Have spent the last 3 hours reading all the blogs posted - I am amazed! For the last 7 years I have felt to be One of only a few people in the country caring for someone with PSP - my husband. In the early stages he was diagnosed with Parkinson's (for about 2yrs) and then diagnosed with PSP or as it was called then Parkinsons Plus! I was also able to continue teaching up until last July and maintain as normal a home as possible. Now though my husband's condition has deteriorated even though he is on a PSP trial. We will keep fighting the disease because I think it is the fight that keeps us going and because so little is known about PSP there could be a solution to it just around the corner. That is my hope anyway.
Written by
denmob
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I can understand your amazement, I think we all have felt as if it is just our family that is affected and then we come on here and find a whole community of people. It is an odd comfort to know that there are others experiencing the same kind of thing we are, and fighting the same battles. I hadn't heard anything about any drugs trials until joining this site and the thought that there might be a drug that can help does give a glimmer of hope.
We are all here to help each other, whether we are still struggling with PSP or CBD or have lost someone already to this dreadful condition. It really is nice isn't it to know we are among friends - almost family and that everyone here understands.
One of the biggest problems is that of isolation. Friends (and family) often stay away after a while. Not because they don't care, but because they can't cope with seeing their friend or loved one with this awful disease. Maybe it worries and scares them. Perhaps they have a dread, "This might happen to me!" - so they stay away.
By coming onto this website or The PSP Association forum page, we can all say what we think and feel and pour our hearts out. We are all here to listen and to help - if we can.
Thank u for your support. Now that I have finished work I am a little concerned about the future but I am lucky that my husband is still mobile - shakily - and able to eat reasonably well and speak (very quietly) Reading the blogs I count myself very lucky.
There is also a support group starting locally soon and I plan to go to the PSP conference this month. So thongns are happening.
Thank u for replying. I agree with you family does have difficulty with the condition. I told my husbands sister and brother12months ago, haven't heard from them since. Other members have said to give them a ring if we need anything. Your comments bring home that they are having to deal with PSP themselves.
All the best
Denmob
Hi Maggie
My husband like yours was diagnosed with Parkinsons for about 2 years. Our Neurologist, a kindly woman had serious doubts so she sent us to a famous clinic for Neurological disorders. There he was diagnosed with PSP. I don't know how long the PSP Internet has been an ongoing thing because I knew nothing about it until a few weeks ago. Unfortunately it is too late for me but I am so glad that it does exist because I felt so alone, no one had ever heard of PSP. This is a great way of sharing with people who have similar problems. A ray of hope.
Thank goodness for the Internet. My husband was initially diagnosed with depression, but his GP said she felt there was an underlying condition. His first referral via the NHS diagnosed a benign tremor and said he didn't need treatment. His condition continued to get worse and the GP referred him to a different neurologist (privately) and within weeks we had a diagnosis following a DaTscan. I immediately turned to the Internet and came across the PSP association and what a God send it has been especially the ability to blog with others in similar positions.
I feel fortunate with my husband when I read other blogs, in that he is still able to walk and when not stressed he talks a little, however reading the blogs makes me realize the importance of making the most of every good day. Such a day we had last week, when, as a family we enjoyed a good day out and psp was pushed to the back of our minds for a brief respite.
Not sure i have got the hang of this yet but here goes.
Thank u for your response. I have very mixed feelings all the time and on a daily basis; anger - why us etc. You probably have gone through them all yourself. This Sunday my youngest son goes off to uni and that is another concern because he has become something of a loner, using the Internet for a social Iife so I am concerned about how he will settle down. Who says there is only one sufferer in a family?
I have now finished teaching to look after my husband and seem now to have more time to sit and think in the evenings - no marking and planning now.
I am lucky that my husband can dress and care for himself, even after 7 years; he is also incredibly independent and determined. Now I will be able take him out in the car on a regular basis but I am not sure I will make a good full time carer. He is also able to talk but often chooses not to.
I have also got him on drug trials in brighton so we have regular trips there.it kind of gives u hope that something might come out of these trials and hope keeps us going.
It is lovely to hear your family trip went well. A good laugh and chuckle is always good for us.
Sorry, this was meant to be just a hello and thank you for your response.
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