I have previously posted and discussed my farthers condition over the last 12-24 months.
From my last update my farthers diagnosis changed from R/A PMR to Vasculitis responsible for Neuropathy secondary to R/A. The new treatment since then, Rituximab intrusion has seen a dramatic improvement in his health and well being to the point were he has now managed to drop from 12 - 10 pred in the last month without to much discomfort. Without disregarding issues with his eyes and foot (Nerve problem), he now lives an almost normal life and has even started to attend local council meetings this week (Not been done in nearly two years). He is supporting all of us with the grandchildren, and even manages some light DIY around the house!! To us this is a miracle compared to his lifestyle throughout the previous years and without being negative, we struggle to come to terms with the fact that this diagnosis was something we had questioned from day one. Our thoughts had been expressed to his original Rhummmy specialist and countless specialists during his time in hospital (All of whom stated vasculitis but would not stand up to the Rhummy who overruled during hospital admission). We now look back and wonder if they would have taken a biopsy earlier would the condition have presented its self and eliminated the miss treatment with some harsh medication that have definitely had an effect on his body!!
Advice please, good book!
Anyway, as we have said all along onwards and upwards, our next stage of treatment (Rituximab intrusion) is due in October and we hope this will have another positive effect on his condition and allow him to reduce his steroid even further During his bad times, I was advised on a good book to help him understand the pain (PMR) and ways to manage it, he digested this and it helped him get through the testing times for sure. As he likes to read, does anyone know of any good books on coming to terms mentally after such a battle with this condition, I believe this is something that we now work on to get him back how he was 2 years ago, as all of you may well know you can become short and snappy due to the medication taken I know physically he is getting better and our next challenge is his mental state.
As always, we could not have got though this without all your support and I intend to post a detailed summary in the hope that my farthers case and detail may help others in similar circumstances
One piece of advice that I will never forget and I believe drove my family and I more than anything, was never be afraid to question the specialists! if we hadn't he could still be misdiagnosed and on harmful drugs that can cause him damage
Many thanks Ryan
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Sonofjimmy
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Its on the agenda, we have discussed this and other instances along the line and how we should stand up and allow them to learn from it all. At the moment we are to busy getting back up and running we have not pulled anything together. You know at one stage four months before his last hospital admission, they were about to do a biopsy and talked my dad out of it because the Rhummy said it would have no benefit, overruling the professor in the hospital who had dealt with him and seen how poorly he was on admission !!
You are so lovely Ryan. I think you have some forgiving to do yourself. It is no use torturing ourselves with what might have been and the medical errors of judgement, it just ends up tearing you apart. Try to let your anger go, possibly speak to someone just for you. Forgive me if I am speaking out of turn.
It sounds like your father knows exactly what to do to improve his mental state, hence the Council meetings, the bits of DIY the engagement with his grandchildren etc.
I am concerned about what you are going to do, for yourself?
You don’t want to end up joining the PMR crew. A significant number of us battled impossible odds before we got this disease.
Wishing you and your lucky father the best of everything.
YOur Dad is so lucky to have you! I remember fighting my mum's corner for a pacemaker. Cutting a long story short when she went to thank consultant he said, 'Don't thank me, thank your daughter!' My response was, '....and what about all the elderly who do not have a son or daughter fighting for them?'
So pleased your Dad is improving. As Sheffield Jane says now you need to take care of yourself. PMR hit me the month after my Mum died.
Whilst we cope during a crisis, our bodies have a way of biting us back when we least expect it. So please take care.
Well done all of you. Regarding books, I don’t want to sound flippant but what about a damned good story or something to make him laugh? He deserves it. The healing process will happen, he obviously has the tenacity, and some of that is learning lightness again. Texts that help get over trauma are numerous and which ones help is very personal and difficult to predict. Healing comes from the most unexpected places!
So pleased to read of this positive outcome to what has been quite a difficult time for you all and over quite a long time. Your father seems as if he also is approaching life in a very positive way.
As said in another reply your Father sounds like an amazing resilient man , whose mental health related to his illness is still incredibly positive, and proved by his wish to instantly jump up and get on with all the things he had wanted to do while waiting for the right medical help.
I say , well done , to you too, and your family , you have clearly given him the sort of care , help and support, with the advice of friends on this site, that means he is ready to get on again.
My suggestion would be that if he loves reading , and is clearly ready for his new form of normality , perhaps a book that doesn't concentrate on his illness or being ill may be better for him right now. He will enjoy it and it will show him that you too have seen his improvement and are not only seeing sick Dad anymore , but Dad bouncing back, it will fill him with alot more positive mental energy.
So, a book on his interests, hobbies or favourite sport , or if related to conquering illness , a good biography on someone he likes and admires who has thrived despite medical odds.
If you want books later , with self help advice for doing more with less mobitilty , there are lots about related to arthritis , neurology and the heart that help you with exercise, diet and keeping positive.
I also agree with another chum, some of the most informative yet very amusing stories on coping with our illnesses come from members who regularly post their daily doings on here , so I would suggest if he doesn't like reading via a tablet and prefer paper instead, why not print out some of the funnies , keep them in a file and give them too him intermittently so he can keep up on their stories and be cheered up on a bad day too.
Yet again, you are amazing, your Dad is amazing and it is wonderful to hear a Family success story dealing with PMR like yours , you have written a positive story on dealing with PMR on here yourself, Thank you.
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