Oh boy, that was hard watching. Same hospital, same consultant, same waiting rooms. Not that I am bitter, if it works, but no wonder Steve's doctor had no time for him! We were told to go home and Google PSP by this guy. He managed to see Steve twice during his journey.
But my goodness, what progress. The things they are now able to do. Even if this doesn't work, they must be learning so much more about the brain, which has to lead to curing, or at least containing these horrible brain diseases. Let's hope so.
I will watch the next episode, if only to throw darts at the man I love to hate!!! Somebody will find the cure one day, so why not him. I wish them well.
Sending big hug and much love to everyone who is holding out for the big cure, it will happen, I just hope it will be soon to be able to help your loved one.
Lots of love
Anne
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Heady
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Anne I was thinking of you wondering which doctor Steve had. It was a really hard watch anyway but extra so for you.
You know for the first time since I heard the initials PSP and MSA I wondered if our loved ones were actually lucky not to endure Parkinson's. Some of them suffered so badly. Especially the man who ended up lying on the floor with his entire body shaking. I thank God that I never saw my husband like that. PSP and MSA are terrible conditions but for the first time ever I saw the reality of Parkinson's.
Maybe if this works they can treat PSP the same way? I think all those people who took part were so very brave. I cried for everyone of them. So very very sad?
I don't know Marie, Steve use to go to an exercise class for Parkinson's. The difference was huge, they all did everything they could to help him. It was hard for me as well. At least there was medication to help them, with some of their symptoms. But you are right, that guy's condition was heart breaking.
Anne did the hospital refer him to the exercise classes? We were told nothing and offered no help apart from carers 4 times a day. It felt like we were invisabile.
I still feel that way to be honest. It feels awful and not getting better either. How about you?
The physio referred us. Best thing that ever happened. The young lady who ran the classes became his personal trainer and came to the house twice a week. Still could get him walking, right up until the end. The only star in our journey.
Anne at least you had a physio. We had one from the Hospice who came and talked to us! When he went to his day at the Hospice he was walked around the room..a very small one! Apart from that nothing! I feel really angry that G wasn't given any help. Do you think when they hear PSP and MSA they think there is no point in doing anything? That's assuming they actually understand what those letters mean?
It was hard to watch.When that lovely Scottish lady said she wanted to be a wife,not a carer my heart bled.It is years now since I have felt anything other than a carer especially now he can barely talk and coughs all the time.If only there was hope.Crying now.It is early morning and I am already dreading the day.Now a deep breath and on we go.If I feel this sad,he must feel much worse .
I well remember that feeling of waking to face the day, everyday totally full-on barely time to take a breath. Sending much love and support for all of those nursing a loved one, it's a long arduous road but I'm glad I was able to see it through to the end as I know it's not always possible.
Sending big hugs. It was tough to watch even without a link to the hospital, doctors etc. I think the Neurology experiences you describe are sadly so common. My hubby”s Neurologist is a waste of space and basically monitors deterioration. But I know ask to see the junior docs who are much more thorough and open to suggestions!!!
True Tippy, I think some are too long in the tooth and have almost given up on taking new ideas onboard, not always the case but the younger doctors are more curious and enthusiastic, I suppose that it true in many fields but they don't necessarily have direct impact on people's lives. Hope you are managing to keep your chin up.
Tough wasn't it Yvonne, I know that our men didn't have the Parkinson's shaking symptoms but had a different set of other horrible symptoms to contend with and no help with medication. They are all shitty diseases at the end of the day, heartbreaking. Hope you are managing to get out a bit to face the world dear lady, hope to see you soon.
Rattling around a bit today Yvonne, can't settle to anything today maybe the change in weather as I like out in the garden. Going to cinema this evening with a lady who was a volunteer sitter for Ben and has become a friend. K xxx
It was seeing the waiting room that got me the hardest. I suppose we spent more time there, than anywhere else!!! A brand new hospital and we got the remains of the old part that nobody else wanted, with only the bare essentials in facilities.
Get what you're saying Anne, almost as if they want to sweep it under the carpet. Probably because they have no answers and research is so slow and arduous. My sister, who has rheumatoid arthritis had the same experience, treatment in the bowels the the old hospital with no natural light, had to spend a week on a drip there, stir crazy comes to mind.
Hi Heady, I missed it but after reading all the comments, I won’t be looking at it on catchup. On one hospital visit soon after diagnosis a man came out of the consultation room with a note to give to the receptionist. He was trying to hand it to her but his hand was shaking so much and he was gripping so tight it took a long time before he could let it go, all the time the sheet of paper flapping loudly. My darlings comment was, “ At least I haven’t got Parkinson’s so I’ll be able to hold a cup of tea”. Little did he know what was in store for him.
Thought it was the same hospital as Steve was connected too, it was hard watching for me but to have that extra familiarity must have touched a nerve Anne. A pretty gruelling trial to undertake but people are so desperate that they will try anything. A cruel cruel set of diseases.
The future sufferers of all these diseases will have these people to thank for their courage. I know it's not meant to be hereditary, but I would like to think that all our kids will get treatment and cured, if they need it.
The hardest part was seeing rooms that I never want to see again, knowing the long hours we spent in them, for what????
I pray that it is not hereditary, I already have a damaged bracca gene, hence my two breast cancers. One of my daughters has it too. I don’t want the PSP threat hanging over my children and grandchildren as well.
How are you keeping? I’m just into my second year of mourning . I spent the first year wanting to go too.
My family and friends are very supportive. I feel selfish feeling like this and try to appear positive.
I suppose when every second has been taken up as a carer for the last few years, we have lost our sense of purpose, as well the love of our life.
I think of you and your blanket when I too am curled up feeling glum.
It is good to know that there are people who really know what I went through and how I felt.
Me and my blanket are still good friends!!! Especially recently, second anniversary just gone by. I crashed, been diagnosed clinically depressed, so now on the happy pills. My life is moving forward, just hard to keep up mentally, sometimes.
It seems that just a few on here had/have a human being for a neurologist - the rest of us have to make do with what I can only describe as robots with the bedside manners of a bucket of frogs! On one occasion our guy was dictating the notes of our discussion to his secretary before we had even left the room. I always felt that we were completely written off from the moment of diagnosis, which we, like many, were told to go away and Google. It seems that if you have cancer you are treated with respect all through the journey, at least that's been the experience of several friends, so why is it so different for neurological diseases. It would have been R's birthday today, so flipping hard and I'm drying the tears ready to meet a friend for lunch, but to be honest no where near as hard as dealing with some of the medical profession and the anxieties of feeling 'dumped'. If this sounds bitter, I actually am not, because that would be a waste of energy, sometimes it's just good to say how you feel. Hope you are doing ok despite moments like last night's programme bringing so much flooding back. Best wishes, HilsandR.
My husband’s neurologist was very human and held a very calm Saturday morning clinic when most other clinics were closed so few people were milling around. At diagnosis he told us what to expect in the future and never menetioned the internet but of course we looked it up when we got home. He admitted that he could not help Colin other than trying a Parkinson’s drug which had no effect. After very few visits he said all he could do was note changes that had taken place since the last visit and make sure that the OT, speech therapist and other agencies were available to us when we needed them. He was very apologetic that there was no known cure and he suggested that as it was an effort getting Colin to the hospital, it wasn’t really worth the effort and if we didn’t want to go any more he would let the others involved know. He did say though that if we wanted to see him at any time in the future I just had to phone the number he gave me. On that last visit he said he wanted to speak to us about a sensitive subject but he was obliged to mention it. I asked him if it was about brain donation as Colin had already signed the forms. He was visibly relieved and said that was the easiest discussion he had ever had about donation.
Six years later Colin did donate his brain and I received an encouraging letter to say his donation will be used for many years to help find a cure.
Here’s hoping.
XxxX
I read about the procedure and how it was tried 15 years ago. Couldn’t be replicated at the time. Thought maybe they had improved it.
That was only part one we saw. Part two next week. They did a trial before which the doctor was convinced would be of benefit but because it needed a follow up the second trial was done in the US. That was a failure. However he was convinced it would work. He thought the delivery of the medication was the problem. So he worked on a new way of delivering the infusion directly into the brain. These people knew they could die but were so desperate they went for it. Some only got a placebo. We saw towards the end some people making progress and others trying to convince themselves they were. Next week we will see who got it and who didn't and I am sure they said those on the placebo were also given the infusion in the end which gives me hope for them.
I guess they have to monitor them for a few years afterwards? Amazing what they did and if it has worked an amazing step forward. Maybe for PSP too? Indeed for other neurological conditions also? I pray it works.
Happy belated birthday to you and happy birthday to Larry. You are an amazing man.
Thanks Marie. I had my gall bladder removed on Jan 3rd. This set me back , then I got one of those bugs that was going around. Altogether, it caused me to sink into depression again. Still, like incy wincy, I’m climbing the spout again, glad to have had such a lovely, kind and good man in my life for 50+ years. I keep reminding myself that we have to count our blessings. It does help, even though it makes me cry as well. .
I just watched this, with no knowledge or any of it, just what you had said. Wow, it’s hard watching, even though David never showed any of these types of Parinsonian aspects.
I felt so much for everyone involved, and when the chapeith the beard kisses his wife before his op, I just burst into tears.
I think maybe my heart will never be whole again. Any time I watch anything like this I end up in tears, yet somehow I know I have to watch them, if only In hope.
Well done to all of you who watched it. I'm afraid I ducked out, using the excuse it was too late (we are an hour ahead in Spain).
Can just about deal with stuff here....and then my brother in law, who lives half an hour away with my sister, was rushed into the local hospital with an enlarged heart. Unlike me, being a seasoned and adjusted carer, my sister is almost hospital phobic, so I have been taking up a lot of the slack at mealtimes. Poor Ian is spending more time on his own as a result, but at least he has a red button now! Hey ho! There is always a way through.....isn't there?!
Off to see our specialist on Thursday...first time since PSP diagnosis. Ought to write down questions for my translator sometime. Erm...where do I begin?
B. never had physio, apart for his new knee, which got infected, resulting in two more operations.
There were a lot of people came to show us how to manage the problems caused by PSP. At the end of their visit, EVERY one of them said to me, “You can do this with him” and never came again.
. After four years of trying to do it all, I snapped. When the next person came and said these words to me, after trying to change a routine that was working, I shouted, (raising my arms dramatically,) “ No! No! No! No!”. She and my husband looked at me as if I was mad.
I think I was.
Needless to say, she told me to carry on as I had been doing and never came back.
Let us hope that the next generation of neurologists and people who deal with diseases of the brain, are more aware and let us hope that there are more of them to deal with this ever increasing problem.
My best wishes and love go out to all my old friends here and also to those who are walking the path that we once trod. Rx
I think maybe they are slowly taking notice. I know someone with PSP, from our doctors surgery, has monthly home visits from his GP. They never came near Steve, so perhaps my daughter's letter of complaint was heard. We can only hope our screams were not in vain. I know I did enough.
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