Hello to everyone.My dad diagnosed with psp two days ago.He had many problems at the last 3 years.He often fell and his speech was getting strange,he started to talk hoarsely and he was not able to produce his own speech.At first the doctors told us he has depression and nothing else.So,about 2,5 to 3 years passed with my dad talking only antidepressants meds.His condition was getting worse and before few months a doctor told us that he has Parkinson.He also suggested that my dad should do full medical examinations.After these examination the final diagnosis is that he suffers from Parkinson and PSP.Currently he is taking meds for Parkinson.He has difficulty to stand up and walk,if someone is not behind him when he walks he falls,he talks rarely and when he talks his speech is not clear and he has difficulty in swallowing.I really don't know where to start.I read many posts and i understood that there are not many we can do.But,i would like to know everything that i can do for him,every help that i can give him.Even something that gives a small better difference in his condition would interested me very very much.I would be really grateful if you could give me any kind of help.Thank you very much and i wish courage to everyone that deals with this terrible disease.
My dad diagnosed with psp: Hello to everyone... - PSP Association
If you read back through the blogs you will find several tips about making things easier for your Dad, like having an alphabet or symbol board to help him to communicate, but truthfully the best thing you can do for your Dad is to continue to love him. Try and make sure he is safe but don't limit his independence. Talk to him and make every effort to understand him. Include him in the decisions you will need to make about his care. Inside the failing body your Dad is still there.
Get support for yourself and whoever else is caring for your Dad; get in touch with the PSP Nurse Specialists at pspeur.org if you are in the UK. Come back to this site and read the blogs, ask your questions, share your experiences. Find out what support is available for you and your Dad in your area and what you need to do to access it. Get a referral to a Speech and Language Therapist for help with swallowing and speech.
Learn what you can about PSP and be prepared to have to explain it to pretty much every professional you come across who will be involved in treating or caring for your Dad. Sadly too many of those in the health professions who are supposed to help have no idea what PSP is.
Take things one day at a time!
All the best you and your Dad
hmfsli,thank you very very much.It's really comforting to find out that there are people ready to help you.I live in Greece.I don't think we have PSP Nurses here,but as you mentioned, i 'll try to find out any kind of support that is available to my country.This community is trully very helpful,thanks again.
yes thsi website and the Parkinsons one is great for a coummuunity - we r all in this or have gone thro this
and have a great "spirit"
lol jill in the uk
hey - I'll give you a few tips that we did. Try and get some help for the necessary things when it is time - bathing, eating, dressing. Doing this every day gets exhausting and leaves you short tempered for the patience you need with speech. Someone that comes in every day for an hour or two can make all the difference.
Letter boards are great - also there are a few new laptop programs out there with word to speech recognition. Some are very expensive but there are a couple that can help.
Stay supportive and keep your dad in the loop about decisions. He's still in there and thinking, it just comes out a little slurred.
The disease is progressive - so take each new thing one day at a time - and work with it. If the falls get to the point where he's in danger - put him in a harness while seated. Be imaginative.
I have two flights of stairs in my house. I am tiny. To get my mom up the stairs we would play a little game. She'd sit on the bottom and we'd say something cute or interesting. Then I'd bump her up one step. The next step we'd think of something else clever to say. And so on. Finally, we'd get to the top, laughing. Then I'd run down and lug up her wheelchair. I look back on that now as some of the better times.
I wish you strength and prayers in this terrible time.
hi my husband was finally diagnosed 17th december 2011 and we lost him 22nd february 2012 he was such a brave man of 52 and took each day as it came my best advise to you is to make the most of every day and keep him safe and reassure him i used to see the fear in steves eyes steve had trouble talking swallowing coughing breathing he had such a high level of carbon dioxide on his lungs we were married just 7 months we met 4 years ago we were so happy tell have told steve for the last 18 months that it was depression at least he was diagnosed before leaving us it meant so much for me its a horrible disease as the days go by i miss him more and more bless him keep strong
Thank you very very much for your response.I am really sorry for your loss.I 'll try to to make the best for my dad,as you did for your husband.I wish you strength and courage and only good things for you in the future.
Hi John. Welcome to this blog. Many of us have been where you are and are very willing to help so post often. My dad had behavior changes dating back to 2002 and after many years of searching and misdiagnosis - my father was diagnosed with PSP in June of 2006 and dad just recieved his wings this past January -so I have about 10 yrs of PSP under my belt! Since your father is having trouble swallowing -it is probably time to start thickening his liquids. We used "thick it" because it did not change the taste of food or water. Sometimes using a straw can make things a little easier but you have to watch how much they take in (judgement is extremely impaired). We started out as "nectar" thick and moved on from there. There are also specialty plates and silverware that can help your dad feed himself. Also -making sure there is an extra swallow between bites will be important as well. Oral care is huge for PSP folks - we always swabbed, brushed and mouthwashed after anything went into my dad's mouth. You'll find that your dad will pocket food in the gums. Things to consider - grab bars in the bathroom - superpoles for by the bed or by his chair. Gait belts to aid in walking along with cane, walker, wheelchair - a lift chair to aid getting in and out of his chair. You'll find that your dad will lose the "sitting" control and just "plop" down - -you may want to consider getting a lifted toilet seat. Oh -and we used papaya enzymes to help with swallowing - papaya helps dry up secretions - -they are yummy and you can eat them like candy. - -Other important considerations are what about care? Who will be the power of attorney, what will be the care plan? Stay at home? If he's to stay home -how are you going to get care? Go to a care home? What "event" will put the care plan in motion? Feeding tube/no feeding tube? Does your dad want a DNR? Very difficult discussions to have but very necessary. I was my Dad's Power of Attorney and was with him when he made these decisons and whether i agreed with them or not - I carried out his wishes. He even elected not to have a feeding tube and then changed his mind but it is important to have these in place to help guide your family especially in times of crisis. I was so thankful we did this and I knew what he wanted.
Hi,dllera.Thanks a lot for so many important informations and tips about the disease.I 'll try to post often,it's a very helpful community with good people that really care about others.Except that,i believe that since it's a rare disease and not much are known about,sharing our experience will help finding improved ways to fight it.I think the most touching is that many people participating in this community have lost their beloved ones,but they are still willing to share the valuable knowledge they have about this terrible disease.I ordered thickener and the papaya enzymes and i ''ll check out the plates and silverware and all the other stuff that you mentioned.My dad's carer is my mother.My brother,my sister and i help as much as we can.My father had problems with depression in the past.Now, apart from Parkison and Psp,he has still depression,so we decided not to tell him about the Psp disease,at least not yet,we think that would made things worse.But we 'll get him involved in the decisions that we 'll take for him.I am so grateful for all your help.I wish you the best in your life.
Thanks John - also let me know if you are interested in the medications my dad used to help with his PSP symptoms. I'd be more than happy to share them with you.
Yes,dllera,i 'd be very interested in the medications that your dad used.Currently,my dad takes madopar and azilect.Before them he used stalevo.Once again,thanks a lot for your support,people in this community are so full of kindness.
Hi sorry to hear your dad has psp ,my wife has psp also aged 63.the balance and eye movement will be affected. sorry to say this the med for Parkinson he is taking will not work on psp and could produce serious side effects. psp affects the brain differently than parkinson disease, i will not put my wife on prescription drugs. the only one i used was amitriptyline 10mg i used it for 2 weeks and her swallowing got worse, so i stopped it .we use coconut oil in our coffee and tea and found it a great benefit. you have to be strong and believe in yourself. after 2 years my wife has balance problems but uses a walker which is weighted, she can only look left and right, her speech and swallowing in ok but feed her soft foods.i have spent hours researching anything that is relevant to psp disorder, keep reading the posts and be strong for your dad. Peter
A person with PSP does not move much and gets aching muscIes. I already had a book called "The Easy massage Workbook" And then I took a course in simple massaging. It seems to help a bit to feel better for she often asks me for for a massage.
Also when giving the medication I put the tablet on some jam or apple sauce on a teaspoon. Less choking.
If you live in Australia I can share what I learned this far.
This is my fourth year as a carer and I still sometimes think that I am going crazy.
Yes we all need a lot of courage and self esteem.