PDA

View Full Version : Bulbar plus seven years living.



pete
14th February 2015, 13:15
For those that are interested, I have tried to put in my experience about getting tested to allow the family and I to fly with MND . Despite having no breathing problems attributed to MND ,it's mandatory to be tested to see if your fit and won't be affected by breathing pressurised air when flying . As the oxygen content in aircraft is less in the air we breathe at ground level, firstly it's yet another expense,and it's variable so depends on where you live and who tests you, we paid 80 so not bad given the length of the test, we had it done at the respiritry ward in hospital , you get the standard FVC test,sniff test before having bloods taken from your ear lobe, then a face mask for twenty minutes to simulate breathing in the same air as a plane, apart from the dislike of the mask it felt no different , however it would have if my breathing was affected, being monitored during the test I noticed my sats dropped to 92 from 96 and my heart rate increased all normal so they said,another blood sample taken twenty minutes later and a third just after the test completed.
So the result was I passed ,in the event of me failing, it would have meant yet more expense as you have to buy the cylinder of oxygen from the carrier ,you cannot use another cylinder (nhs) on a plane as far as I know.
So a bit of good news for once, the accommodation booked the WAV booked in Portugal and the meet and greet booked both ways just to make it less of a hassle for my wife and daughter and the most important member my three year old granddaughter who is looking forward to the flight . Can't wait to get some sunshine and warmth . Hope this helps others who find themselves in a similar situation.
Regards
Pete

Springtime
14th February 2015, 13:41
Thanks Pete, didn't realise you had to pay for the test! More money there!!! This holiday is becoming more expensive by the minute.

GrannieAnnie
14th February 2015, 14:30
Hi Pete, when booking your holiday did you have to tell them you had bulbar onset. When I flew to New York at Christmas, I only booked a flight, everything else was booked separately and It never occurred to me to tell them I had MND and all I had was a card I downloaded from the airline website saying I had MND and could not speak. No one challenged me and in New York I got a gold card to get through security without having to take coats/shoes off. Is it If you use a Bipap that you have to tell them if you want to take it on the aircraft. Ann

Barry52
14th February 2015, 18:20
Hi Pete,

Thanks for posting this useful guide. I for one was not aware of the need to be tested. I always tell my team at Sheffield when I am due to fly and not once has this been mentioned. Did the positive test result make it easier for you to get insurance?
I have insurance and I am flying to Egypt on Tuesday so no time for a test but I will investigate before the next trip.

Barry

Terry
14th February 2015, 19:07
Good to hear you're both getting away to sunnier climates.

I don't think your insurance would be any good if you don't tell them about Mnd. It cost us over two thousand pounds to bring my mum back from the Canaries but could be a lot more if ill on flight and they choose to stop or divert. Guess you had a separate insurance so not much need to tell them if you walk OK Ann.

Love Terry

willsandco
14th February 2015, 19:44
Hello Pete, so pleased you are going. It will do you a power of good to get out and have some sunshine. I presume you declared MND to your travel insurance company. I hope you found one that wasn't exorbitant because some of them are. Love Joycie x

pete
14th February 2015, 21:22
Thanks Pete, didn't realise you had to pay for the test! More money there!!! This holiday is becoming more expensive by the minute.

Hi Spring,
You know that nothing's cheap when your dealing with any disability, ,from day one we tried unsuccessfully to get help, most rejected us because we hadn't sqandered our money but chose to save over the years , but I admit I makes me livid when I read about the scroungers getting away with everything and legitimate folk are refused , I never wanted or expected to claim for my illness, why should others pay because I was unlucky in health, but it does gall me when I read about the low life's who really don't deserve help, but get everything and live well while other have to fight tooth and nail for any help, hope you and Jim are as well as you can be .

Pete

pete
14th February 2015, 21:34
Hi Pete, when booking your holiday did you have to tell them you had bulbar onset. When I flew to New York at Christmas, I only booked a flight, everything else was booked separately and It never occurred to me to tell them I had MND and all I had was a card I downloaded from the airline website saying I had MND and could not speak. No one challenged me and in New York I got a gold card to get through security without having to take coats/shoes off. Is it If you use a Bipap that you have to tell them if you want to take it on the aircraft. Ann

Hi Ann,
It was because when we booked our flights with Ryanair who are very very helpful and spent time discussing my needs ,it was they who said we needed a fit to fly because I was taking my wheelchair and have arranged to give assistance from arrival to boarding both ends and even meeting us on return by bringing our WAV to the arrivals. I decided that the less stress on the family was the very least I could do considering they are taking the aged and infirm old geezer on his hols .
Pete

pete
14th February 2015, 21:47
U
Hi Pete,

Thanks for posting this useful guide. I for one was not aware of the need to be tested. I always tell my team at Sheffield when I am due to fly and not once has this been mentioned. Did the positive test result make it easier for you to get insurance?
I have insurance and I am flying to Egypt on Tuesday so no time for a test but I will investigate before the next trip.

Barry

Hi Barry,
Hope the Egypt trip goes well, we used World first for insurance ,the guy there spent ages talking with my daughter suggesting the best way to give the best value for all of us, it worked out 136 for the bride and me ,they also said a fit to fly was essential because of MND and the length of time I have had bulbar I don't as yet seem to be affected breathing wise they said at the clinic you cannot assume that because you feel ok at ground level, it will be the same in an aircraft because of the reduced oxygen content , All for peace of mind really, if I did suddenly get worse or check out ,it's good to know the family won't have any further hassle, because they really do get little to non help from the system here.
Pete

pete
14th February 2015, 22:01
Good to hear you're both getting away to sunnier climates.

I don't think your insurance would be any good if you don't tell them about Mnd. It cost us over two thousand pounds to bring my mum back from the Canaries but could be a lot more if ill on flight and they choose to stop or divert. Guess you had a separate insurance so not much need to tell them if you walk OK Ann.

Love Terry

Hi Terry,
Yes you do hear of horrendous problems with getting back home, and add wheelchairs and all that entails ,I just wanted to try and cover all possible risks, though I am aware that nothing's foolproof I am by nature an optimist so try to not think of things going pear shaped , and hiring a WAV in Portugal isn't easy ,we are told there are only three in the country , but the people who own the villa are very experienced in disabled visitors ,are meeting us at the airport to get us settled in ,have arranged the WAV ,fingers crossed that all goes well .
Pete x

pete
14th February 2015, 22:17
Hello Pete, so pleased you are going. It will do you a power of good to get out and have some sunshine. I presume you declared MND to your travel insurance company. I hope you found one that wasn't exorbitant because some of them are. Love Joycie x

Hiya Joycie,
I am a sun lover ,and always feel better when the suns shining, we did inform just about everyone about my limitations , luckily I still have good upper body strength so I can stand and shuffle about,so not reliant on others yet , but the fine motor skills are going west, but we found World first Insurance to be the most helpful and advised us to take separate cover for me and the other half and it was half the cost of others for better cover .
Pete
X

berdbrain
15th February 2015, 14:26
How lovely for you all Pete.......I do wish you bon voyage...it looks like you have cyr....'covered your rear' or cya if it doesn't offend anybody!!!Have the most wonderful time...getting some sunshine is always good. Let us know how you get on and how many sand castles you built with your granddaughter,
much love
XXXXXXXXXXXXXXXXXXXXXXXdebbieXXXXXXXXXXXoooo

pete
15th February 2015, 14:42
How lovely for you all Pete.......I do wish you bon voyage...it looks like you have cyr....'covered your rear' or cya if it doesn't offend anybody!!!Have the most wonderful time...getting some sunshine is always good. Let us know how you get on and how many sand castles you built with your granddaughter,
much love
XXXXXXXXXXXXXXXXXXXXXXXdebbieXXXXXXXXXXXoooo

Aw Debbie,
Always great to hear from you ,I have missed all those kisses ,yes it was a tough one ,should I risk spoiling the family's break, and just stay home, but it was the chance to see the little ones first trip on a plane and see her face when she saw the villa with the pool !!, so it was a no brainer ,unbelievably it's been three years I honestly didn't think I would ever see, I feel so lucky to be honest ,still will most definately let you know how things go ,you keep safe and thanks so much for your for your post.
Love
Pete
XXXXXXXXXXXXXXXXX

ccinjersey
15th February 2015, 14:47
Have the time of your life Pete :) ! Enjoy the sun and the warmth, and have fun building those sandcastles with our little princess.

Hugs & kisses to all
CCxoxo

Stay home ?? Nonsense!! You are here, that's what matters to your family and all those that love you. ENJOY :) :)

marieline
16th February 2015, 03:10
Hello Pete,
You are the cautious one, i am sure you will pass the test. My breathing was a lot worse in 2007 because my respiratory system hadn't yet compensated and it didn't even occurred to me that it could affect me in the air.
Since then i have travelled every single year except for last year. I am hoping i will manage again. My last flight i upgraded to first class to have that extra amount of comfort and services. It come with a price but my travel is a lot smoother and quicker.
You will be fine, enjoy your holidays Pete.
Best wishes x
Marieline

BlueEyesOhio
16th February 2015, 04:07
Pete,
Glad you are going on vacation. It really sounds like it will be a good time in the sun. We could use some sun here. It was 9 degrees below zero here this morning. BRrrrrrrrr. That's much too cold for me.

Have fun!

(((((((((((((((((((((((((hugs))))))))))))))))))))) )))))

Lynne

pete
16th February 2015, 22:05
Have the time of your life Pete :) ! Enjoy the sun and the warmth, and have fun building those sandcastles with our little princess.

Hugs & kisses to all
CCxoxo

Stay home ?? Nonsense!! You are here, that's what matters to your family and all those that love you. ENJOY :) :)

Hi,CC,

Thank you, will be trying this as a test to see if we cope, i can't say I am relishing the assistance being it's the first time in my life I have been forced to admit I can no longer manage to get around on my own it may well be pride mixed with having to accept how vulnerable we become with this disease, another aspect of MND that I hadn't thought about until now.
Pete
XxxxxXXX

willsandco
16th February 2015, 22:37
Pete, I am fighting the same demons here. I know I cant cope on my own, even going outside in the garden alone is forbidden now. It is a hard pill to swallow when you have always been so independent. It is only this week that I have become so aware of my vulnerability. I have come back up north to my daughters house for the first time in two months and my deterioration is much more obvious than it is at home. There are stairs here and chairs which are more difficult to get out of and, dare I say it, toilets here are much lower! I have registered for Shopmobility now for a motorised scooter so I am accepting it now, I suppose. It is all a tough pill to swallow. Love Joycie x

pete
16th February 2015, 22:38
Hello Pete,
You are the cautious one, i am sure you will pass the test. My breathing was a lot worse in 2007 because my respiratory system hadn't yet compensated and it didn't even occurred to me that it could affect me in the air.
Since then i have travelled every single year except for last year. I am hoping i will manage again. My last flight i upgraded to first class to have that extra amount of comfort and services. It come with a price but my travel is a lot smoother and quicker.
You will be fine, enjoy your holidays Pete.
Best wishes x
Marieline

Hi Marieline,

Yes of course Your right, it's just trying to cover every possible thing that can go wrong, and not being left in a mess because we didn't cover all the bases. Once this goes ok' if there's a next time we will know what to expect.

Hope your trip goes well and without any problems and why not treat yourself,you deserve it, I am looking forward to your post about your trip when you return ,we will be thinking about you while we dither in the UK.

Very best wishes
Pete
X

marieline
17th February 2015, 02:30
Hello Pete,
You will have a fantastic holidays with your family so exciting, the closest to Spain i've been has been to Andorra. , remember eating paella there when i was 26.
With my new gadget i am hoping that i will be able to walk in the ocean more frequently without the brain swirling around. And i will have some rhum punch of course and just let my family spoil me and fatten me up. I just hope it goes well as well.
Life goes on
Best wishes x
Marieline

Springtime
17th February 2015, 11:57
Pete, I think you will have a brilliant time and its something good and exciting for you to focus on. X

pete
17th February 2015, 13:52
Hi Spring,

Just hope it is worth all this extra expense and me getting even more grumpy because folks don't ever listen to me, just assume because your in a wheelchair you somehow revert to a four year old, who has no input into anything , and what really pushes the button is when people don't look at me and talk about me to the wife or daughter asking how I am !!!!, what's worse is these people have known me for years, strangers are a lot less hardwork .

Pete

Nettie B
17th February 2015, 13:57
There's no excuse for people to that to you Pete. I know you make every effort to communicate with people. The word for today is RESPECT.

pete
17th February 2015, 14:46
There's no excuse for people to that to you Pete. I know you make every effort to communicate with people. The word for today is RESPECT.

Hi Nettie ,
I try to see this from both sides, I know a lot of it is down to not knowing the way to not offend me ,but if they would not insist on speaking very slowly or patting me on my shoulder as a way of empathising my condition, I have never felt ill since being diagnosed and besides not talking and not being able to walk, people think your somehow mentally challenged,I try to tell folk that I have not changed inside one bit, I am very aware of my situation and always play my introduction stored on the iPad when meet someone for the first time,still love music, and depressing as the news is daily still keep upbeat about life in general , so nothing much has changed ,I still challenge the system when seeing doctors who tell me what I should do having bulbar MND ,I remind them we are very much individuals who I for one don't have to have things I don't need ,for me it's my way of living day to day dealing with what this disease decides to do next, eating is tricky but it's worth experimenting with foods rather than accepting the way to go is a tube fed life, for some this may well be not an option but in my case it is ,I am sorry for those that do not have a choice but for the medical bods who see this as the one and only way is disgraceful .
Best wishes
Pete

ccinjersey
17th February 2015, 15:15
There definitely seems to be a lack of respect these days. To me it seems people have become so self absorbed, and rude in their own little worlds, they often forget and turn a blind eye to those in need of a little more care and compassion.

As always you hit the nail on the head Pete You are you and always will be, a Friend, Father, Husband, Grandpa…for those that cannot see that it is sadly their loss, but unfortunately a bit of yours as well. Strangers are bad enough, but to be treated that way by friends is inexcusable.

I witness it with my own dear friend. At first it used to anger me, but now it’s become so routine. Her family and friends will ask me or her partner how she is and doing instead of visiting her. My response is always the same, ’have you gone over for a visit she would love to see you’. Then there is always the same response back ’I don’t know what to say to her’. Hate to sound negative but it’s such a lame excuse to me. I usually just shrug and say ‘you don’t have to say anything, your there’.

Sorry Pete that you have to experience that, no one should be treated that way. Many people still have not learned that lesson to treat other as they would want to be treated themselves.

From one music lover to another Pete, this one for youJ I know the lyrics, but hearing your words and prospective on this illness really makes me understand what this song is singing about.

xxoxo

www.youtube.com/watch?v=egY8rUpxqcECached

pete
17th February 2015, 17:05
Hey CC,

Couldn't be anything else could it, Sung by the greatest ever often copied but never equalled

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

GrannieAnnie
17th February 2015, 18:27
Well, aged and infirmed old geezer - good on you. Ryanair have certainly upped their game and that's good to know as their reputation is not always good. Wonderful to have the WAV waiting for you too. Hurrah for Ryanair we will certainly give them a look next time.
I've read some of your other posts about being bypassed by people. I went to the dentist last week and when he started to talk to Tim my husband, Tim put him right (nicely of course). You are right, it is difficult for some who are trying their best to deal with our situation. I have a laminated card which explains that I have no voice, am not deaf and can understand perfectly - my first attempt at the card said I cannot speak, am not deaf and certainly not daft!! but I wanted people on my side so changed it!! On the whole I find shop assistants really helpful and as I can still drive am able to 'do' the shops still - its a woman thing!! Your holiday will be great and I envy you the warmth, how I miss the Med and my boat. Cheers now A x

willsandco
17th February 2015, 20:43
I take laminates everywhere. When I was in hospital having the PIG procedure I had three saying "Yes" "No" and "Thank you" and everyone was greatly amused, especially during the procedure. I have one in the car with a brief explanation and emergency contact information - Peter wont let me go out driving without it! We just have to adapt and evolve, don't we? Love Joycie xx

pete
17th February 2015, 21:30
Pete,
Glad you are going on vacation. It really sounds like it will be a good time in the sun. We could use some sun here. It was 9 degrees below zero here this morning. BRrrrrrrrr. That's much too cold for me.

Have fun!

(((((((((((((((((((((((((hugs))))))))))))))))))))) )))))

Lynne

Hi Lynne ,
We Brits live in a country with no really violent weather ,most we get is a few feet of snow,in Scotland or lots of rain,it never reaches extremely low temperatures or high ones for long periods ,that's why we have to visit other countries for some decent sunshine,the UK is a beautiful country just can't rely on the weather for holidays, I can't wait for springtime sooner the better.

Wise owl
18th February 2015, 14:53
Hi Pete, glad you are getting away to the sun in Portugal. Just to let you know that we used Ryanair last year using my own wheelchair & was so impressed with how we were treated, that I had to let them know of what a good service they had provided. We have also used World first insurance, & found that they realy do take more consideration of what level you are at with M.N.D. We had found that some insurers just didn't want to realy bother, & so loaded the prices.
I'm sure you'll have a great time with your family Pete. Let us all know when you return.
Regards Mick.

berdbrain
18th February 2015, 18:44
Well Pete I have huge respect for you......I have never met you obviously but you have been a rock when I needed good advice and support, please God you just carry on as you have been and get to see some more milestones of your granddaughter's. I have seen The Theory of Everything and I hope it opens people's eyes to MND. I know you don't believe in God but I do and so I will continue to keep you in my prayers.
you are my Sheffield superstar...I don't know many people north of Watford!!!
best wishes once again to you and all your family.........
xxxxxxxxxxxxxxxxxxxxxDebbiexxxxxxxxxxxoooo

pete
18th February 2015, 19:59
Hi Pete, glad you are getting away to the sun in Portugal. Just to let you know that we used Ryanair last year using my own wheelchair & was so impressed with how we were treated, that I had to let them know of what a good service they had provided. We have also used World first insurance, & found that they realy do take more consideration of what level you are at with M.N.D. We had found that some insurers just didn't want to realy bother, & so loaded the prices.
I'm sure you'll have a great time with your family Pete. Let us all know when you return.
Regards Mick.

Evening Mick,
That's good to hear, talks cheap isn't it ,but as you have used both companies and found them to be good just takes away another worry, I have to admit I was listening as my daughter spoke with Ryanair and the guy was just brilliant taking time to make sure we got everything we asked for . Much the same with the insurers who as you say we're very aware of MND and all that involved, thanks again for your post it's just taken away any lingering doubts.
Best wishes
Pete

pete
26th February 2015, 22:02
Well Pete I have huge respect for you......I have never met you obviously but you have been a rock when I needed good advice and support, please God you just carry on as you have been and get to see some more milestones of your granddaughter's. I have seen The Theory of Everything and I hope it opens people's eyes to MND. I know you don't believe in God but I do and so I will continue to keep you in my prayers.
you are my Sheffield superstar...I don't know many people north of Watford!!!
best wishes once again to you and all your family.........
xxxxxxxxxxxxxxxxxxxxxDebbiexxxxxxxxxxxoooo
Hi Debbie ,
The respect thing works both ways Debbie , I think we both gained from our posts not a one way journey I can assure you, as for the next goal it's reaching the first day at school, a bit ambitious I know but I thought that three years ago about reaching pension age ,so who knows, I admire you for believing , and it's something I wished I could ,maybe one day!.and if you ever venture North of Watford you will be very welcome .
Pete
XXXXX

bakeit Forum