Met my first PSP patient in person (other than my wife )

I briefly met a couple in San Francisco at the UCSF clinic from Minneapolis .The gentleman had PSP , they were in the lobby ...we spoke very briefly ..Because of his eye movement I knew he absolutely had PSP . To that couple I would like to ask them to contact me either personnal e-mail ...ozzy1990@aol.com or on this site .I have know idea if they attach themselves to this site or not ...but if they do please contact me ...my wife is about a yr or so further down "that road" then he was and his care-giver , wife, ?? seemed rather distraught ...We could not talk long because their ride was arriving to take them somewhere else . We are in denver , and this site offers to me a distant but effective route of information and venting ,but I would really like to try to see and interact with victims and caregivers of this disease . I think we could all benefit from that experience ...thank you ...jeff

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  • Yes, I have diagnosed people with PSP before, long before the doctors even thought of it! One of my pet angers, it's just Obvious, when someone has PSP! Like you say, it's the eyes that give it away. It's hardly rocket science, but then, when you hear of all the misdiagnosis, perhaps it is. Knew I went into the wrong profession!!!

    Hope you get in contact with these people, it makes such a difference, to actually see and meet someone else.

    Lots of love

    Anne

  • Were they in the same study as you? Perhaps you have the same Dr.? If so you might ask clinic or dr to ask the people to cal or email etc you. The dr cannot give out info but he can send your info where you want it to go...ie your new found friends....Good luck, and thank you for being so kind hearted and reaching out to someone who could use a friend like you!

    AVB

    But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self-control; against such things there is no law. Galatians 5:22-23

  • Love that Scripture.

    Althea 💛🙏

  • My husband was diagnosed with PSP in March 2017, I am finally in an emotional space to be able to reach out with posts to this site. We live near Portland, Oregon and I just discovered there are 2 support groups listed from the CurePSP website in the city. We plan to attend our first meeting tomorrow. Also, we went to a functional neurology clinic yesterday for the first time. A bit of good news was after his exam testing his eye movement response time she had him play a game using a light board which improved his response time notably after just 3 sessions of 30 seconds. (pressing the lighted button to turn it off as soon as he saw it) She was very happy and excited by his response as were we. She recommended an app called "Tynker" to download to either a tablet or iPad and will give us the computer code to simulate a program similar to the light board game that he can do at home. Hopefully the direct stimulation to an area of the brain that is degenerating will counteract the speed of progression. He has had issues with double vision for some time prior to his dx. Was closing one eye to drive, watch TV and read until we figured out there was something more significant going on than just needing more prism adjustment to his glasses prescription. Good luck finding others near you to form a personal support network. I have only met one person who actually knew what PSP is, her grandmother had that dx before she passed.

  • Welcome kandk

    I am glad you are feeling somewhat stronger.

    Waiving

    Kevin

  • Thanks for your message.

    Could you give me some more details about the Tynker app? I see it is a game for children to learn to program but I do not know how to find the "game of lights".

    Thank you.

  • I found the brand in Apps but got nowhere👍🏼

  • Hi, not sure if you are follwing this thread. I finally posted some code help for the Tynker app to Luis. Let me know if you need some help.

    Kathy

  • I will send a description of how to code the game in the Tynker app. I does not use lights but creates a character that moves randomly horizontally and vertically to visually track and touch the screen to activate.

  • Thanks.

    Best regards.

  • Hi Luis and Alicia , seems it has taken me a long time to get back to post this. I am a bit of a novice with my tablet and have been figuring out how to copy and paste the code info unsuccessfully. We are currently visiting our kids in El Salvador for our grandson's 3rd birthday and I am resorting to making this entry the long way!

    Open the tynker app, I selected student but I don't think it matters. Select projects, create new project. The screen opens to common codes to start dragging and dropping code pieces to the right side of the screen hooking them together like a puzzle. "On start", drag " when actor touched" over and drop at the lower edge of on start.

    At the top left there is a search field, type in the following segments individually then drag to the right to hook on.

    Go to (will bring up an x-y axis code line)which has some options to fill in. Move the whole line over to the right side.

    Pick random (drag that to the first blank to fill in on both the x and y portion)

    Screen right, screen left, screen top, screen bottom are all in the category with the symbol ((●)) at the bottom of the scroll list. Use right left to fill in the x axis and top bottom to fill in the y axis.

    I added a code line the doctor did not have "if on edge, bounce" because sometimes the character would barely be showing on the screen and my husband could not see it. Name your project and save it. Then make a duplicate with the same code and save it with a different name. There have been several times I have had to rebuild the program because instead of touching the start button he touched the actor and hit the trash can which deleted the actor. And I hadn't figured out how to add a new one...frustrating for both of us.

    Good luck, let me know if I can give more help.

    Best regards,

    Kathy

  • Thanks a lot Kathy.

    I shall try.

    Hug. Luis

  • Enzo501,

    We live in the state of Minnesota and South of Minneapolis. I am a caregiver to my 73 yr. old husband who was told he had PSP in March of 2016. We doctor at the VA hospital and clinic in Minneapolis as he is a Veteran. His symptoms started back in October of 2013 with eye problems. Lots of falls and injuries, eyesight is only 50%, uses a walker, totally depended on me for bathroom details, etc. He has been a good patient and knows his limits. He ended up in the hospital with a UTI and then 36 days in Nursing Home. He was not happy there but was given very good care and it gave me a good month of "vacation time" to get my life back to normal for even just a little while. He's home now with me and we start using Visiting Angels on Tuesday. I can see new symptoms of PSP showing up now and then. The one that scares me the most is his choking on food, air and just anything. There's nothing I can do for that but to let it take its course. I feel so bad for him.

    This site is wonderful, not only to rant and rave, but we benefit from the good information every morning when I open it up. I haven't found many PSP patients and caregivers who live in the states. Glad to hear you are from Denver. Take Care.

  • Johns65... My wife is 66 I am 68...there is for sure another couple in Minneapolis that I met in San Fran on Wed (last) with PSP. My wife was diagnosed in 2014...had it for a minimum of 2 yrs prior . No infections , several breaks from falls..wrist , shoulder and fingers ,not to mention bumps and bruises . Balance, speech, and choking are the big negatives...We have signed all the papers Green card w/ dnr , just make comfortable etc.....been married 46 yrs . She doesn't quite need a walker or chair with the exception of airports and long hauls. she cannot not walk alone ...so I am always with her ...every step ...I also do all the things you mentioned ...feed , bathe , get up , sit down .....We are participants in this drug study for PSP in SF and I hope she can do it for the entire 12 -13 months . Its a lot of work ..but could make it better for the next generation of this horrible disease. Thanks for reaching out ...lets stay in touch ...and of course I wish you and yours the best .....jeff

  • Good morning Jeff,

    The drug study sounds interesting. How long have you and your wife been in the study? Doctors told us there wasn't medication to help. We just have to help the PSP patient be comfortable and give them lots of hugs and love while trying to get through this crappy disease. My husband is Jim and I am Joyce and in his falls, he has never broken anything - yet - and I believe it is because he doesn't brace himself - just goes down. Last night we both took a tumble with him falling backwards hanging onto me and we were headed for the set of French glass doors. That was scary but I managed to hang onto him until I got my balance again. Jim doesn't have any pain with PSP. (so thankful for that) In many of his falls, he doesn't even realize he has been injured.

    I'll agree with you that it is a lot of work. I've managed by myself for a long time. It's getting so that we just eat, sleep and watch tv anymore. We just don't go anywhere anymore except for a drive in the country now and then. I am anxious for the Visiting Angels to come Tuesday. They told me that they have had experience with PSP patients before, so they are here in Southern Minnesota. I think there are more patients than we realize, just in our area. Hope you have a good day. I have to fix Jim's Lift Chair now.

  • Johns,

    Been in the study for about 2 months ..had our first infussion of an experimental drug last Thursday . A drug company (Abbvie) is sponsoring the study and UCSF univ cal @san fran..is administering it .It will last a year and there are 2 strengths of the drug and a placebo ...3 groups of infussors. Have our 4th trip there and our 2nd infuss on the 27th of sept. Thank you for wishing us luck ...It is hard on my wife ...travel is rough ...wheelchairs , plane rides ...etc .I wish you and your husband peace and love...jeff

  • Hi I wish I would of found this site early in the year because then I would of known what my Husband would be going through with PSP for you see Ben died in Jan 2017 after having dementia and Parkinson they said for 5 years then the 6 year that he died he was only diagnosed with PSP because of his eyes couldn't look up or down Ben in the end had swallowing issues he was bed bound a cather for 2 years and bowels didn't cooperate the last 10 months he had to go into nursing home but the month that he passed I brought him home with a bad infection in bladder He just gave up didn't eat for 10 days and quietly passed breathing was heavy this is a terrible disease Ben didn't have to go in advance stages of PSP I know someone did in Nursing Home very terrible was a vegetable Ben wouldn't of wanted us to see him this way I miss him dearly for you see I was his caretaker for 5 years with this disease I would walk with him actually hold him up as he walked falling came naturally for him I had alarms on many chairs for him to catch him as he got up In the end he talked with a slurr if this could help someone or caretaker let it be God Bless Carol Bens wife

  • Hi Enzo.

    Prevent solids or liquids from reaching the lungs. Add thickeners to drinks. Relatively doughy food and solids in small pieces.

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