active person before I became ill so it has been a big adjustment for me My kids are grown and I have grandkids and I am oldr than you. I worked three or more jobs most of my life. I worked full time job in building maintenance,taught classes at the local colleges and vocational schools for over 25 years and worked concerts for the Cincinnati Symphony doing there shows and rock and roll and country shows at there summer venue. Thought I had my retirement planned out. Retire teach part-time and work the concerts. That all ended in one day. I have went back to listen to some shows but with the implant it doesn't filter sounds so I just hear the loudest sound usually the drums and I really loved music.

Take Care of Yourself

[stagehand5 in reply to StrawberryCream]

To help with my balancing problems I have been doing some Yoga. I found a book called Yoga for all of us by Peggy Cappy. It shows you how to do Yoga if you are handicap. Some cases you use a chair to assist.

Take Care

[stagehand5 in reply to StrawberryCream]

What is the NHS. Is that where the government handles all the insurance needs. If I had no money,savings,retirement,property I would have been put into a program called Medicaid which is different than Medicare. Yes is was and still is very stressful with money issues in my case. I am in such a catch 22 situation.. In another six months I should have every thing straight. Hope you get better. Your still young. It will take a while to get your strength back but put your self in a postive mood and you have a child to raise.

Take Care

[StrawberryCream]

My understanding of Meningitis is that it isn't something we as such catch as most of the bacteria or viruses that cause meningitis are the same as the ones that cause flu etc and most people don't end up with meningitis. However in a few of us for some reason our bodies let the infection cross the blood brain barrier and research suggests that that seems to happen when we are stressed and our immune system is suppressed. The infection can also enter through tiny holes in the skull or because there is a csf leak that again means there is a v small opening that allows the infection in. So that maybe explains why your Dr was unable to say you caught it at work. What strain of BM did you have? My samples apparently went missing and never arrived at the lab so although it was without doubt BM they don't know what strain.

I have been under a balance clinic and have vestibular exercises that I have to do and my balance has improved but because of the damage I have been told that it will never completely recover and darkness, fatigue uneven ground and rapid movement etc will always adversely affect it. Which is what happens and at times I still go splat!

The NHS is the National Health Service and in the UK all medical care is free we do not have to have insurance. Some people have private health policies if they can afford it because then they don't have to wait on long waiting lists for hospital appointments or operations etc. It is a bit of a postcode (zip code) lottery though as to what specialties are available to you and how good they are.

That is very kind of you to say I am still young as I am now 56 yrs old so not so many years behind you. I am an older mum and since the BM it is very hard parenting a very active, exuberant and loud 9 yr old! But he is what keeps me striving on. I have also sustained a frontal brain injury as a consequence of the BM so have dysexecutive syndrome and that will not recover or improve anymore now. I have had to learn ways to manage the difficulties it causes me with daily living.

Like you financially things are very difficult now we do have government benefits that you can apply for but the assessment criteria is now quite hard to meet and even if you do get awarded them they are not very much and not enough to live on. Fortunately I own my house so don't have rent or mortgage to pay just utility bills and living costs. But have had to draw heavily on savings I had which are dwindling fast.

Take care

[stagehand5 in reply to StrawberryCream]

Thanks I am learning a lot from you. More than any doctor that I have seen here. I have noticed lately more problems walking at nite. I don't have the strength anymore that I used to have. I feel the need here in the states to have a system set up to assist older adults who have meningitis. When I talked to personnel at Health UnLocked they are helpful but they only deal with your part of the world. In the book I told you about Amy Purdy she set up a non-profit company to assist athletes with loss of limbs. I feel the need for assistance for meningitis here. There are programs for children which is great but nothing for adults. Something I am going to look into.

Keep In Touch

[stagehand5 in reply to StrawberryCream]

Looked up Dysexecutive Syndrome on Google. I don't believe I have it but none of the doctors I have dealt with have brought it up or checked for any signs. I don't say they don't care and I have seen specialist for example infectious disease doctor and nothing has been said. i feel the need for more knowledge and support not just be given medicines.

Take Care

[StrawberryCream in reply to stagehand5]

Hi once again Stagehand

Sorry it took a while to respond. The support for post meningitis here is through charity organisations that have been set up like 'Meningitis Now'. Ther are some other research organisions as well who do offer info and some support. Amongst the medical profession it is still very misunderstood with lots of Drs still thinking that it is either like flu which you are expected to fully recover from or don't recognize the problems as being the result of meningitis unless it is the blatantly obvious limb loss that happened at the time. It is hard to find the appropriate support in the health services. My Brain Injury was assessed by an Neuro Psychologist about a year after I had meningitis because spoke of difficulties I was having but hadn't realized this was probably because I had suffered an acquired frontal brain injury. I thought I was just imagining it or just not getting on with managing daily life etc but then felt huge relief when it was validated as me genuinely having a BI by the Neuro Psych testing. A lot of what I have found out has been through my own efforts and asking for things to be checked out. Even though the BI has been diagnosed that too is a hidden disability that not even the medical profession fully understand and the specialist services are sporadic and not accessible to all. Again it is a charity organisation that I have sought info, advice, help, support etc from. In he next couple of months Headway are starting up a day centre x 1 day a week in my area and I am very much looking forward to attending to be amongst people who understand this hidden disability as society don't. I am guessing because people can't 'see' your deafness that you meet too with misconception and lack of understanding?

Best wishes

[StrawberryCream]

This is a quickly as things to do with my son at the moment so will respond more later - have you googled meningitisnow.org It is a UK organisation and the one that this Site is set up and managed by but there actual website has lots of helpful information.