I had to call the doctor to see Colin yesterday. I've mentioned before that periodically he has periods when his temperature spikes, his breathing is rapid and he makes noises from his throat. It has gone on for an hour or two, or several hours. During Wednesday night it started but by the morning he settled down. During Thursday morning it started again but this time didn't stop. He became quieter in the evening but noisy again so I phoned the surgery at 8 am yesterday. I delayed as I could still keep him fed and hydrated through his PEG, the first time it happened I acted sooner. I filmed C on my phone in case he settled down before the GP arrived. The doctor finally came at 5.30pm. He checked him over and as I thought, there is no sign of a chest infection. He said he probably had mucous deep in his throat and was trying to clear it. He also said that as the illness progresses, the incidents of this happening will probably become more frequent and last longer and intimated that one day he may not survive an episode. He mentioned hospital but said they wouldn't be able to do anything and he was better off at home. He wasn't our doctor but he was lovely. He said PSP is such a cruel disease. He said if you smoke you know you may get cancer, if you drink you may get liver failure but PSP just seems to hit indiscriminately. I told him of the report I read about the possible link with metals and how I thought it may be to do with years of UC which C suffered with, depriving his body of nutrients. He said it sounded plausible.
He was here for ages, just chatting. There is always something to laugh about in most situations. When he arrived I was telling him that I had taken C's temperature several times during the day and then realised I had put a glass, mercury thermometer under his arm about 30 minutes earlier and had forgotten about it. I'd turned him and sat him up in bed since then. I put my hand under his shirt to retrieve it and it had dissapeared. So with the GP watching I was feeling C all over, terrified I may have stabbed him if the glass had broken. I couldn't find it so the doctor continued with his examination. When he finally left, he said to call the surgery if I'm concerned and, "Dial 999 if you find a thermometer sticking out of his body". We both laughed and I did find it still intact, thank goodness. When the GP left, C suddenly became quiet, breathing became normal and he went to sleep. I think he was relieved he wasn't going to hospital. Today he is back to "normal".
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NannaB
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Oh NannaB the illness so so unfair, hope Colin is ok this morning, and you got a good night sleep!!!!! Things move so fast sometimes, sending you a big hug, you are an inspiration to us all š¹š¹š¹š¹š¹
Thanks Yvonne, he is definitely quieter but only managed enough yoghurt to swallow one tablet. I think the time has come for medication in a different form.
What a fright for you both. Can you send that doctor to me when we need one. It is so reassuring when they take time to discuss and empathise, at stressful times like you have had with C. Glad that he is back to 'normal' long may it last. Big hug.
Oh NannaB and Colin what a day or so for you!!! Didn't Tim aka Amilazy or was it Ketchupman have the same experience with their mates? I must look into why the spike in temp happens. B has not had this but it's best to be prepared.
A nice Dr? One who makes house calls and chats for a bit....One who can see the funny side of it all.....well now if that's not good medicine, I don't know what is.....
I am glad to hear C is feeling back to normal....I hope you are feeling good
It was probably me Kim's temp was going up and down and her neurologist (movement disorder specialist) told me it was because her body was shutting down. That was back in December 2015 and she's still with me, albeit a little worse month by month. We've had hospice involved for almost 7 months. I really think she's still with me because of all the prayers that have been lifted up for my sweetheart. I struggle with why God would allow this disease to exist, but I have faith that He has His reasons.
You are strong and still full of love for your wife...this is good to see....
Thank you Mr Hienz!
We are troubled on every side, yet not distressed: we are perplexed, but not in despair: Persecuted , but not forsaken; cast down, but not destroyed,
II Corinthians 4:8,9
For the eyes of the Lord, Mr. Heinz, run to and fro throughout the whole earth, to shew himself strong in the behalf of them whose heart is perfect toward Him.
Where did you find such a lovely doctor? And know a bit about PSP to boot!!!! Sounds like a trying time for you Bev, take it easy, make sure you are getting as much rest as possible.
Hi Deb so sorry to hear you have been having an extra worrying time , it can be so frightening . Has colin or maybe you signed a do not recusitate . We have quite recently . Neither of us want John to go into hospital and I was afraid if one day I wasn't well or not able for some reason they would rush John in if he was having one of his days when he doesn't respond .
Even at the most difficult times there is usually something that happens to make you laugh .
Would be a good idea to have the Meds that you can use in the peg . You need to get everything to make your life less stressful for both of you .
I can't remember are you having palliative care nurse .
Please take care of yourself . Thinking of you sending a hug with warm arms . Xx
Oh, how worrying but how uplifting to have a dr. so understanding. I usually find dr.s a bit wary about humour at first. I expect they have to be careful. But it helps so much to make a human contact doesn't it ? Personally I also like it when they are direct with their knowledge. Can't bear waffle.
Wish I could give you a real hug. Here's a virtual one.
Hi Cabbagecotage, no we don't have the palliative nurse yet. Unfortunately the two med is taking are both slow release and can't go through the PEG. They will be in suppository form and have to be put straight into his lower bowel. Not something I'm looking forward to but nothing I haven't done before. I don't suppose C will like it much either. He has had a DNR for some time now. I keep it in his wheelchair bag as I have to take it wherever we go just in case. I've written it's whereabouts in big letters on his carer files in case I'm out when anything happens but hope I won't be.
Thanks for the warm arm hug. I've had the heating on again today but it finally warmed up this afternoon.
so glad all is ok for the moment, doctor sounds lovely, We have had a really bad few days, hubby is dehydrated and now in hospital, it happened so suddenly, he can't swallow, tonight he is on the drip and getting back to whatever is normal, I think they will be fitting the Peg, I just can't get my head around it, it's just come too quick, I'm a bit numb at the moment, think it's all just sinking in..xx
So sorry this has happened so suddenly so has come as a shock. C had his PEG because I couldn't get enough food or nutrition into him but he was still swallowing. He was dehydrated and losing weight. He isn't eating much at all now and although we had the doubts about having the PEG, I'm very pleased now. His skin has improved and he is maintaining weight. He isn't a well man but more comfortable.
Thanks for sharing as you do, NannaB. I had been disinclined to recommend a PEG until you went ahead. I tried to discuss it with my guy last night. His chewing and swallowing are becoming uncoordinated, so meals are getting longer and he is getting less food. He had been steadily gaining weight the past two years, as I was deliberately fattening him up with this turn in mind. In just the past two weeks or so I have noticed the difference. Luckily he still does very well with the ice cream that he loves. Salad is harder!
Anyway, he said I was being premature in bringing it up, and simply declined to tell me what he might choose if it were needed. Since he has trouble speaking, I was impressed by his getting that much out so clearly. i guess it's going to be up to me.
I don't know how I could ever have coped so far without you and the rest of this great community. Thanks, always. On we go. Love, ec
Hi EC, had the same conversation with S this week. Although he can barely communicate now. He managed to write on his wipe board, NO, not at the moment. But he may reconsider if he gets more UTI's. His eating is so slow now, barely gets a break between meals. I am reducing the amount I put on his plate, but upping the calories. All the things we gave up, to try and keep the weight down, over the years, are back on the menu. Full fat milk, rice pudding, chocolate, all the good things in life. I have to sit and watch. Now that's really not fair!!!!!!!
I'm cleaning his plate for him too often, and feeling it! Luckily I don't entirely share his sweet tooth. Unfortunately alcohol doesn't come in low calorie versions. (Light beer is an abomination and doesn't count.)
Heady and Easterncedar, I've lost a stone in weight since C stopped eating. The trouble was, I was eating the same food (not liquidised though). The HENS who advise on the PEG told me not to give him the main meals now as he can't take enough and gets all the nutrients he needs through the PEG. Instead I give him luxury puddings, ready made. I stand in the supermarket looking for the puddings with the most calories. C has a very sweet tooth now so they slip down nicely. It's disappointing I'm still over weight according to all the charts but am feeling fitter AND I can now see my toes when I stand up straight and just bend my head. Whey hey!
PS I still have a glass of wine on Fridays and several on my once a month wine appreciation night.
It is a hard decision to make. I was pleased C could still do thumbs up so it was his decision. C said no for over a year when the hospice wanted him to have one so hopefully your guy will still be able to make the decision when it becomes really necessary. I always said yes or no, it will be C's decision.
I have also gained so much from reading posts here and everyone who has posted I'm sure have helped someone.
If the doctor is not a locum it may be worth asking the surgery if Colin could be put on his list, always useful to have person who takes their time and is sympathetic. M has the rasping breathing and gurgling but not the temperature spikes though I have noticed her face flushes but no sign of higher temp. Seems to be getting worse while in the nursing home from their notes. Hope Colin settles..
Thanks Tim. We only have 4 doctors in our village surgery and they are all very human and approachable. Colin is the first PSP patient any of them have ever had so I think they have made themselves familiar. The three male doctors have all visited now. If our own GP isn't there, someone always comes when I ask. The first time I asked the receptionist for a home visit she tried to get me to take C to the surgery but I think there must be a note in his file as now, I'm never asked questions, it's just a yes, someone will call later after surgery.
Colin is much calmer now thanks. When C made the noise at the Hospice, they became very worried and said he was having a crisis. I expect the home is writing down every blip that you had probably got used to.
Last time C went to the hospice I gave him a kiss and told him to behave himself or he will send the staff into a panic (which they seemed to be when it happened there). One of the nurses laughed and said they don't panic but say, "Not on our watch please".
This sounds like most days for us!!!! It was actually quite comforting to read your letter-made me feel a bit less alone. Twice though when this has happened, we have ended up in hospital-all January in icu-terrible time, and dr said they could use all the equipment in the world and all the medicines, but if he didn't really want to fight to live, he would die-but he fought, and won, then 2 weeks ago back in hospital, just in the ward for 10 days -but are praying really hard that we will be going on the cruise we have paid for on 14 August-complete with nebuliser, suction, wheel chair, pads, jars of feed, spare peg just in case-and will wear the same clothes every second day as there is no room for clothes and who cares-we will never see the other passengers again!
Both times it was a minor infection that got to his chest.
I will also pray you get on that cruise. Where are you going? It is amazing that although diagnosed in 2010, C has never had a chest infection ( hope I haven't spoken too soon). He had an URTI once but it never got to his chest. The antibiotics did start his colitis off though, putting him on steroids for a year. We definitely don't want him to have any more infections. Here's hoping and praying.
NannaB, my husband makes that sound for long periods of time. I can hear him try to clear his throat, but he cannot. I am glad you posted about it because I thought it was something that only he was doing. My prayers are with you and C. Love, Deb
Thankfully Colin didn't need hospital admission and things have settled. What a lovely doctor and with a sense of humour, wish there were more of them. Take care, Nanny857 xx
I AM CONVINCED THIS IS THE CRUELEST DISEASE IN THE WORLD. TAKES ME HOURS TO GET HIM OUT OF BED IN THE MORNING, MUCH LESS DRESSED. I AM IN PAIN, FOR HIM AND FOR ME. LOOSING MY MIND, I AM THINKING.
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Kim's temp was going up and down and her neurologist (movement disorder specialist) told me it was because her body was shutting down. That was back in December 2015 and she's still with me, albeit a little worse month by month. We've had hospice involved for almost 7 months. I really think she's still with me because of all the prayers that have been lifted up for my sweetheart. I struggle with why God would allow this disease to exist, but I have faith that He has His reasons.
A Carer's Guilt
Hi guys my husband was diagnosed with psp three and a half years ago, about four or five years earlier he was showing symptoms. his legs
