Morning everyone, hope you've all got some sleep and have a good day to look forward to.
Just wondered if anyone else has noticed any heart issues in their loved ones with PSP? Mum unfortunately has a catalogue of conditions, diabetes, osteoporosis, COPD, high blood pressure and after a bad few days and elevated heart rate has just been diagnosed with atrial fibrillation and had anti coagulants and 3 heart rate tablets added to the maelstrom of meds. Waiting on cardiologist referral (December!! I love our NHS and so so grateful for it but two months for a heart referral doesn't help me in the middle of the night when mum says she can't breathe!) Anyway I just read a moving thread on end of life for this condition and one mentioned raised heart rate... Beginning to wonder if linked to PSP or if it's just my mums body taking the piss even more ??
Thanks guys ! Big hugs to all x
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Kelly55
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Hi, S was diagnosed with Atrial Fibillation about 6months before his stroke. Stupid doctor just put him on Asprin instead of Warfarin! Hence the Stoke, but that was the start of all his problems, or when I started speaking up. I had noticed things, that were starting to concern me, before that!
Whether it is a symptom? Who knows! All I do know is, PSP loves company, the more it screws up someone's life,the better!!!!
My husband has atrial fibrillation too, but also has polycythemia. I asked our doctor if he had looked in the medical dictionary to see what else he could throw at me ! Maybe this is a byproduct of psp after all.
you ar e a godsnedon this site and i do not want u to go under (again)
\it is v trying as an illness 00- io know as i am now getting fed up with it all after nearly 5 years since i was dxd but i think of "going to Switzerland" and no one wants to support me, then i think of all the ££ it would cost and think again.
i am lucky in that i can still do my tai chi/ sing in my choir / go to parkinsons meetings every 2 weeks / go and get my hair done ever week / and go to the hospice 1 day a week too
and altho i cannot now walk anywhere without a wheelchair and am not quite incontinent yet it is really that i am a burden on my carers which get s to me.
so please, do not give in to this PSP w ill you heady??
Thank you Jill, just the push I needed today! Don't worry, I'm not going to let PSP win, without it knowing it's been in a battle!!! Can't afford to, can I? We are talking about my husbands life here!
Do you have an iPad? I have just got S an App, to help him communicate! There are every day words on it, or a place to type what ever you want to get across, then you press SPEAK and hey presto, the machine says what S is trying to communicate! It's called Touch Voice. There are two version, we have both, but I think the basic one is the best at the moment, struggling to download the better version! Although it is hard work to get him to use it, when he does, it's having him back, he is taking part in life, instead of just letting it happen!
Oh, by the way, it's a long way to push yourself to Switzerland!!! Anyway, we need you here, with your input, you are helping to ease the suffering of our loved ones. I learn a lot from your comments, it's certainly helping me understand S a bit more, helps me curb my temper a LITTLE bit!!!
You are not a burden Jill ! Don't ever say that! We may have our moans on here as carers and it is exhausting caring for our loved ones but we do it because we love and care about you! It's great you are still so social and can chat on here and go out etc, don't lose that! I watched a good but sad movie about Alzheimer's the other day called 'still alice'
Good one for a wine and weep!
Keep your chin up honey, you're a fighter and don't let the PSP get you down. If it's a bad day I just think about what mum can still enjoy and that she has people that care around her. And she still has a healthy appetite so is bucking PSP trends by gaining weight with all the tasty treats I keep feeding her! Lol xx
A stroke too! Ah nightmare like it's not difficult enough! Mum is now on bisoprolol and an anticoagulant Rivaroxiban, it's a new drug and doesn't need all the blood tests like warfarin and is only one little tablet a day. So hard to figure out what's PSP, what's another condition or what's just coincidence! A lot of shoulder shrugging lately by me and the doctors!
Waiting for cardiologist review so hoping they might prove useful !
My husband was diagnosed in 2010, symptoms several years before and he has never had heart problems. His heart beat is always normal and strong. He has an enlarged prostate, which many men of his age have, and bouts of colitis which started in 1977. With age, many of us develop various medical conditions ( at 70, my mother in law was diabetic, had osteoporosis, arthritis, high blood pressure, horrific skin ulcers but not PSP) and PSP doesn't stop this happening so I suppose our loved ones can end up with many things wrong with them, or only ( wrong word!) PSP.
Your poor mum, too much to have to cope with. I hope she is made as comfortable as possible.
No problem with Brians heart. He has had 2 mini strokes this year. But no other medical problems. He is lucky because the only medication he takes is the eye drops for saliva. We have tried a couple of things but they made his symptoms worse so everthing has been stopped. And we don't intend to try anything else. Janexx
Sorry to hear about Brian's strokes, that doesn't help! Is he not on anticoagulants now? Although the PSP Neuro did say that if the patient falls heavily often then anticoagulants are to be avoided. That's good he's not on many drugs, I really wish mum wasn't, having to get her to take loads of drugs every day and watch her swallow them is horrible. She is Contemplating peg purely for that reason.
M used to have high blood pressure but since last year BP normal GP has reduced meds and is considering taking her off completely. Her pulse is strong and correct for sedentary person. So I do not think PSP is affecting the heart or viva versa.
That's good Tim, and hopefully the meds can be reduced. Mums GP at a meds review suggesting stopping one of mums blood pressure meds and a few days later she was in A&E with elevated pulse rate and an AF diagnosis! I'm sure it's probably coincidence or the med was masking the condition but it did start a spiral of a few bad weeks!
So difficult to know sometimes what's PSP and what's other conditions or age etc. she's always saying she can't breathe properly but the doctors shrug when I ask what's going on! But mum used to be heavy smoker too so guess maybe that's catching up with her.
Best wishes to you and M x
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like it's not difficult enough! Mum is now on bisoprolol and an anticoagulant Rivaroxiban, it's a new drug and doesn't need all the blood tests like warfarin and is only one little tablet a day. So hard to figure out what's PSP, what's another condition or what's just coincidence! A lot of shoulder shrugging lately by me and the doctors! 
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