physical therapy and CJD

[Guest guest]

Dear Debbie:

I have been composing this letter in my head for the better part of

the day and still have not decided the best approach. I guess I will

just " type " and see how it goes.

Rehabilitation services of which physical therapy is a part of,

vary depending on the stage (if there are any that are delinated), how

rapid the deteriation occurs and whether or not there are any measurable

or functional goals that can be attained. What they provide is a

" skill " service that nursing, aides, or a family member cannot not do.

This is what makes it billable for insurances.

Other rehabilitation services inaddition to Physical Therapy (PT)

are Occupational Therapy (OT), Speach Therapy (ST) and there is also

Recreational Therapy (RT) which the nursing home usually provides but it

not billable under Medicare.

I will try to outline various services but will use the above

abreviations.

Upon admission to a nursing home, the team usually takes 7 to 10

days to assess the person which if there is medicare coverage available,

it could be used to cover this portion of the stay and services.

PT would assess range of motion of all 4 limbs including neck and

back muscles (many a PT are acused(SP?) of being frustrated M.D.'s

without the full training), strength, endurance, coordination, transfers

(ability to arise from a chair, sit, on/off bed, etc), bed mobility, and

naturally how the person ambulates and whether or not an assistive

device (ie. quad cane, regular cane, walker with or without wheels,

personal assist etc.) is realistic and safe. They also can recommend

various types of positioning and devices for the bed, wheelchair or

gerichair that the person will be using. PT's are also liscensed to use

various modalities i.e. whirlpool, ultrasound, hot packs, electric stim,

parafin etc. But in the majority of cases these are NOT appropriate for

CJD cases. PT's can instruct nursing (including aides), proper

techniques in ambulation and transfers that would best benifit the

person. Once nursing has been instructed and there are no functional

goals, it now becomes custodial care.

OT evaluates range of motion, strentgh coordination both gross and

fine of the upper extremities, plus cognitive function, perceptual and

activities of daily living. The latter includes abilities to bath,

dress, manage personal hygiene, feef self, cut meat, write, sensory

stimulation and basicly care for themselves. (In another setting this

may be extended to include kitchen, laundry, manage own meds, checkbook

etc.) Depending on ther individual's status, the OT might do splinting

to prevent deformities or injury to oneself. As many have mentioned a

roll in the hand - this can be given by nursing or even a properly

informed aide. This prevents further flexor contracture of the fingers

to the point where washing the hand is impossible. (I have even seen

severe cases where the finger nails have started to grow into the palm

causing many more problems. An OT can also instruct nursing, the family

and advise RT on various cognitive stimulation techniques, provide

suggestions and adaptive equiptment (built up utensil, sippy cups

etc.)for feeding and if there is anything that the individual can manage

of their own ADL's even if it is drying their upper torso off with a

towel, it is usually recommended. Carry over by the aides is difficult

even in the best of facilities mainly due to the staff ratio. OT's also

can assist in positioning to increase comfort and safety. Again, once

the individual reaches maxium potential, starts to deteriate, or becomes

custodual care because there are no functional goal any insurance that

is covering will stop.

ST's not only work on language skills which many people lose

quickly but also swallowing. They could work in conjuction with the OT

on feeding. Many may have heard of the term dysphagia - the inability

to swallow. This can change drasticly from day to day. The ST's

recommendation on the diet consistency i.e. soft, puree, use of

thickening agent etc. is important and usually does not need to WAIT for

the attending dr's ok.

RT's provided an important service. They do many recreational task

that could be tailored to CJD victims. Such as catching or throwing a

soft ball. Cognitive tasks such as sorting i.e. coins, by colors,

numbers, shapes, etc . Even rememberences such as listening to others

relate to what is was like during their childhood, the newness of the

telephone, light, inside plumbing etc. (all those things that we take

for granted) They could even consult with an OT on various ways to

downgrade or simplify a task. Music, various smells (how about pumpkin

pie?), sounds, different textures etc. can be a stimulus.

When the person is unable to move around themselves, it is

important as many of you know that they be turned frequently. This

helps to prevent pressure sores but assists in proper breathing, PT or

OT might have recommendations especially if the tone (how the muscles

feel, usually increase and tight) has changed. Several have described

" curling " up in a ball - this is a fetal position. My dad was in a

abnormal " fencer's position " that infants with neurological problems

sometimes exhibit.

I probably have given you more then what you have asked for.

Hope you can use some of this information and that I have not been too

technical.

Judy