Mikah_1

I'm new here. My mom was diagnosed two years ago this December with pap/ cbd. The doctors told me she's 3 1/2 years into this. I see my mom changing all the times. She was walking pretty good with her u-step and now I'm seeing her having difficulty walking. Her eyes bother her so much and I don't know what to do for her. She's choking more, she has problems sleeping some nights she sleeps good and some aren't good, her speech is getting slower and harder for her to talk.The doctors have told me now is the time for her to do what ever she wants before she can't. I don't know if I'm in denial but I don't understand what I'm up against? It tears me up to see my mom changing. I'm so use to us going shopping having our ice cream at thrifts before we come home. Going to the grand kids football games together, Christmas programs.. and now it takes so much out of her just to go to Walmart. I want my mom..... people tell me to enjoy everyday with her while I can, sometimes I don't know how to. My mom laughs a lot when she does off the wall stuff , She says she can't cry so she laughs, I cry... she's getting tired more easily and really doesn't care to watch tv too much. And I miss that. I hate this disease and what it's doing. I've read a lot of the post and a lot I feel so bad cause your loved ones are much more advanced then my mom but then I realize that it won't be long before I'm there too. My heart goes out to everyone who suffers from this horrible disease and for all the family and caregivers out there going through this with them. God bless us all and may his love grace and mercy be upon us all..

10 Replies

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  • Dear Mikah, I am so sorry that you and your mother are going through this. It's awful and terrifying and sad. One thing about this disease, though, is that you do have some time to hold on and love her, to show your love, to laugh with her. Try to make the most of the time you have. I know I'm saying what you've already heard, but it's true. And there are things you can do with her to help her and to make good memories. Does your mother do any speech or physical therapy? I enjoyed going to those appointments and then doing the exercises and playing word games with my sweetheart. (I really liked the LSVT Big exercises. There are videos online.) When he was in a wheelchair we enjoyed going for walks. We went to concerts some times. Does she like music? Any special food? Can you take her out for ice cream or just for a ride in the car?

    I know this is hard and it will get harder. If you are the person taking care of her there are lots of difficult practical decisions to be made. Meanwhile, laugh along with her as much as you can for now. The crying can wait.

    Love and peace, ec

  • Hi Eastermcedar, thank you for your kind words. yes my mom can still get out she just get tired really easily. she still loves her hamburgers and French Fries.I am having to thicken all her liquids now and take her crunchy goodies away. she gets mad and wants to eat them, we are having to adjust our lifestyles and its really hard. She just finished therapy, and we do exercises here at home, but she had a bad fall again so we had to stop until she gets better. I've never heard of the LSVT, I am going to have to look it up. She can still walk but its getting harder for her. The doctors sais to keep her moving that its very important so I'm trying to. But she is getting to where she just wants to stay in the room and lay down. I get very frustrated!! I am her caregiver and it is a very hard roll. I will take your advise laugh as much as I can. thank you again

  • Hi Micah, I'm new here too.

    I read your post and it was as I was reading a summary of my thoughts for the past years. My mom was diagnosed about 3 and a half years ago. I just found this association a week ago and wish I had looked sooner. It is a cruel disease, as much for the patient as it is for us, family. Her doctor told us "It's a mind trapped in a nonfunctional body"... Boy, that really hit me... I wish I could tell you that you're gonna have time to take it all in, but psp doesn't walk, it runs. When you start preparing for a new need it gets to a more difficult one; but you CAN get ready for what it's coming, by reading a lot about it and anticipating her future needs. Don't let depression get a hold on you guys, make a point of getting her a good laughing every day. As long as she can be happy, she'll be OK, you just need to adapt to new ways of doing things.

    I wish God be with you guys today and every day, holding your hand and giving you strength.

  • Well said, AnaBri. Good advice. Welcome to you, too.

  • Thank you easterncedar, I'm glad I found this site 😊

  • than you. I'm really glad I found this website to help me. cause I really felt alone.

  • Carry on eating those ice creams. One of our members use to say, that whilst ploughing through that ice cream, you have to concentrate on that moment, there are no, if's or but's, just pleasure!

    As for the rest, well..... I am afraid PSP is in charge of that, but you can take control. As Anabri says (welcome to you!) read everything you can. Try and anticipate what's next, sometimes you will even get it right. Acceptance is a huge key, the hardest, I know. Perhaps it's time to get a wheelchair, to take your Mum out in, so she doesn't get so tired. Also, as EC has said, physical and speech therapy does help, if only that you feel something positive is happening. It won't stop the PSP march, but it does keep those muscles working. The body does remain in full working order, its the messages from the brain that aren't getting through, that makes it seem as if it's not working.

    Most of all, stay on this site, we will help you through. Always someone around to give advice or lend a shoulder for you to cry on.

    One day at a time!

    Lots of love

    Anne

  • Welcome, Micah.

    Wish I could say something to cheer you up but I can't.

    Its normal and acceptable to cry as well as laugh together. We all do. And get angry.

    What you can't do is stop it. It is unpredictable and relentless.

    I always tell newcomers to make memories, photos, videos. Get a record of her voice.

    Having this site is incredibly supportive.

    love from Jean x

  • Keep using this site to get advice and emotional support it is invaluable. I took advise and got as many medics on board as possible and pressed for equipment needed for the next stage of this disease so that I didn't get stuck waiting for it the hospice gave been wonderful and not only care for the sufferer but also the carer as well. It is a struggle to get everyone on board and you do get fed up with the phone calls, medical visitors etc but its a necessary evil. Try to keep life as normal as possible for as long as possible and enjoy the laughs, tears and ice creams

    Love Kate xxx

  • PSP is a disease without pharmacological treatment. The only thing you can do is counteract the symptoms.

    In few words these are my experiences on PSP disease hoping they will be useful :

    My wife suffers from PSP. The first symptoms (difficulty speaking as if she had a stone in his mouth and a slight tremor in the ring finger) will be presented in March 2012. The definitive diagnosis was in June 2015 (Difficulty in eye movements).

    Palliative treatment of the disease is currently as follows:

    1) Avoid falls: transfer techniques, seat belt, wheelchairs, to adapt the bathroom, handrails on each side of the bed,articulated bed, wheelchair (type ETAC) special for hygiene and shower, etc.

    He has regularly used a wheelchair since June 2016.

    The wheelchair is made in aluminum and is foldable, easily transportable in the trunk of a car

    2) Prevent cold and flu (vaccine could be advisable) to avoid pneumonia.

    3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks. Relatively doughy food and solids in small pieces. Ice cream are well tolerated .

    4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): Go up and down 50 steps, walk 200-300 m, speech therapy exercises, exercises ocular muscles. After that he needs to rest at least 30 '

    5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc. After that he needs to take a rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks-gymnastics as well as socialize.

    The transport by car is adapted to take the patient and the wheelchair. Similar Citroen Picasso tall seats are recommended. .

    5) Palliative medication against depression and insomnia: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to food; 1 Lorazepan-1mg one hour before dinner.

    Drops of tear to the eyes upon request.

    If you have problems applying the drops "Optrex spray" is an alternative.

    We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends free. Those two persons help me a lot regularly and the children help whenever they can. Also the friends of always collaborate.

    Each patient seems to have similar symptoms but their appearance, intensity and sequence seems to be specific to each patient.

    Various medications have been tried for pain episodes. There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil in capsules and if the pain is acute Nolotil in glass ampoules. All under medical supervision.

    Our plan has been designed and adapted simultaneously by the neurologist and the family doctor. In the small occasional doubts or small urgencies we are guided by a relative who is a doctor.

    We found great help information In the comments of the members of this great association -HealthUnlocked- and also the web "CurePSP": psp.org/ has been of big help.

    Releasing the caregiver and allowing him / her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a patient of PSP is progressively taking charge of the work that did when the disease had not been shown, plus the work done by the patient of PSP, plus the management of the illness and the people who are forming the team of help. One must also look at how old is the caregiver is and his/her medical history.

    The bottom line is that jobs and occupations of the primary caregiver grow at the same time as age is going up ..... without an important help is very difficult to carry out without a brutal wear.

    From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregiver, far away from the PSP. At least, a week of holidays each six month is advisable.

    I hope and I wish these notes are useful.

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