Has anyone heard of this and would you recommend for Psp? Mum recently diagnosed. Thanks
Lifevac : Has anyone heard of this and would... - PSP Association
Lifevac
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Spanishv
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No sorry never heard of it x
Thanks for responding
I looked it up. Seems designed for situations in which an object is lodged in the airway. Is that right? I can't see how it would have helped us, but everyone is different, so can't say whether it might work for your mother, sorry.
Thank you for responding. I will ask the Parkinson’s nurse x
May be you should read this article found with Google typing LifeVac anti-choking system
Hi Spanishv
Welcome and sorry to hear about your situation.
I know nothing abut this device except to say it would be very low on my list of equipment, unless there were specific issues.
Have you got all of the basics in place?
OT, Physio recommended stuff? Care support?
Getting good support in early with a plan to increase it as needs is essential.
The high risk in PSP is not so much blocked airway as aspiration and this won't help that. Though it does look rather as good way to go for some difficulties.
Wishing you and your Mum the best.
Kevin
Hi Spanishv !
I am from Spanish Basque Country
Enclose my experience, I hope it can inspire some positive actions to you. In few words these are my experiences on PSP disease expecting they could be useful :
As I understand physicians agree that there is suspicion of a parkinsonian neurological disease (like PSP, CBD, etc.), I suggest to start an intensive systematic and 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 a Parkinsonian patient become significantly more fatigued for the same activities than those not sick (the more the more advanced the disease), then requires more frequent rest periods.
2017-12-10
So far PSP is a disease without pharmacological treatment yet. The only thing you can do is counteract the symptoms…....but, it is possible 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 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, 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.
A void falls: Learn transfer techniques, applied seat belt, use wheelchairs with anti-bedsores cushion (our anti-bedsores cushion came from: JAY from Sunrise Medical Ltd brand.), to 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).
2) Prevent cold and flu to avoid common pneumonia (pneumococo) (vaccination for flu and pneumonia could be advisable).
3) 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); to drink uit is advisable a plastic straw with the chin as near as possible to the chest. Relatively doughy food and solids in small pieces. Mediterranean diet emphasizing on fruits (peeled fruit) and vegetables. Fruit compotes in small pieces or mixed by mini-pymer. Ice cream are well tolerated.
It is not a big problem that the patient swallows his phlegm. For phlegm to be fluid it is important to drink fluids. In case of choking raise both arms at shoulder height, breathe only through the nose intensely, retain air a couple of seconds and force the cough.
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. Then she/he needs to rest at least 30 '.
To maintain in good shape the face muscles we have seen that laughter and good hydration (moisturizers for skin and liquids by mouth) offers good results.
Without any scientific basis, only observation of four nearby neurological patient cases, 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.
5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, meeting with grandchildren, snack with friends, parties, etc. After these events she/he 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 transport by car is adapted to take the patient and the wheelchair. High seats similar to Citroen Picasso is 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 colleagues of university, 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. In the future we will try to select the type of food and attend meals in which the rhythm of the meals could be 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 lunch time; 1 Lorazepan-1mg one hour before dinner. Of course all these drugs were prescribed by a physician.
Recently she pay attention to a light after dinner TV show in 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 in fruits and vegetables 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.
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 indicated. Up to present it is the best system I could find.
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. Those two persons help me a lot regularly and the children help whenever they can. Also we have the collaboration from the close friends.
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 (magnesic metamizol) in capsules and if the pain is acute Nolotil in glass ampoules orally. All under medical supervision.
Our plan has been designed and adapted simultaneously by the neurologist and the family doctor. In the few occasional doubts or small emergencies we are guided by a physician who is a relative of us.
We found great help information in the comments of the members of this great association -HealthUnlocked- and also the web "CurePSP": psp.org/ is 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 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 team of help. Special and continous attention must be directed to 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..... without an important help is very difficult to carry out all these activities without 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 caregiver, far away from the PSP problems. At least, a week of holidays each six month is advisable.
I hope and I wish these notes are useful.
