Newly Diagnosed PSP

My sister, 57, is recently diagnosed with PSP. She was showing signs and symtopms since almost two years. At the same time she was going through some family issues so her initial symptoms were taken as depression by the doctors. She was treated for depression until recently when a neurologist confirmed the diagnoses. It is devastating. Her memory is fine. She speaks softly and tends to repeat. She randomly falls. Her gait is unusual and she cannot maintain balance. Her neck is stiff and her gaze is fixed. but she can move her eyes and neck on instructions. Her memory is fine and she can talk about just anything.

What stage of PSP is this? Does anyone know of any alternative treatment that can help slow down the progression?

I will appreciate any answer.

Thank you.

Ann

11 Replies

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  • So sorry, Ann, about your sister's diagnosis. As others will say, there is no standard progression for PSP. That makes it harder, but it can offer hope, as some patients never develop the most debilitating symptoms and some live and enjoy life for many years with the disease. If her memory is good, it is likely to stay that way. The only things I found to help were exercise routines and physical and speech therapy. Massage can help with stiffness. I am in the states, (where are you?) where insurance reimbursement for therapy is doled out stingily, but I pursued it all as much as I could. The exercise routine designed for Parkinson's patients, called LSVT Big kept my sweetheart walking longer than he would have otherwise.

    Check out Christine47's past posts. She has some good information and advice about diet and alternative treatments.

    It is a very shocking diagnosis, I know, but there are ways to help. Finding this community saved me in so many ways. It's good you found us.

    Best wishes, love and peace, Easterncedar

  • Sounds like she is in year 3 to 4. Unfortunately the worst is yet to come. Swallowing will become the biggest problem. As she eats and drinks, you'll notice it takes longer, she will choke and cough more often, her eyes and nose will run, and she'll have more bouts of pneumonia should she aspirate anything into her lungs. And if she's like my wife, this is about the time she becomes incontinent and will have difficulty holding her urine as well as emptying her bladder. This often leads to UTI's. And these symptoms often can be misleading and be overlooked. They even make you think she has pneumonia, as it also causes an increase in body temp and heart rate.

    The falls will become more frequent and can be very dangerous. She needs to be using a U-step weighted walker or she may even be getting to point of being wheel-chair bound. T

    I'm sorry to say, but there really is nothing that slows this beast of a disease down.

    My wife had a PEG feeding tube inserted and it sustained her during her last 2 years of life, otherwise I would have lost her much sooner. I learned how to quickly and safely catheterize her and would occasionally insert a Foley catheter whenever we traveled.

    We tried a couple clinical trials which unfortunately were failures. There is one active trial underway which is showing promise (ABBV-8E12)

    Here's a link to the trial site: clinicaltrials.gov/ct2/show...

    Best wishes to you and your sister,

    Ketchupman

  • Hi Ab¡nn:

    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).

    In my opinion, as long as possible, the best place for a patient PSP is their home. This entails the need for assistants to help the main caregiver and to be able to cope with the considerable expenses that this generates. It also demands a reasonable good health of the caregiver since the management of all the tasks that it carries with it produces a remarkable wear.

    The non-strictly medical parameters that the main caregiver must manage:

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

    She has regularly used a wheelchair since June 2016 (Four years after first symptom) . 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) Control of palliative medication against depression and insomnia. In our case right now: 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 bottom line is that jobs and occupations of the main 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.

    Although each person with PSP has a different evolution

    , given my experience, I would say that your sister is approximately at 35%-40% of the disease.

    I hope and I wish these notes are useful.

  • Thank you for your detailed reply. I really appreciate it. I'm sure your notes will help us plan a regimen for my sister. God is testing us, all of us who have a psp patient to look after.

    I will bother you again if I need to ask about anything else. Thank you again.

    Ann

  • So sorry that you have to go through this. Unfortunately there is no treatment. They usually try Parkinson's meds. That didn't help with my dad so we stopped it. It caused to many side effects. Although dad only live 9 months after his diagnosis I always kept quality of life in mind when making decisions. If there are side effects determine if the benefits of the med outweigh the side effects. Dad's case absolutely not. Trauma seems to progress the disease quite a bit. Dad was fine but having some falls. When he had hip replacement surgery after a fall he never walked again. Never took care of himself. Had to have 24 hour care. Then suffered a stroke and never recovered and passed a couple weeks after. Everyone is different in the progression. There is a lot of advise and support with this group so stay in touch. Prayers for you both.

  • Thanks , Lucy. It means a lot to have people like you on the forum. It's so heartbreaking to helplessly see your loved ones deteriorate in front of your eyes. I wish I could do something. I wish a miracle happens. I just wish.

  • Hi Anne I found CBD oil is amazing. It's a cannabis oil without THT (the stuff that causes highs and psychosis) I would never have dreamed of using this however after reading the reviews I couldn't not give it a go. The down side is it's very expensive but it's totally legal in the U.K. If you want anymore info please let me know.

    Good luck with your and your sisters many fights ahead. You have made the best move by joining this forum.

    I only signed in around a month ago but have found it a massive help and support. The people here have more answers than any of the professionals I have met. They are compassionate whilst been straight to the point, very honest, kind, knowledgeable but most of all they are extremely supportive.

    I hope your sister is still in early stages but as I'm sure others will mention, there is no real knowing and many symptoms, some which might not happen. At a guesse I would say early stages

    Make sure you get all the help you can. Where abouts are you and what medical intervention have you had so far?

    Big hugs to you and your sister

    Kindest regards Sarah xx

  • Thank you so much for your reply and kind words, Sarah.

    I'm glad I joined this forum. It's so painful to look at my sister because I'd always seen her on her tip toes and she is now almost dependent. We don't allow her to be on her own because she tends to fall. (She still does) since there is no treatment available we are giving her allopathic medicines for symptoms control. I don't think any of them actually work. Along with that we are giving her homeopathic course of medicine prescribed by a practitioner. Organic coconut oil and turmeric twice a day is part of her supplements. We are trying everything that we think can help.

    I hope they are able to cure this horrible disease sooner than we all think.

    Xoxo

    Ann

  • Sarah,

    Sorry to trouble you - where did you get the CBD oil in the UK? I found a product called Medipen. Thanks

    Richard

  • No problem at all. It's from CBD brothers. I get the 30% one. Good luck and let me know how you get on.

    Kind regards Sarah

  • Sarah,

    Thanks for this. I will look on their website.

    Richard

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