PSP - Montreal, Quebec

I am indeed inspired after reading the many article on PSP and now know I am not alone - my husband was finally diagnosed with PSP in 2010-11 and we downsized due to numerous falls he had - initially I had no clue of this disease and it left me quite exhausted. Presently he is in a care facility which made it even more difficult for me to let it happen I was devastated - have now come to terms with this and realized as time went by I could not handle it - he has good care and I visit him almost every day and spend time with him - he lost his speech and presently stiffness has set in - he keeps his eyes shut a lot and we have a difficult time to get him to open them. He is lucky as his children are around him often - it sure is a terrible disease

my husband travelled often to Japan, China, Israel ,India and the States loved his crosswords and ofcourse politics and now to see him like this is unbelievable . He eats well, and does have problems with swallowing/choking - he is now not able to walk much due to his stiffness so from the chair to the bed - I did try lately to lift him and had to call the nurse to help me and was scolded for trying. I pray the Lord will keep me strong and that as time goes by eases my husbands pain and suffering, meantime trying to enjoy the sunshine before the winter sets in.

presently he has UTI and is on antibiotics. So help me along the journey,

[Yvonneandgeorge]

It is so sad this illness, we are all worn out. A lot of people are talking about care homes, because it is getting so hard to manage.

My husband was diagnosed in 2014, but we think he has had PSP for the last 5-6 years, he can't walk much, he is in the wheelchair most of the time.

You will find this site full of lovely people, always ready with kind words, and we all know what each of us are going through.

It has rained here for the last 4 days, I think our summer has gone, look after yourself. Love and best wishes. Yvonne xxxx

[NannaB in reply to Yvonneandgeorge]

Shhhhh! I'm talking very quietly but the sun came out about an hour ago and as it is setting, the few clouds are now red. Here's hoping.

X

[Hidden in reply to Yvonneandgeorge]

Thanks so much Yvonne it is so refreshing to know there are others too in this situation - I am still in guilt that my husband is in a care facility

it did take a while for the right diagnosis - if I knew what I know now I may have handled the situation differently.

Thank you for your kind words of assurance.

1009 luck

[Heady]

Hindsight is a wonderful thing, but no decisions can ever be based on it. You can only EVER do what you think is right at the time, with the knowledge you have! We will ALL get to a place where we can longer care for our loved ones. Please don't beat yourself up, be proud for the things you have done for your husband. For the care you managed to give him, even for having the courage to place him in a care home, where you know he will be safe and cared for.

Lots of love

Heady

[Hidden in reply to Heady]

It is encouraging to read what you wrote - thanks so much for your words

of wisdom - it sure helps as we move on this journey.

Much appreciated

God Bless

1009luck

[KatherineParr]

Hello 1009

So hard, it really is. My husband, like yours, travelled a lot and read a lot. His being unable to read was devastating for him. He did not like the light and liked his curtains pulled to, and that might be why your husband keeps his eyes shut.

Perhaps if you read to him, or stay with him and get talking books or tune in to a good radio station with interesting programmes (we liked Britain's BBC4). At least he can listen and will perhaps give him some comfort. He probably won't be able to use a device, but even just sitting with him and listening is good for both of you.

I hope this helps. Take of yourself, and love to you both.

[Hidden in reply to KatherineParr]

Hi Katherine,

It sure is amazing and coincidental how similar the situation was likewise I did not realize at that time how light affected him and also his reading yes we do have the BBC news and CNN for him when he seems alert. I do spend time with him almost every day along with my kids and also with private nurses. Thanking you for sharing and your words of comfort.

God Bless

1009luck

[peterjones]

1009 luck hi mate well we can certainly do that matey is help you along your journey be it long or short you have us here to give you support I know its not the same as family but we are like a family all tied together with a common bond I to have psp matey but I am not so advanced as others on here but I have lots of falls and recently my legs have started to stiffen a little also my swallowing is not that great and my voice is going also my eyes are playing me up but I will not let this psp beat me but I can still walk around the place and go shopping yuk

good god I sound as if im ready for the dump don't I but I don't feel like it yet well mate I will say goodnight to you take care see yer peter jones queensland Australia psp sufferer

[Doglinton]

It is indeed devastating to watch your loved one disappear. What distresses me so much is suspecting that he is still there behind a screen and can't reach me.

I can only say we do our best with what life throws at us.

C can read a kindle as the letters can be magnified and greatly enjoys his classical music.

love, Jean x

[ketchupman]

Amazing how many people I hear that were diagnosed with PSP in 2010. My wife was diagnosed with typical Parkinson's in 2010, but a year later she was correctly diagnosed with PSP. I plan to keep her home in my care until the bitter end, but I can totally support you in the need to put your husband in a facility. If our situation was reversed, there is no way my wife could of handled me (I'm a 6'2" guy weighing 205 pounds ... I did weigh 285 about 10 months ago, but I knew I had to take better care of myself in order to take care of her, so I've been on a very low-carb diet and I work out every day in the early mornings while she is still asleep). God bless you and your family. Stay strong. God will see you through this.

[peterjones]

GOOD ON YER KECHUPMAN YOUR DOING A GOOD JOB TO BY THE SOUND OF THINGS MATE SEE YER TAKE CARE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER