Inclusion Body Myositis–Functional Rating Scale (IBM - FRS)

1. Swallowing

– 4 Normal

– 3 Early eating problems—occasional choking

– 2 Dietary consistency changes

– 1 Frequent choking

– 0 Needs tube feeding

2. Handwriting (with dominant hand prior to IBM onset)

– 4 Normal

– 3 Slow or sloppy; all words are legible

– 2 Not all words are legible

– 1 Able to grip pen but unable to write

– 0 unable to grip pen

 

3. Cutting food and handling utensils

– 4 Normal

– 3 Somewhat slow and clumsy, but no help needed

– 2 Can cut most foods, although clumsy and slow; some help needed

– 1 Food must be cut by someone, but can still feed slowly

– 0 Needs to be fed

4. Fine motor tasks (opening doors, using keys, picking up small objects)

– 4 Independent

– 3 Slow or clumsy in completing task

– 2 Independent but requires modified techniques or

assistive devices

– 1 Frequently requires assistance from caregiver

– 0 Unable

 

5. Dressing

– 4 Normal

– 3 Independent but with increased effort or decreased efficiency

– 2 Independent but requires assistive devices or modified techniques (Velcro snaps, shirts without buttons, etc)

– 1 Requires assistance from caregiver for some clothing items

– 0 total dependence

6. Hygiene (bathing and toileting)

– 4 Normal

– 3 Independent but with increased effort or decreased activity

– 2 Independent but requires use of assistive devices (shower chair, raised toilet seat, etc)

– 1 Requires occasional assistance from caregiver

– 0 Completely dependent

 

7. Turning in bed and adjusting covers

– 4 Normal

– 3 Somewhat slow and clumsy but no help needed

– 2 Can turn alone or adjust sheets, but with great difficulty

– 1 Can initiate, but not turn or adjust sheets alone

– 0 Unable or requires total assistance

 

8. Sit to stand

– 4 Independent (without use of arms)

– 3 Performs with substitute motions (leaning forward, rocking) but without use of arms

– 2 Requires use of arms

– 1 requires assistance from a device or person

– 0 Unable to stand

9. Walking

– 4 Normal

– 3 Slow or mild unsteadiness

– 2 Intermittent use of an assistive device (ankle–foot orthosis, cane, walker)

– 1 Dependent on assistive device

– 0 Wheelchair dependent

 

10. Climbing stairs

– 4 Normal

– 3 Slow with hesitation or increased effort; uses hand rail intermittently

– 2 Dependent on hand rail

– 1 Dependent on hand rail and additional support (cane or person)

– 0 Cannot climb stairs


This 10 point functional rating scale was developed by modifying
the ALS functional rating scale.  The highest score possible is 40, and the higher the score the better the person is functioning. Find out more about this rating scale.


 

About chronic disease: muscle weakness

Mother Combing Child's Hair painted 1879 by Mary Cassatt

I can longer brush my own hair with ease. It is a major effort which causes pain. I need someone to brush my knotted hair.

I can no longer cut the veges with ease. It is difficult and dangerous. I need someone to cut my health giving foods.

I can no longer hang the washing on the line with ease...

You get the idea? I could go on but I think you get the idea. I don't really want to whine on and complain. I know there are many people out there with worse problems than mine. It's just that I had a realization: How can I be a mother to my children if what I really need is a mother. How can I be a mother when I need a mother?

ACTIVITIES OF DAILY LIVING (ADL) CHECKLIST

The Checklist is provided to help you think of all the tasks you do and may need assistance with. This checklist is something you may find useful if you are starting to have difficulties with daily activities such as personal grooming like shaving or brushing your hair or preparing and cooking food.

I do have problems with these and like some of the suggestions:
Do you use or would you like to use adaptive devices to prepare meals?
For example:
• Rocker knife
• Mini-food processor/chopper
• Adapted spatula
• Color coded burners and knobs
• Digital timer
• Lightweight unbreakable bowls
• Lower work surfaces

This checklist is not only good to face facts and clarify these concerns for yourself but it may help your doctor, specialist or rehabilitation specialist of physiotherapist to understand where you are and how to offer help.
Keep in mind though it is not specific for Myositis.

http://www.oregon.gov/DHS/STEPS/docs/module1-handouts.pdf

If anyone does know of a checklist that is specific for muscle disease please let us know. Thanks.

Hydrotherapy and why it helps myositis

My twice weekly hydrotherapy lessons have been helping my myositis. I thought it was but this was not proved until I had to miss 12 days and started getting more tingling in my arms and legs, upper back pain and general aches and pains again.

I am no doctor or physiotherapist but I have asked the physiotherapists running the classes why hydrotherapy helps myositis and this is what they had to say...

My first ever post.

I have not been blogging very long but it was still interesting for me to go back and read my first post. Already since February 2011 I have forgotten to alternate activities as the pain specialist suggested. Maybe I am just doing it without thinking but I am not sure. It was a first for me to start this blog as I was letting the world know I had myositis - that was a big decision for me but I thought it was for the greater good: so someone else might understand a little about this condition and maybe it would help them get information that you don't find on medical sites.

Here is part of my first ever post:

Christmas myositis update

Everything is going smoothly. Hurrah!
I am going okay in the lead up to the great Christmas party at our house - over 20 guests.
This okayness is only due to large amounts of help from family. Thanks to my husband who shops and wraps gifts and has written most of the cards this year; to my teenage daughter who has come shopping with me for the hour here and there I can manage; to my sister in laws who are cooking the ham and turkey and pudding.

Wishing you a wonderful time
however and whatever you
celebrate.

I hate shopping

I never really use to love shopping, like some women do, but now I hate it because it causes me so much pain - the walking, the carrying of bags, the noise, the smells and the driving to get there.  I know I should shop online but I haven't quite got my head around that yet. Maybe this Christmas.
Help is a wonderful thing and knowing how to ask for it too. Now my husband helps by doing the food shopping I feel a great burden has been lifted from my shoulders - literally. It was the shoulders and arms that really ached for 2 days after food shopping.
The only thing I am sad about is my teenage daughter and her expectations of what other mothers do (take their daughters shopping) so about once a month I do take her shopping and we have morning tea and I just grit my teeth the next day, don't say anything and take extra pain meds.

I would love to know if you have any handy hints for making shopping for presents, clothes and food easier?

Myositis Awareness Day is September 21st

Myositis Awareness Day is this month.
The aim is to educate the public and healthcare community about myositis.

USA: The Myositis Association and its members worked to have the U.S. House of Representatives designate September 21st as National Myositis Awareness Day. This day has been recognized through a Congressional resolution to bring awareness and national attention to this disease.

"Myositis is thought to be an autoimmune disease and shares much in common with other autoimmune diseases like rheumatoid arthritis and lupus. Unlike these diseases, though, myositis is so rare that it often goes for weeks and months without a diagnosis, reducing the chances of a good outcome for new patients. There’s a form that has no known treatment, a form that affects children, a form that causes a painful rash and calcium deposits, and a form that’s accompanied by lung disease. What they have in common is a mysterious weakening of the muscles, appearing first as the inability to rise from a chair, hold your arms over your head, or get up from a fall.

Myositis patients rely on information provided by their specialists and The Myositis Association. The members of TMA plan events all over the country on September 21st to publicize this disease. We hope that increasing awareness will encourage early diagnosis, research and ultimately a cure." FROM TMA SAMPLE LETTER AVAILABLE for you to send to local elected officials.

AUSTRALIA: Myositis Awareness Day events information at The Myositis Association Australia Incorporated (Keep in Touch group)

Daily tasks with myositis

On Thursday, I did the food shopping. 3 days later and I am still in pain. My arms and shoulders feel like they have been lifting 20 kilo weights. Lifting, carrying,  packing, unpacking - I never realised how many tasks were involved in "doing the shopping".  I hate shopping.

The maze of diagnosis

Today I visited the Muscular Dystrophy Australia website as Myositis falls under this umbrella. I use to go on this site years ago and chat, to Ryan a young man with MD, as I thought that my condition was going to be in this general area - muscles that don't work.

"polymyositis is hard to diagnose and may be mistaken for muscular dystrophy." MDA

See here  for more explanation of all the diseases that come within Muscular Dystophy.

Once a dancer

This weekend I pottered around, mostly inside, tidying and sorting, sitting and standing.

When I went outside on the uneven ground I watched my steps very carefully.

I wondered about a cane and whether it would be more of a hindrance than a help at this stage and thought about youthfulness and the use and movement of the body and how the way we move has a big say in how we appear in relation to getting old.

 I quietly and momentarily grieved for the movement freedom of my youth and realised it was ironic that I should get this disease as I was, for many years, a dancer.