G'Day Everyone

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G'Day Everyone

Postby Tom » Sun Aug 09, 2009 7:40 pm

My name is Tom, 59 years old, and I have just been diagnosed with PSP after originally been diagnosed with Parkinson's about 2 years ago. It is terrific to find this site to find out info re: PSP, as well as finding out that I'm not alone in having this disease.
My symptoms are 1. I have been falling over about 3-4 times a week. 2. My eyesight is becoming a lot worse - mostly having trouble with blurred vision & my eyes becoming fixed and hard to look down.
3. Great difficulty in getting out of bed and rolling over.
As you can see, my symptoms are nothing compared with so many others. My main worry is the trouble I will cause my wife, who is an absolute angel, within what appears to be a very short time.

Has anybody got any idea how long I have before I become a real burden on her?

Thank you for taking the time to read this.
Tom
 
Posts: 4
Joined: Sun Aug 09, 2009 7:06 pm
Location: Queensland Australia

Postby robertvalerie » Thu Sep 10, 2009 2:50 pm

Tom, I am just about to turn 57 and I am going through the same thing as you, your not alone however at times you feel as though you are.
I have the same questions as you, How long?????

Bob
I hope you have a good day
robertvalerie
 
Posts: 9
Joined: Thu Jul 23, 2009 1:43 pm
Location: Winnipeg Manitoba

Postby robertvalerie » Sat Sep 12, 2009 12:18 am

Tom, go grab your walking frame, a bottle of good beer, and punch a roo right in the kisser
I hope you have a good day
robertvalerie
 
Posts: 9
Joined: Thu Jul 23, 2009 1:43 pm
Location: Winnipeg Manitoba

Re; G'Day

Postby Tom » Mon Sep 14, 2009 6:08 pm

Thanks Bob ~ I have taken your advice and had a few beers but I will let the roo punching go, for the time being anyway.

Regards,
Tom
Tom
 
Posts: 4
Joined: Sun Aug 09, 2009 7:06 pm
Location: Queensland Australia

To Tom and Bob:

Postby Trisha » Thu Sep 24, 2009 5:33 pm

I am watching this disease take a tremendous toll on my mother, who every single day, goes to see my father (in hospital) at 8 am till 8 pm. She has not failed to be there everyday for the past 2 months (unless I relieve her). She wants to bring him home but knows she cannot care for him. He is in stage 4 and was first misdiagnosed nearly 4 years ago. He has many other medical issues at this stage. But I can tell you this - if you both have a healthy and loving relationship with your wives, you and your wives will know when the time is right. In the U.S. they have hospice care come to the home to help. Here in Ontario there is not much of anything. We can hire our own caregivers but that can become costly. Dad has been in hospital for just over two months after a fall that broke his hip. His symptoms are rapidly progressing. Dementia and agression are now surfacing among other medical issues. You are both younger than my father (he is 73) and can fight the good fight longer than him. So keep your spirits up and don't be ashamed to be with friends and family - they will be more of a comfort, help and inspiration for both you and your wife than you may realize at this time. My father is nearing the end (maybe a few more months at the rate he is progressing) but if there are any questions you may have that I may be able to shed even a little light on - I would be more than happy to. I still myself try and read the posts every day - even if it's just to know we are not alone.
Dad misdiagnosed for 2 years. Confirmed diagnosis January 2008.
Trisha
 
Posts: 4
Joined: Thu Sep 24, 2009 3:15 pm
Location: Windsor, Ontario, Canada

Dear Trisha

Postby Tom » Sat Sep 26, 2009 5:46 pm

Thank you for your reply & kind words of encouragement ~ every little bit helps, believe me.

There is one question you may be able to answer for me ~ I turned 60 years old on 25th and our eldest daughter took my wife & I on an overnight outing to a seafood funfest. We had a very long two days & I know that I overdid the drinking & walking around but I had a ball ~ anyway, my question is did your father ever become worse after overdoing it? The tireder I get, the worse my unsteadiness becomes ~ hence my falls increase. The main reason I ask is because we are going to drive interstate for about 7 hours each day for the next 2 days to visit our other 2 children for 2 weeks & I know that I will be tired out most days ~ but having a ball with our grandkids.

Thanks again for your time
Take care
Tom
Tom
 
Posts: 4
Joined: Sun Aug 09, 2009 7:06 pm
Location: Queensland Australia

Overdoing it

Postby Trisha » Sun Sep 27, 2009 9:07 am

First of all Tom, I need to ask you - who is doing the driving? I am hoping your wife is. Due to your blurred vision and fixation I would highly suggest for you NOT to drive. I only say this with experience. Five years ago my father was in an accident (his fault) and at that time he did not notice these symptoms of fixation. But to answer your main question - absolutely! The more you overdue it, the more rest you will require. Try to keep within your limits (you and/or your wife will know what they are). Rest often and take naps if needed. Your body will require more and more rest as you progress. I have noticed a slight pattern with my father over the years - if he overdoes it and does not rest - the next few days he is nearly completely out-of-it. He is now in the final stage and needs an enormous amount of sleep. Basically his waking hours are maybe 8 hours per day. (with tiny naps while in his wheelchair). Please keep doing all the things that make you and your wife happy as long as you are able. I think it is wonderful that you are going to be with your family for two weeks. If you haven't explained the disease to them, please do, they will want to know. Have a wonderful time and overdue it a little but make sure you have time to rest and nap. But most of all enjoy! (P.S. - Happy Birthday)
Dad misdiagnosed for 2 years. Confirmed diagnosis January 2008.
Trisha
 
Posts: 4
Joined: Thu Sep 24, 2009 3:15 pm
Location: Windsor, Ontario, Canada

Postby Tom » Sun Sep 27, 2009 3:54 pm

Hi Trisha,
Thanks for your speedy reply. No, my wife is doing all the driving as I handed my license in some two months ago on the advice of my neurologist ~ as time goes on, hopefully it will become less of a nuisance.
It's interesting that your father spends a lot of time resting ~ at the moment my sleep patterns haven't really changed ~ I usually get about 6 hours sleep a night and this seems enough ~ except for the last couple of nights that is ~ but I did very little walking yesterday and feel much better this morning. I am certainly not looking forward to spending a lot more time in bed ~ as it is I wake up quite sore due to mot rolling over during the night. So it looks like that's the answer ~ everything in moderation hey!
Well, we're off now & I'll try to get on the internet while we're away but if not I'll be in touch in about two weeks.
Thanks again & take care,
Tom
Tom
 
Posts: 4
Joined: Sun Aug 09, 2009 7:06 pm
Location: Queensland Australia


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