My brother Andrew died from progressive bulbar palsy
It is a particularly fast version of Motor Neurone Disease
He was in his late fifties when it took hold.
For over six months I have been concerned I have shared some of the early symptoms of this horrible disease.
I have experienced increasingly troublesome moments of choking, sudden bouts of coughing and sudden moments of irritation in relating to swallowing.
I'm 57
The disease occurs in geographical clusters, and one such cluster remains in North Wales
For six months I have said nothing to anyone with the exception of my doctor who wasn't particularly helpful at first.
Last week I was finally reassured that I am indeed suffering from an atypical chronic rhinitis- an irritating but fairly benign condition that interrupted one of my favourite songs at the choir concert by giving me a sudden coughing fit.
I'm glad I never added to everyone's woes by not complaining at it at the time, but I'm saying that as the memory of those cold blood freeze moments , usually experienced all alone in the middle of the night, have now all but been erased from my mind.
Funny how your brain plays tricks on you
Now here are a few more of the favourite art entries
If you have any more please send them by Thursday!
jgsheffield@hotmail.com
Not helped by stress and worry. So glad it's good news.
ReplyDeleteI know those thoughts and I dont share them either. Onward and Upward.
ReplyDeleteYayyyyy! So glad you know what it is and what it ISN'T, John. Now you can rest easier.
ReplyDeleteGlad you don't have Motor Neuron Disease.
ReplyDeleteOdd when you see the words written down
DeletePhew! that's a big weight off your mind John.My lovely aunt had Motor Neurone Disease-she couldn't eat or drink or talk.When I visited her in the hospice she sat up in bed and chatted to me by writing notes in her notebook and passed it to me to read.Your times not "up"John- you have lots more living,loving and fun to have x
ReplyDeleteA great relief for you.
ReplyDeleteSo sorry you had that worry on top of the rest, now thank heaven resolved. Think you were right to keep stumm - people would have been so worried and out of concern and kindness would have maybe been asking about things thus reminding you of what y were trying not to overthink. A peaceful sleep tonight.
ReplyDeleteI was told a week ago now xx
DeleteThe relief must be immense and explains all the weeping.
ReplyDeleteSo much more than fat, old and unfit. You're also a resilient pongo x
Cheers mave, as you are
DeleteThank goodness! I know the feeling you are talking about and it is no good, at all. Maybe you can relax a bit more now. I'm loving the art.
ReplyDeleteI imagine your relief is exteme and your previous fears even worse!
ReplyDeleteA young woman i know carries Huntingtons and the blind panic I see on her face when she so much as forgets a word is heart breaking
It was a pernicious worry
DeleteOh, so pleased for your good news. My mum had progressive bulbar palsy, it is horrible for the sufferer and those who love and care for them.
ReplyDeleteI have a similar situation in my family's history. One uncle and one great aunt passed from ALS. It is a dark cloud I've sensed just over my shoulder for 25+ years now. One worry is could I be the next, and another is just simply could anyone be next - my mom, siblings, cousins.
ReplyDeletethe last pix looks like me (dirty girl that I am).
ReplyDeleteIs there treatment for the condition you do have?
ReplyDeleteThere's a few things I can try
DeleteA friend has a similar coughing issue, but due to hitherto undiagnosed reflux.
ReplyDeleteThat's another layer of stress off your shoulders. What a lot you've been carrying. xx
Excellent news. MDN is a beast.
ReplyDeleteYou need a month on a beach with young handsome fellows waiting on you,hand and foot..sending love and kitty kisses.
ReplyDeleteI know those feelings too, tho I don't have any such specific disease in my family history. They are the worst. I'm very glad you can let that worry go.
ReplyDeleteThank goodness one less worry for you John our mind seems to work overtime somehow I know the feeling I'm good at giving advice but don't always take it.
ReplyDeleteI really like the cheerful mountain scene today.
The relief of having a medical worry lifted is immense. I'm so glad your problem was benign, relatively speaking.
ReplyDeleteGlad you don't have anything life threatening but sounds like you could do with a holiday.
ReplyDeleteGood news, indeed!
ReplyDeleteLove The Pietà by Michelangelo and I was fortunate to see it at The New York World's Fair in 1964. Also love The Kiss by Gustav Klimt. You know Earth without art is just "eh"!
Hugs!
My coughing is from reflux. Sorry about your brother. I am glad your mind is at ease now about what you don't have.
ReplyDeleteSo pleased for you, JayGee. The worry must have been eating away at you (figuratively) on the inside for a long time so you've had superhuman restraint in keeping it, almost exclusively, to yourself. Now you can look forward
ReplyDeleteto 'onward and upward'.
I was sick on moaning about the divorce
DeleteI was not going to inflict another worry and moan upon anyone else...gawd too much
I'm sure I wasn't alone in thinking that you were remarkable in saying so little about your divorce (yes, really!) when it was clearly so painful for you - and when you did it was with showing no bitterness at all. Little did I or we know that there were in fact TWO 'elephants in the room'. My admiration for you, already significant, has just increased yet further.
DeleteI agree with you on this Raybeard
DeleteTess
I completely agree with Raybeard...
DeleteSo pleased you are okay. I know exactly what you mean about those cold blood freeze moments in the middle of the night.
ReplyDeleteGlad to know it's rhinitis and not MND. As you know, my sister has had MND for 14 years and is completely bed-bound. The reason she's survived so long is that her heart and lungs are still in excellent shape.
ReplyDeleteYes nick I remember.....
DeleteMy sister and I were grateful for your words at the time x
Good to hear your worries are calmed x
ReplyDeleteI am sorry you have been worrying about your health John and pleased that you have been given reassuring news about it. x
ReplyDeleteI guess your profession & family experience makes you hyper-aware of these things too. But fortunately it's something easily controlled (I have to take anti-histamines & use a nasal spray year round, and now they are no longer available on prescription in England, have stocked up for the Winter).
ReplyDeleteI'm not on top of it yet despite different treatments
DeleteIf it wasn't for Andrew I would have perhaps never thought twice over it
Do you know what triggers it? Is it solely allergy or is there a stress element? (A friend started having sudden choking episodes after his father died suddenly)
DeleteIn the middle of the night, it is odd how worries can expand like balloons - filling the spaces in our heads. Like other commenters, I am very pleased that this particular balloon has been popped.
ReplyDeleteNicely put YP
DeleteIt has been a shadow looming over me for 6 months at least x
Oh god what torture ! I am so glad that this is over and you can relax and make plans...and find happiness...
DeleteOh, John, you've been living in your own private hell for months. I'm so glad you got good news... and can get back to being completely relaxed, always content, and totally adorable (one out of three ain't bad).
ReplyDeleteSo relieved for you - that must have been a lot to carry, on top of all the fears about losing your home. Glad you're OK (well, apart from the rhinitis). Hugs. xx
ReplyDeleteWithout the bagged the rhinitis is nothing
DeleteWhen you are depressed and downhearted all sorts of symptoms seem to get exaggerated. For about three months after my mother died of a heart attack I was convinced that I was just about to do the same.
ReplyDeleteDue to your specific family history, I imagine that few others have ever been so glad to be diagnosed with atypical chronic rhinitis. I hope you have good luck with treating it.
ReplyDeleteWe all would be terrified knowing the family history. I has a Bells Palsy attack August 28th. I had severe headaches a month prior. At 2am I went to the mirror, saw my mouth and eye on the right side sagging and was sure I had had a stroke. A trip to the ER with a CTscan showed no bleeding and a clear chest xray. I was sure all that time it had to be a tumor or stroke....everything runs thru your mind as you say especially in the wee hours.
ReplyDeleteThere is absolutely nothing as valuable as good health. Nothing.
ReplyDeleteSo glad it's not serious even if it is bothersome.
The feeling of Relief is one of life’s unspoken joys.
ReplyDeleteOh gosh, and you kept all that worry to yourself. I'm so pleased everything is okay. That feeling of relief must have been wonderful.
ReplyDeleteTry cutting out milk and anything with milk products in it for at least four days and see if your rhinitis clears up at all, mine did amazingly well. I now know if I've accidentally had something with a trace of milk in it as my sinuses are terrible after about half an hour.
Always have a handkerchief with you.
ReplyDeleteI do
DeleteSorry to heat about your brother; glad you just got the scare.
ReplyDeleteI understand that lingering fear and "cold blood freeze" moments. (Very good description!) I have similar worries about hereditary illness related to my grandfather. Glad it's just good ol' rhinitis!
ReplyDeleteHappy to hear it's nothing serious.
ReplyDeleteWhen one is 'alone' with a problem it lays heavy. Glad to hear it is your olfactory apparatus and nothing serious. Hwyl Suz x
ReplyDeleteVery glad the weight is off your shoulders.
ReplyDeleteI know only too well those 3am blood freezing episodes. Glad to hear they should now be a thing of the past for you. What an utter relief for you.
ReplyDeleteStay well.
So pleased you have had your fears allayed over that illness - worry about things like this always strikes in the middle of the night.
ReplyDeleteYou can worry yourself sick. Glad the doctor finally allayed your fears.
ReplyDeleteSuch good news !
ReplyDeleteparsnip
I've said for years that the feeling of Relief is the best feeling of all!
ReplyDeleteSo very glad that you had good news, John.
Oh there is nothing like that feeling of relief!
ReplyDeleteAnd the feeling of relief that someone else feels when the news is good.
Wonderful news...
I'm glad it's just that. I work in cancer care and everyone who works there always worries they have cancer or some sort, myself included. I aspirate all the time too. I told my coworkers at least I knew what I would die of, aspiration pneumonia:)
ReplyDeleteSo glad you're ok. I think we've all been a tad worried about you lately. x
ReplyDeleteGood news indeed. So glad you have that worry behind you now. XXXXX
ReplyDelete