My wife was diagnosed with PSP early this year. We live in the US Midwest (Omaha) where we are blessed with excellent health care facilities. As strong as the movement disorder cadre of physicians are here (particularly Parkinson's), we do not have anyone who specializes in PSP per se. We would like to know if anyone could refer a doctor or facility that is truly a PSP specialist to use as a second opinion, treatment strategist or just an information source. I know these are few and far between but we were hoping to find someone in the Midwest and if not the US. Can anyone help?
Rick Westcott
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Hello Rick; I'm so sorry to hear about your wife's diagnosis. I don't know the midwest area, but is there a teaching hospital affiliated with a university near you? I would think there would be a neurologist who understands FTD Disorders such as PSP, there.
On this site there is a participant named Robin Riddle (rriddle) She is the Director or Moderator of a website called ?Brain Network (I just tried to leave this page to go look for her/it and I got kicked out this reply - so sorry if I don't have the correct name). Robin posts academic news on the FTD Disorders front, so may know of any specialists near you. Just a thought.
Good luck with your journey. The people on this network are very caring and much more experienced than I am, so keep posting!
Thanks for the reply . It's not that we don't have teaching hospitals here. Some very good ones with robust neurologic groups as a matter of fact. While they could identify PSP from the symptoms, we received little in detailed knowledge of disease progression and how our end state timetable had been drastically moved up. I've learned more about PSP from this site than I have from our medical staff.
So I am looking for someone that lives and breathes PSP that is not diluted by tending to the 50 some odd variants of Parkinsonism.
I'll look up Robin. Again thanks for the reply and reference.
I can’t help with Omaha but there are specialists here in California. The big name at UCSF is Dr. Boxer. You might also check the CurePSP website. They are a great resource for us.
In short these are my experiences on PSP disease expecting they could be useful :
First: If physicians agree that there is suspicion of a Parkinson like neurological disease (PSP, CBD, etc.), then I suggest to start an intensive and systematic - gymnastic program as well as walking, up and down stairs, speech therapy, etc. as soon as possible, trying to slow down eventual muscle dysfunction.
Bearing in mind that Parkinsonian patients become significantly more fatigued (parallel to disease progression) for the same activities than those not sick, then they requires more frequent rest periods.
2017-12-16
So far PSP is a disease without pharmacological treatment yet. The only thing you can do is counteract the symptoms…....but, despite how hard this disease is for everyone it is possible achieve a reasonable quality of life, even interesting.
My wife suffers from PSP. The first specific symptoms show up in March 2012 : difficulty speaking as if she had a stone in her mouth and a slight tremor in the ring finger. The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was the specific symptom that added to the difficulty in speech and walking instability confirmed the PSP diagnosis). Dat scan between 2012 and 2015 did not confirm the suspicions about Parkinson's, PSP, CBE, etc.
In my opinion, as far as it is possible, the best place for a PSP patients is their own home. This entails the need for other assistants to help the main caregiver and the capacity to cope with the considerable expenses that this generates. It also demands a reasonable good health of the caregiver since the management of all tasks that it carries out with it produces a remarkable fatigue physical and psychic.
In principle, the limits I have set to send the patient to a nursing home are: dementia, very aggressive behaviour, the need to apply specialized medical care or if the patient´s needs became more complex and persistent tan it could hold up 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 serious falls that nobody related to PSP. A fall with serious consequences is usually accompanied by an enhancement of the symptoms and some decrease on the quality of life.
Avoid falls: Learn transfer techniques, use wheelchairs with seat belt and anti-bedsores cushion (our anti-bedsores cushion came from: JAY - Sunrise Medical Ltd brand.), make suitable the bathroom, set up handrails on each side of the bed, make use of an articulated bed, also use a plastic wheelchair (type ETAC) special for hygiene and shower, etc.
My wife has regularly used a wheelchair since June 2016 (Four years after the onset of the first symptom). The wheelchair is made in aluminum and is foldable, easily transportable in the car trunk (aluminum wheelchair is: Ergo Lite 2 from KARMA brand). Weight supported: 70 kilogram.
2) Prevent cold and flu to avoid eventual common pneumonia (pneumococcal). Vaccination for flu and pneumonia could be advisable.
3) Phlegm and choking. It is not a big problem that the patient swallows his phlegm.
For phlegm to be fluid it is important to drink fluids. Also helps steam boiling water with a few drops of Eucalyptus essence and a small spoonful of Vicks Vaporub with a towel covering head and bowl. (Olbas oil in U.K.)
In case of choking raise both arms at shoulder height, breathe only through the nose intensely, retain air a couple of seconds and then force the cough.
The physiotherapists have exercises to improve the cough response to choking.
4) Prevent solids or regular liquids from reaching the lungs to avoid eventual “aspiration pneumonia” (with falls this is another very important risk). Add thickeners to drinks (water, Aquarius orange or lemon, etc.); to drink it is advisable a plastic straw with the chin as near as possible to the chest. The food must be moderately doughy and in small pieces if solid. Mediterranean diet emphasizing on fruits (peeled fruit avoiding the presence of seeds) and vegetables. Fruit compotes in small pieces or better crushed using a hand blender. Ice cream are well tolerated.
5) 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 meters (even days), speech therapy exercises and exercises mouth and ocular muscles. Then she needs to rest at least 30 '.
We have seen that laughter and good hydration (moisturizers for skin and liquids by mouth) help to mantain in good shape the face muscles.
Without any scientific basis, only observation of few nearby neurological diseases PSP like, I have the impression that a specific program of intense gymnastics can slow down the disease progression in a significant way and is more effective the earlier the disease is detected.
6) Socialization. Almost every afternoon, social activity: cinema, city walk, show, museum, conference, meeting with grandchildren, snack with friends, parties, etc. After these events she needs to 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 travels by car must be adapted to transport the patient and the wheelchair. High seats similar to Citroen Picasso are advisable.
The difficulty to follow the cadence of a normal conversation, being treated as a child or being the object of a special attention for his/her 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 with PSP have normally very good times.
In the event of troubles to handle the food (spaghetti, salad, etc.) or in a restaurant with companion who are NOT relatives (for instance: former university colleagues, etc.) and due to the velocity in serving meals, it is very likely that a person with PSP needs help to avoid a severe delay and therefore an unconfortable situation. This can create feelings of humiliation. The next times we must try to select the type of food and attend meals in which the rhythm of the meals could be very flexible.
7) Control of palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to lunch time; 1 Lorazepan-1mg one hour before dinner. Of course all these drugs were prescribed by a physician.
Recently she pay close attention after dinner to a light TV show. Surprisingly this activity has significantly improved her relaxation and rest at night.
She have had some episodes of constipation that have been corrected by applying an intensive Mediterranean diet based in fruits and vegetables and helped by the drug "Duphalac" (an oral osmotic laxative).
Drops of artificial tears to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.
8) 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 from 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 indicated. Up to present time it is the best system we could find.
To say yes or not she uses now the fist and the thumb finger.
We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us. Those two persons help me a lot regularly and the children help whenever they can. Also we have some collaboration from the close friends.
All PSP patients seem 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 (magnesic metamizol) in capsules and if the pain is acute Nolotil in glass ampoules orally. All these treatments under medical supervision.
Our plan has been designed and adapted simultaneously by the neurologist and the family physician. In the few occasional doubts or small emergencies we are guided by physicians who are a relative or close friends of us.
We found great help information in the comments of the members of this great association -HealthUnlocked-. Also the web "CurePSP": psp.org/ is a big help.
Releasing the PSP 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 PSP patient is progressively taking additional tasks. To the personal previous work (when the disease had not been shown), must be added the work formerly done by the PSP patient, plus the management of the illness and the guidance of people who share the help team. A special and continous attention must be directed to the main caregiver and his/her medical history.
The bottom paragraphs are to remember that the main caregiver jobs and occupations grow at the same time as age..... without an important help is very difficult to carry out all these activities without suffer a severe wear down.
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 caregivers, far away from the PSP problems. At least, a week of holidays each six month is advisable.
If you give me an e-mail I can send a table edited by PSPCure that broadly presents in four stages the evolution of PSP disease. It's a "jpeg" document that I can not include in this chat.
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