PSP: Progressive Supraneuclear Palsy

No… I do not think I have the diagnosis… But since a person in one of the online communities for pwp typed she just has her Diagnosis changed to PSP and the signs and symptoms overlap with other neurodegenerative diseases, I felt I should document it.

Research is now showing that all symptoms of neurodegeneration are likely linked by common pathology, so that research may eventually unlock the secrets of more common illnesses like Alzheimers and Parkinson’s

“Last month, a terrific article was published on progressive supranuclear palsy (PSP) in a nursing journal. The article shares a list of symptoms in the four stages of PSP from thePSP Association, based in the UK. The four stages are:

* early stage
* mid stage
* advanced stage
* end of life stage

The symptoms are copied below. I’m sure you can overlook the British spellings.”

Early stage:
May present via the fracture clinic, falls services, eye specialist or speech and language therapist. The early stage typically spans years 0-1.

> Ambulant.
> Occasional falls.
> Unsteadiness and poor balance.
> Possible visual problems affecting ability to read.
> Voice changes, for example reduced volume.
> Mood changes.
> Reduced socialising.
> Changes in mood and behaviour, including apathy and anxiety.

Mid stage:
Many people reach this stage before diagnosis. Consider discussing advance care planning and advance decisions to refuse treatment. Consider referral to palliative care services. The mid stage typically spans years 2-3.

> Ambulant with aids.
> High risk of falls and injury.
> Visual problems affecting self-care abilities, for example eating and walking as unable to move eyes to see.
> Speech increasingly unintelligible.
> Inability to initiate conversation.
> Impulsivity (risky or impulsive behaviour).
> Apathy.
> Dysphagia.
> High level of supervision required.
> Increasingly socially withdrawn.

Advanced stage:
Patients should be on GP palliative care register and have access to specialist palliative care.
The advanced stage typically spans years 3-6.

> Mobility significantly compromised, probably chair bound requiring a wheelchair for mobility.
> Significant visual problems.
> Significant muscle stiffness.
> Significant communication problems, but probably still able to understand.
> High risk of aspiration and pneumonia as a result of dysphagia.
> Pain.
> Increasing periods of sleepiness.
> Incontinence.
> Severely withdrawn socially.
> Dependent for most or all aspects of care.

End of life stage:
This stage is difficult to detect, but may be indicated by reduced levels of consciousness, inability to eat or drink, acute infection, a fall or major fracture, and rapid and significant weight loss. The end of life stage typically spans 6-8 weeks.

> Severe impairments and disabilities.
> Rapid and marked deterioration in condition.
> Decisions with regard to treatment interventions may be required, considering an individual’s previously expressed wishes (advance decisions to refuse treatment).TH

Routine Variations

When I first joined the community (probably 5 months ago) I posted my exercise goals for accountability. In January, I posted my routine in this blog as I described my Ruby Slippers and WBV routine. I inclued a photo of my ADMI Fitness exercise platform at that time.

I have altered my exercise routine. I appreciate having the bar across the front for gripping as I do 5 sets of twenty squats (100) and 5 sets of twenty knee lifts.. raising each knee high enough to tap my arms holding onto the bar. I took a note from the rocksteady boxing and exercise my voice… LOUD counting with each squat and each knee lift. Then I strive to pull my chin in and attempt to tuck my shoulder blades into the back pockets while doing the last three minutes of higher vibrations for freeing up sluggish lymph through out my system.

I thought you might like to see some of the benefits I found claimed on the internet sites of makers of whole body vibration platforms.

From ADMI Fitness

“How can ONE HOUR at the gym be compared to 10 MINUTES on the whole body vibration machine? Whole Body Vibration has the name for a reason! When your body engages 97% of muscles in the same exercise your results are accelerated. At the gym you spend your time on your different individual muscle groups. It would be incredible to see someone working his or her abs, arms, legs and calf’s at the same time at the gym! As wild as that picture is in your head Whole Body Vibration does exactly that and more. “

“Balance: About 30% of people over the age of 65 lose their balance and suffer a fall each year. Whole Body Vibration is an effective way to maintain or enhance skeletal mass in low-mobility individuals without the risks associated with high-impact exercise. WBV stimulates the primary endings of the muscle spindles, activating alpha-motor neurons resulting in muscle contractions. Studies have shown that WBV is associated with increases in lower limb muscle strength. WBV also delivers mechanical loading to the skeleton, which increases bone mass and improves postural balance by strengthening skeletal muscles. Balance and gait are improved by enhanced muscle control effected by routine WBV exercise. Strengthening skeletal muscles has a direct effect on coordination and balance “

‘ Parkinson’s: Researchers from Germany compared the effects of Whole Body Vibration and conventional physiotherapy on levodopa-resistant disturbances of balance and gait in idiopathic Parkinson’s Disease. Gait assessments and upper limb control tests showed significant improvements on gait stability and posture, a significant decrease in tremors and less rigidity in PD patients receiving whole body vibration therapy compared to a control group with no therapy ‘

” The Health Benefits of WBV-Training are many, and the reason for this is because WBV stimulation affects not only your musculature but also your internal organs and glands, including your brain”

Increase muscle strength, especially explosive strengthPain reduction (such as with fibromyalgia)
Increase hormone secretion: IGF-1, testosterone, and human growth hormone (HGH)Counteract age-related muscle wasting  
Increase fat loss; WBVT in conjunction with resistance training improved fat loss in menopausal women.8Other research9 found WBVT was 54 percent more effective than traditional aerobics and strength training in producing visceral fat loss.Those using WBVT were also less likely to gain the weight backReduce cellulite; 8 to 13 minutes of WBVT, two to three times per week for six months was shown to reduce cellulite by 26 percent. When combined with 24 to 48 minutes of cardio, cellulite was reduced by more than 32 percent10
Increase bone mass and mineral density, thereby decreasing risk of osteoporosisImprove in blood circulation, which can also stimulate tissue healing. Three minutes on a vibrating platform doubles mean circulation for at least 10 minutes11
Increase flexibility and mobilityIncrease secretion of serotonin and norepinephrine
Improve proprioception and balanceIncrease lymphatic drainage
Decrease cortisol levels  Speed up recovery from injury
Improve fitness in the elderlyImprove neurological conditions