My first Blog P.S.P

My name is Sandy And have been living with PSP for about 3 years now.I have had every test that you can emagine.to solve my problems. Falling back wards unable to walk with out help stopping in the middle of a room and cant move .When I see stairs it kind of freaks me out . But one thing I can say with the help of my husband and family I push on Yes I am scared of what is going to happen to me will I be able to play with the grand children hubbie has given up his job to look after me is this fair my life is in limbo the future is the unknown When people see me up comes the barrier I hide my feelings they think that its not that bad she has a few falls everyone fall some time in there life. But they dont relise how hard it is. .

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  • Hi Sandy

    My husband has PSP and although I found out the prognosis through the internet, he was never told, nor did he ask. We seek advice and treatment as each new symptom occurs. Like yourself, he freezes and can't move. A tip I picked up is to touch his feet .with my foot and this seems to get him moving again. I know its easy for me to say, but try not to dwell too much on what the future holds and take each day as it comes and try to make the most of it. I hope you find the strength to deal with this illness.

    with best wishes, gp1943

  • gp1943, My wife has PSP and she is aware of the diagnosis and implications from early on. However, I don't dwell on it with her, I don't talk to her about the finality of PSP, I don't talk to her about groups on-line (like this one) that I am participating in. Generally we don't discuss PSP at all unless she brings it up. I've read two books written by caregivers of PSP patients. She asked to read one of them but I told her I didn't know where it went. She hasn't asked again and I've hidden the book. Too much reality in the book for the PSP patient but excellent for the caregivers.

    You might try a laser for the freezing issue. I've heard that you point the laser at the spot in front of the patient you want them to step to and say "step here". It is a visual that helps them get moving.

    Jim P

  • Hi, Jim P, my husband has psp, and has probably had it around four years. I'm very interested in the books you have read. What's the name of the books I would like to read them. We talk about psp openly and hubby asked for nothing to be hidden from him. I take each day at a time, we laugh a lot, and take comfort and support from my lovely daughter who is a Doctor and in the future will be able to help others in the knowledge she is learning from her stepdad. Wishing you all the best take care Anne xxx

  • hi, i took your number when you phoned after the carlisle meeting, I know you were having builders in. I must have written it down incorrectly as I rang the other day and was told i had the wrong number. If you still have my number give me a call! Christine.

  • hi sandy

    welcome to the sitenad i hope you have joine dthe PSP assoc tooo

    i ahv e spsp too and was dxd in dec 2010 but am sitll here bloggign and gettign out hwen i cna

    i felll and brok my ankle 5 years ago - but i di dnto realis ei twa sth PSP

    my handwiritng had got compleltelyh illegible and i continue ot fall 4 / 6 times a day

    usuallyh fwd

    bu t to the right

    i freeze too particularlyh when having to turn to the irhg t or go thro a doorwayh or into a lif

    t#and tryh and stop and start again

    my eye sclos ea lto an di cannot wea r my contacts any more

    stgress makes all the symptoms worse

    i had neve rheard of psp and when i was dixd i googled it and got a social worker/.OT /speech hterapist and everyone who could help

    i have a carer comign in 14 horur s aweek and have just move dinto a groudn floor rapartment and

    got the LPA in place

    i am positive as i am pretty sure i have the slooow sort of PSP mentionied on this site by someone i n the USA

    and wish you welll

    keep on the site

    and

    keep smiling ;-)

    llol JIll

  • Hi Sandy - My name is Danielle and I cared for my father who had PSP for 10yrs. We have tried many things that worked and didn't work and learned lots of little tricks along the way. Please reach out anytime to this blog - you'll find caring people who just want to help make the lives of people with PSP better. Many of us can share our personal experiences and I'm sure many of the experiences and roads traveled will be able to help -you'll just have to try and see what works for you. This is not a place where you have to hide any feelings. You can rant and rave and we'll all still love you!

    I am in the states and don't know much about other care systems but joining the PSPA would definately be a good start if you are in the UK (someone correct me if I'm wrong). Please also let your hubbie know that this is place that he can too to ask questions (but he's not allowed to rant and rave - -hahaha just joking -he can do that too). The future will come when it comes - one day at a time! There are still good times to be had!

    You know, it might be a good idea to look into a "super pole" and/or install bars in the bathroom for you and where you think you might need them the most and maybe try a walking aid like a 4 pronged cane to help with balance so you don't fall so much.

    You are in my thoughts and I look forward to getting to know you and your family.

    Danielle

  • Hi Sandy - welcome to another blogger, It is a strange fact that we are all brought together with this PSP, and I think when we were first informed of its existence we were all left with this big question mark over our lives, i bet not one of us had ever heard of it before! I had safety rails installed for my husband and we managed for three years without extra care. He is now in a care home, struggles with his speech, still feeds himself but mobility is almost nil. I, like every one else here, feel full of pride for our loved ones who have this dreadful "disease" and from them WE get strength to continue our caring roll. Keep in touch - always a warm welcome here x

  • Hi Sandy,

    Welcome to the site! I'm sorry you are in the position where you need a site like this but very glad you've found it!! :-)

    You will always find someone to advise or support you and you can say anything you like!! Someone will generally have "been there, done that"!!

    The great thing about this site is that it helps you to realise that you are not alone.

    I hope you visit often! :-)

    love

    Kathy

  • Hi Sandy.....welcome. I'm glad you found this site as we are a little community. We all help each other whenever we can. As Kathy has said, one of us will likely have " been there, done that " so can offer advice or point you in the right direction. Joining the PSPA is priority if you haven't already as there is so much help & information for you. They are wonderful. Please tell your husband to come on site as well. I found it a godsend while I was caring for my husband.

    Take care & try to keep smiling. Love Hazel B xx

  • Thank you for your kind words I do go to P.S.P meeting in Australia and the house is set up well.. Peter bought me a ride on scooter so I can go shopping I did have a car but had a bad car accident over a year ago and smashed my right foot bad in rehab for 4 months in plaster 2 opps later still have trouble not aloud to drive any more so walking is hard.

    My hobbys are collecting tea pots and breeding cats {ragdolls} this keeps me active with the help peter gives me I can go to cats shows. he set up and comes back later to take me home. Peter knows Im safe he can have a few hours to him self.

    Please Take Care

    Sandyxx

  • Hi Sandy,

    You've come to the right place here. I recently found it and am so relieved that it is here for us. People are willing to brainstorm ideas and offer support just when you feel like you are at the end of your rope---that would be me sometimes!

    I care for my husband. He uses a heavy-duty walker, lift chair, wrap-around dark glasses, rails in the bathroom, and a urinal. There are still falls but a lot less now that we know what he has and are able to prepare for things. The problem is that just as you get one issue resolved a new one comes along. I agree with you that it is scary not to know what to expect, but as others have said here it's a one day at a time disease. Take care of yourself and enjoy your grandchildren. We try to be as involved with ours as we can, and they still make grandpa laugh.

    Oh, I also have a teapot collection (not much time to dust them these days, though)!

    RosemarieLynn

  • Hi Rosemarrie You have your hands full taking care of your husband it must be hard

    Do you have any help How is your husban copping can he go out at the moment I try and take care of myself but cooking and washing is done for me by hubbie and my daughter. How many tea pots do you have I cant remember when they last time I cleaned them its been awhile I also collect cats the children buy me a teapot or a cat for my birthdays All my freinds call me the cat lady as I breed them and collect them.

    Take care

    Sandy from Australia

  • Hi Kittens, Yes, I do have my hands full these days. My husband is my best friend so I try to get him out and about as much as we can. He uses ustep walker inside house and a cane with my arm when we go out----but it is getting more difficult for him. Glad you can still do so much for yourself. I don't have as many teapots (probably 20 or so) as I do cups/saucers. We used to love to go collecting together. No cats here now. Our little sweetie passed away when my husband started to get sick. We miss her lots.

    Take care, Rosemarie

  • Hi Sandy Welcome to this site I too have PSP diagnosed Dec 2011. You mention going to a meeting in Australia - where was that may I ask - I am from Perth W A & as far as I know there are no meetings here but in Vic there appear to be some. I have been a dog person for some years did obedience trialling with my poodles but now have an 12 year old adopted maltese x West highland white terrier a real sweetie.My husbands dog is 15 going on 16 next year also a sweetie. Keep in touch its late here 11.44 pm & I'm tired tonight as have had a busy week. Cheers Marytea13

  • Hi Marry the P.S..P I go to is in Melbourne they have come on board with Parkinson Aust. we meet every 2 mths you should give them a call they can help you if there is a PSP group near you I think there is a help group on line

    Marry we have a dog hes a british bull dog 20 mths old my daughter bought him back with her from qld. He is very pushie but i love him but my babies come first. At the moment I have 3 boys Martie is a new stud boy then theres A.J.hes our versectimise boy and theres chubbie he is not a ragdoll {silverexotic} and five girls zarah babe sangie zenya and pandoria I love them all

    I am glad that I started my blog there are so many people with P.S P I will keep in touch were abouts in Perth do you live hubbie and I went on a 3 year holiday around Australia we live in west for about 6mths loved it

    Take care Marry

    Sandy

  • Sandy, You are brave! Good that your hubbie is there to assist you. My wife has PSP with frequent falls (backward) also. She doesn't really have bad freezing when beginning to walk at the moment. I sent to the UK PSP group and they sent me some cards that are the size of a business card. On the back of those cards it gives a brief description of PSP. I gave one to friends from church and others because it explains what a PSP patient is having to go through. I feel the more people know about PSP the more they will support efforts to find a cure.

    Jim P aka Jimbo

  • Hi Jim thank you for your blog my husband doesnt say much about the P.SP I try to tell him how i feal but its hard. sometimes I think that Im holding him back We have been togehter since I was 16 yrs old now Im 59 and he is 60 and retired. he takes me out for long drives we stop at tea houses for afternoon tea. My walking is bad but with his help I manage At the moment we are doing up our kitchen I did a wood work course when I was in rehab after my car accident so i think I can help him. Sit down and ask your wife what she would like to do can she use a computor Im on face book and lots of sites This PSP is not going to stop me I have booked a cruise for my 60 th Birthday with my sisiter in 2013 she understands that i will need some help

    Take Care

    Sandy

  • Sandy, You are very brave and are taking on PSP wonderfully. Great idea to ask my wife what she would like. I know she mentioned travel and we have trips planned for August, September, and October (individual trips). She doesn't know it but I'm getting her a lap top computer for her birthday in August. That way she can do all the on-line things right from her chair. Our "normal" computer is not portable but a desk top model. Sharyn would love to do Ireland but her mobility is very poor and the fatigue is another problem. Only what I could see that as being possible would be to map out hotel stays and hire cars to get everywhere. I don't think she could manage going with a tour group. On our own she could do as much as possible at her own speed.

    Jimbo aka Jim P

  • hi

    r u gettign a laptop or an ipad

    an ipad hs hge app prologquetogo- v useful for th futurewhen speeech is a problem and you can get he rused to it earluy on

    o

    lol JIll

    :-)

  • Hi Jim Im glad that you are doing some trips what you have susgested Im sure Sharyn would be pleased to go .I have a lap top would go nuts with out it. Can Sharyn shop on her own I have 2 scooters one that folds down into the car and the other is a big scooter which can take me to the shopping center which is great. the only thing is that I have to tell my family that I be out for the day and which center I go to just in case something happens and they know where Im am I still have my independent which means alot to me.I better say good night the time is 12.43 am

    Take care

    Sandy from Australia

  • Kittens, Thanks for the response. Sharyn isn't very mobile I'm afraid. She does fine with a walker or wheelchair but not for any distance (walker). Do you have any special software on your PC that helps with speech?

    Jim P

  • Hi Jim I cant walk far either but I do use my scooter alot Sorry I cant help you with the speech soft ware please keep in touch

    Sandy

  • Hi every one just wont to know if any body is having trouble with their hands mine throb and starting to cross over each other the left hand is the main problem some times they stick and is painfull. And the other problem is I cant see through a screen door when I look through it makes me very dissey has this happened to any one .

    Sandy

  • Well done I liked your blog and also the gutsy way you are handling this horrid thng

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