I am the primary caregiver for my 69 yr old wife. About 4 yr ago we saw initial symptoms in motor skills, speech and gait. Diagnosis went from movement disorder to Parkinson's to Parkinson's Plus to PSP almost a yr ago.
We are looking for info and support groups.
I am the primary caregiver for my 69 yr. old husband. You will find info and support right here. Everything the Dr. doesn't/can't really tell you - you will get from the front line. You can search any topic and valuable current and old threads will appear to guide you through. I wish you best. My husband and I do not live in sadness, we continue to move on with family and grandkids and staying busy!!!!
Thanks alicia.
So sorry you have to be here but an invaluable site with a great bunch of caring, sharing people. Stay posted. Jxx
I care for my husband who was diagnosed with PSP 14 months ago.
The neurologist suggested I looked at the PSP Association for information.
I received lots of information from them and telephone support.
It was suggested that we join a local PSPA Support and Friendship Group which we did. We live in Hertfordshire and the group meets every month. There are several members who are at various stages of this awful disease.
We share information and chat about any problems we have over a cup of tea and cake. It is worth contacting the PSP Assoc to find the nearest group to you as there are several around the country.
I also arranged for a referral to our local hospice the Hospice of St Francis. We have received a lot of support from them. I have also been on a Carers Course which they run. It was excellent and covered practcal advice, legal advice, what benefits are available and morale support.
Have joined this site and read it avidly for informations do have found it very useful and supportive.
Our GP practice had never heard about PSP so finding out about it has been an interesting exercise.
We take each day as it comes and enjoy our time together as much as we can
Brenda
Hi Rewestcott!
In few words these are my experiences on PSP disease hoping they will be useful :
If the doctors agree that it is a parkinsonian neurological disease (like PSP, CBD, etc.), I suggest to start an intensive gymnastics program as well as walking, up and down stairs, speech therapy, etc. as son as posible, to slow down muscle dysfunction.
Bearing in mind that the PSP patient become significantly more fatigued than a person not sick for the same activities, which requires more frequent rest periods.
2017-11-19
PSP is a disease without pharmacological treatment yet. The only thing you can do is counteract the symptoms…....but, you can achieve a reasonable quality of life, even interesting despite how hard this disease is for everyone.
My wife suffers from PSP. The first specific 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 physical and psychic.
In principle, the limit I have set to send the patient to a nursing home is dementia, the need to apply specialized medical care or the patient´s needs became more then you could do at home .
The non-strictly medical parameters that the main caregiver must manage:
1) Falls (From 2008 to 2016 my wife has fallen 11 times some of them serious. From 2008 until the first specific symptoms of PSP in 2012 she showed some instability and suffered two falls that nobody related to PSP).
Avoid falls: transfer techniques, seat belt, wheelchairs with anti-bedsores cushion (our anti-bedsores cushion is: JAY from Sunrise Medical Ltd brand.), 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 (aluminum wheelchair is: Ergo Lite 2 from KARMA brand).
2) Prevent cold and flu (vaccine could be advisable) to avoid common pneumonia (pneumococo).
3) Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia”. Add thickeners to drinks (water, Aquarius orange or lemon); to drink use a plastic straw and try he/she drink with the chin as near as possible to the chest. Relatively doughy food and solids in small pieces. Mediterranean diet insisting on fruits (peeled fruit) and vegetables. Fruit compotes in small pieces or passed by mini-pymer. 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): At least go up and down 50 steps (Odd days), walk 200-300 m (even days), speech therapy exercises and exercises ocular muscles. After that he needs to rest at least 30 '.
Without any scientific basis, only observation of four nearby neurological diseases cases, I have the impression that a specific program of intense gymnastics can slow down the disease in an important way and is more effective the earlier the disease is detected.
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.
The difficulty to follow the rhythm of a normal conversation, being treated as a child or being the object of attention for his illness and not for the person who is locked inside that jail that is the PSP, produces feelings of frustration and humiliation. You have to try to avoid those situations but keep attending social events because although usually resisting to get out of the routine at the end the person wiyh PSP have normally very good times.
In the event that the food is difficult to handle (spaghetti, salad, etc.) or it is a meal in a restaurant with people who are NOT from the family (former colleagues of university, etc.) and where the restaurant marks the rhythm when serving the meals, it is very likely that the person with PSP needs help to eat and thus not delay the rest too much. This can create feelings of humiliation. In the future we will try to select the type of food and attend meals in which the rhythm of the meals is very flexible.
6) 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.
She recently showed interest in a light TV show that he sees after dinner. Surprisingly this has significantly improved the relaxation and rest at night.
Drops of tear to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.
7) Communication: There are magnetic letters of scrable (20 x 20mm, if they are bigger, better). We put the letters of the alphabet in a metal tray (may be worth one of the oven) well illuminated and placed at eyes level. She is pointing the letters and another person is writing on a blackboard the letters that she points out. Until now it is the best system.
To say yes or not she uses head movements.
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 (falls). 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/ are a 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 the health of the main caregiver is and his/her medical history.
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.
I hope and I wish these notes are useful.
Thanks Luis, this is quite a lot to chew on. We have done extensive work on fall prevention as we had some dangerous ones. Also lots of voice exercises/programs such as LOUD and physical classes with the PD groups.
Rick
Great information. Well done! My husband has been living with this disease for around 12 years and I wholeheartedly agree with the excercise part. It has been a process with ups and downs and finding loving, caring and skillful help is essential. He lives at home and we find it is fa easier to manage than fighting for Care from people who don’t have the heart. We deal with the dementia and have learned various methods for keeping it under control. Thanks for sharing!
Hola Mtorres9235!
Gracias por sus palabras.
Estoy interesado en sus experiencias respecto a la demencia y la forma de mantenerla bajo control.
Abrazos y gracias.
Luis
Hello,
We have had many ups and downs and our experience with dealing with dimentia is dynamic. We use light therapy. Turning on light and off depending on mood. He loves music and has his favorite artists and tunes that we play continuously and we are trying cbd oil that has been recommended by his neurologist because any other medication we have tried makes him a zombie-like. He is very sensitive to Meds and find most of the time he gets worse with repetitive “I”ing with them. So soft soothing voices, music, light and small amount of regulated cbd oil is not perfect but helping us manage. Over the years we have tried different medicines. Haven’t worked. He is very sensitive to caring people and the love around him. He has always loved music and so playing his same special artists works for him to sooth him. It is not completely successful but find no one can do it better than we can at home. Sometimes, reverting to earplugs is necessary for sleep for caregivers with really bad episodes for caregivers sanity and sleep. But at the present we have gotten through that phase. I was so impressed with your blog. I appreciate your attention on detail explaining so many of the aspects of this disease. My husband has CBD( corticalbasil ganglionic degeneration). But many of the methods you have tried rang true for us as well. Thanks again for sharing. We have not found any real help managing the dementia outside the home, yet. Still open for suggestion but mostly I feel like the attention to the mood and temperament of what is happening in the person’s everyday life is what matters. I am the main caregiver and when it is important for me to find a balance managing his care. Finding skilled and caring individuals is key.
I just posted for the first time last night. I am the caregiver for my husband diagnosed with PSP at the first of the year after a Parkinson diagnoses a year earlier and symptoms for a couple of years prior. My responses are so kind and helpful as we endure this horrible disease. I am trying to take each day at a time and enjoy the little things that now are so precious.
Hello Rewestcott and Welcome!
I can't add much to the excellent responses from other members here. We are a far-flung family spread out across all the continents and we support each other no matter what. Sometimes we gripe together, sometimes grieve, and sometimes laugh!
We will help you get through this journey 
Anne G. (Vancouver, Canada)
Can anyone help/advise me? My dad was diagnosed with PSP 2 years ago we have seen a marked deterioration in his health since Christmas
Newly diagnosed - is this normal??
Frequent urination, every 20 minutes
Intro!
Living and dying with PSP
