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Peggy's ALS Functional Rating Scale


The ALS Functional Rating Scale on this page lets me know the fast steady decline of my body as a result of ALS.  I was
diagnosed in early March 2004 with ALS and started keeping my chart then.

The numbers only reflect the physical decline, and are not a reflection of mental health or quality of life.

2004                  Mar       Apr      May       Jun       Jul      Aug       Sept      Oct       Nov       Dec         

Speech.................4..........4..........4...........4..........4........4............4............4
Salivation..............4..........4..........4...........4..........4........4............4............4
Swallowing............4..........4..........4...........4..........4........4............4............4
Writing..................4..........4..........4...........4..........4........4............4............4
Food.....................4..........4..........4...........4..........4........4............4............4
Dressing................4..........4..........3+.........3+.......3+.......3+..........3............3
Bed.......................3+........3+........3+.........3+.......3+.......3+..........3-...........3-
Walking.................3+........3+.........3+........3.........3.........3-...........2+..........2+
Stairs....................3+........3+.........3+........3..........3........3.............3-..........3-
Breathing...............4..........4...........4..........3+........3+......3+...........3+.........3-

Total.....................43+........43+......38.........36+.....36+.....36...........34..........33
          
          
 *The Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS)
         
          
a. Speech              4     Normal speech processes        
                              3     Detectable speech disturbances        
                              2     Intelligible with repeating        
                              1     Speech combined with nonvocal        
                              0      Loss of useful speech        
          
b. Salivation             4      Normal        
                               3      Slight but definite excess of saliva in mouth        
                               2      Moderate saliva; minimal drooling          
                               1      Marked excess of saliva with some drooling        
                               0      Marked drooling; requires constant tissue        
          
c. Swallowing           4      Normal eating habits        
                               3      Early eating problems - occasional choking        
                               2      Dietary consistency changes        
                               1      Needs supplemental tube feeding        
                               0      NPO (exclusively parenteral or enteral        
          
d. Handwriting          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        
          
e. Cutting Food and Handlig Utensils (patients without gastrostomy-feeding tube)**          
                               4       Normal        
                               3       Slow & clumsy, but no help needed        
                               2       Cut most foods,clumsy & slow; help needed        
                               1       Food cut by someone, but can still feed slow       
                               0       Needs to be fed        
          
 **Cutting Food and Handling Utensils (alternate scale for patients with gastrostomy-feeding tube)         
          
                               4       Normal        
                               3       Clumsy but able to perform all manipulations        
                               2       Some help needed with closures & fasteners        
                               1       Provides minimal assistance to caregiver        
                               0       Unable to perform any aspect of task        
          
f. Dressing and Hygiene          
                               4       Normal Function        
                               3       Independent (effort of decreased efficiency)        
                               2       Intermittent assistance or substitute methods        
                               1       Needs attendant for self-care        
                               0       Total dependence        
          
g. Turning in Bed and Adjusting Bed Clothes          
                               4       Normal        
                               3       Slow and clumsy, but no help needed        
                               2       Can turn alone or adjust sheets, great effort        
                               1       Can initiate, but not adjust sheets alone        
                               0        Helpless        
          
h. Walking               4        Normal        
                               3        Early ambulation difficulties        
                               2        Walks with assistance        
                               1         Nonambulatory functional        
                               0         No purposeful leg movement        
          
i. Climbing Stairs          
                               4         Normal        
                               3         Slow        
                               2         Mild unsteadiness        
                               1         Needs assistance        
                               0         Cannot do        
          
j. Breathing              4         Normal        
                               3         Shortness of breath with minimal exertion      
                               2         Shortness of breath at rest        
                               1         Intermittent ventilatory assistance        
                               0         Ventilator
dependent        
          
 Cedarbaum J. Archives of Neurology. 1996 Feb 53(2):141-7         
          
*I can trace my symptoms back to 1995
**Noticed first serious neurological symptoms
***Officially diagnosed with ALS March 8, 2004
****Began Rilutek, Baclofen, Vitamin C, Vitamin E, Beta carotene,Melatonin and Coenzyme
          
          
          
 Peggy's ALS Functional Rating Scale (# out of 40)

                 2004.........2005.........2006.........2007.........2008.........2009.........2010
   
Jan............. 00
Feb.............00
March.........43+
April............43+
May.............38
June............36+
July..............36+
Aug..............36
Sept.............34
Oct..............33
Nov
Dec


OCCUPATIONAL SKILLS GRADING

July 9, 2004

Right Grip.....60.5 lbs. of Pressure
Left Grip......65 lbs. of Pressure
Right Pinch....16.5 lbs. of Pressure
Left Pinch.....16 lbs. of Pressure

I had to put these little pegs in the holes and then put a washer on each one and a cap on top of that. There were 25 pegs.
I had 60 seconds to complete each hand.

Right Hand....24 Pegs
Left Hand.....23 Pegs

I had to turn over the round blocks all from on color to another color. I had to do it with my right hand and then my left hand.
I had to see how many times I could turn them all over in 60 seconds.

Right Hand....64................60 Seconds
Left Hand.....64................60 Seconds

JULY 2004 PHYSICAL THERAPY GRADING

Lying Flat to Standing...................6.5 Seconds
Walking 20 feet unassisted..............13 Seconds
Cutting Hard Clay Putty/w Plastic Knife..7 Seconds
Rolling Manual Wheelchair 20'.......12 Seconds
Standing from sitting Position...........2 Seconds
4 Steps Up/Down with rails..............15 Seconds

When I was diagnosed in March 2004 and did the Pulmonary Test (blowing in the tube) I scored 104%.
It was predicted that I would do 80 to 85%.

At my first ALS Clinic in July, I scored 101% out of a predicted 75 to 80%.
My Weight in July was 145.5 lbs.


Hip Flexor..........Right 4- Left 4-
Knee Flexor.........Right 4 Left 4
Knee Extensor.......Right 4- Left 4
Ankle Flexor........Right 3 Left 3-
Ankle Extensor......Right 4 Left 4
Toe Flexor..........Right 4 Left 4-
Toe Extensor........Right 3+ Left 3+
Deltoids............Right 5- Left 4
BiCeps..............Right 4+ Left 4+
Triceps.............Right 4+ Left 4+
Wrist Flexors.......Right 5 Left 4+
Wrist Extensors.....Right 5- Left 5-
Finger Flexors......Right 5- Left 5-
Finger Extensors....Right 4+ Left 4+

I met a couple there, Andrew and Betty Councilman. They are real nice people from Jackson, AL.
Andrew is the one with ALS.


OCTOBER ALS CLINIC IN HOUSTON

Hip Flexor.........Right 4- Left 4
Knee Flexor........Right 4- Left 4+
Knee Extensor......Right 4 Left 4
Ankle Flexor.......Right 3 Left 4
Ankle Extensor.....Right 3 Left 4
Toe Flexor.........Right 3 Left 4-
Toe Extensor.......Right 3 Left 3+
Deltoids...........Right 5- Left 4
BiCeps.............Right 4+ Left 4+
Triceps............Right 4+ Left 4+
Wrist Flexors......Right 5 Left 4+
Wrist Extensors....Right 5- Left 5-
Finger Flexors.....Right 4+ Left 5-
Finger Extensors...Right 4+ Left 4+


OCTOBER OCCUPATIONAL THERAPY

TURNING THE BLOCKS OVER IN 60 SECONDS
Right................66 Left...............70

POUNDS OF PRESSURE
Grip.........Right 60 Left...............65
Pinch........Right 17 Left...............17

PEGS, WASHERS & CAPS IN 60 SECONDS
Right................21 Left...............26

OCTOBER PULMONARY TEST(Blowing in the tube)....105%

Lying Flat To Standing.....................5 Seconds
Walking 20'(I had to use a walker)........25 Seconds
Cutting Hard Clay Putty w/ Plastic Knife...4 Seconds
Rolling Manual Wheel Chair 20'............12 Seconds
Standing From Sitting Position...........1.5 Seconds
Stairs (4 Up/Down with Rails)............ 25 Seconds

WEIGHT....................................147.9 lBS.
TEMPERATURE................................97.4
BP........................................122/74
PULSE......................................72

I was given a prescription for Spiriva. This is an Inhaler to help me cough. Dr. Lai said I have Bronchitis and needed to be able to cough stuff up.

My Wheel Chair was delivered to me the day befor we went to Houston. The Sales slip said it cost 3,400 Dollars. It will do everything but steer by itself. Then, when we got to Clinic we talked to the Dynavox Communications Device man and he showed us a machine that will record my voice and sayings that I will need to communicate once I can no longer speak. Medicare will pay 80% and MDA will pay the rest. It cost 7,000 Dollars. I ordered one and am looking forward to getting it soon so that I can get use to it and get everything programmed into it before I can no longer speak.

I am no longer going to Houston. It is just too hard on me. It takes 2 days everytime we go and I have to sit in the Waiting Room all day long with my feet hanging down and by the time we get home my feet are swelled twice the normal size and the hurt real bad. We go in the motor home so the expenses aren't bad but it is still too hard on me. So, I got in towch with MDA and got an appointment with Dr. Swinderman at the clinic in Shreveport.

I had my first appointment January 26, and it went really well. It was my first time to see him and he spent about an hour with me, examining me and and talking to Curtis and me.

Communications with other people who
have ALS or might have it.


July 17, 2004

This is a lady that responded to my Website.

Hi Peggy,

My name is Jane Dillon from Homer, LA. I was diagnosed with ALS the first of this year. I was sent by my GP to Dr. Kim who said I had a "strong suspicion of ALS".. He sent me to Dr. Schwendimann who agreed. I had two blood tests, two MRIs and two EMGs. My symptoms were slurred speech and weak left hand. I'm on Rilutek, Prozak (to stop the crying for no reason), and still take my Estrace (hormone). Dr. Schwendimann also suggested C, E, and Co Q 10, but after six months I got off of them (they are too hard to swallow).. I retired from the salon July 10th. I feel good, just have trouble with talking, swallowing and using my left hand. I feel weakness in my left leg, too.

Thank you for your info on your illness via your website. Please let me know how you are now. I will see Dr. Schwendimann July 28 at the MDA office aaacross from LSUHSC in Shreveport. I have an appointment with Social Security this Monday. Have you gotten on Disability?

Jane


MY RESPONSE

Jane, I am glad you sent me an email. I'm sorry to hear you have ALS also.

As you know from my website, I was diagnosed in March of this year. My Primary Care Physician sent me to see Dr. Kim, who referred me to Dr. Benjamin Nguyen. Dr. Nguyen sent me to Houston to Dr. Stanley H. Appel. He is supposed to be the #1 ALS Doctor in the world. I was lucky that Dr. Nguyen sent me to him.

I got back from Houston for my first ALS Clinic July the 9th. I got a very good report.

It started in my feet and legs. I started having cramps and charlie horses.

Jane, have you tried getting a pill crusher for the vitamin C. They gave me one in Houston, but I had to buy a better one here in Bossier. The one from Houston cracked and broke.

How did you get my web address? I have been trying to get it listed on the search engines, but didn't realize it was listed.

Maybe when you come to Shreveport on the 28th, we can get together and discuss our condition.

I started getting a check from SSI about May but I had to fight for it. I also have Medicaid until September, which is when my Medicare starts, I won't get my first disability check until October 1st.

My phone # is x-xxx-xxx-xxxx. I live in Bossier City, which is just across the Red River from Shreveport.

Let me hear from you.

Peggy

Jane's Response

Dr. Kim talked to me about going to Houston, but I'm satisfied with going to S'port. I have cramps I guess everywhere I have muscles. They started in my fingers and feet and legs. My fingers were vaguely weak and cramped when rolling or teasing hair and strands of hair slid out of my fingers when holding it up to cut. My tongue and lips felt thick, and my speech was slurred.. After Dr. Kim said ALS, I looked it up on the net and realized I was having fasciculations.

I went to the S.S. Office Monday and their seems to be a good chance I'll qualify. She said I would automatically get Medicare.

Maybe we can have lunch on the 28th. Should I call you when I get out of the clinic? How about Shoney's in Bossier?

I don't know how I got your website, but it was listed. I just typed in ALS and whatever I wanted info on that day. (I think it was jaw jerk. I found lots of helpful listings, but was interested in yours since you are near me, (I'm 55) my age nd new to this disease, too.

I will call you Wednesday, okay? I'll be the one that sounds drunk. Ha!

Jane

July 22, 2004

This lady would like for her name to be withheld until she knows for sure whether or not she has ALS. She is still going thru the process of elimination.


Dear Mrs. Williams,

I just found your website regarding your ALS experiences and want to thank you for sharing because I'm 42 and undergoing more tests to rule in or out ALS. Even though I do not know you, my prayers and thoughts are with you that you will find joy, peace and comfort everyday and I'm sorry you are going through this.

Your website has helped me to hear how others are coping with degenerative neurologic diseases. I began having muscle spasms and twitches all over my body along with increasing severe weakness about two years ago and becameparaplegic and wheelchair dependant a year ago. The first neurologist thought it was MS but my lumbar puncture was normal. However, my brain MRI shows lesions. I also have cervical spinal stenosis but that's not serious. I am taking 40mg of Baclofen daily plus other meds that are to help MS, Parkinson's or ALS symptoms. I choke sometimes when I eat and the docs have told me that a feeding tube might be necessary if I get pneumonia again from choking. I've learned to adjust my diet and that has helped alot.

I found it interesting that according to the information on your site, your EMGs were normal but obviously there are neuro problems and you were diagnosed with ALS. I haven't had a needle EMG yet. My NCV study was normal last year. I will have another MRI of my brain Friday and EMGs later.

I never write to people I don't know but after reading your information, I felt it was time. I'm tired of waiting for a diagnosis but know that it is a process of elimination. I certainly don't want any of the possible diagnosis that the docs have listed but I know we must deal with each day as it comes to us.

I worked as a nurse until last year when my legs refused to work anymore. My hands are clumsy too and I have adapted by not wearing clothes with buttons or zippers. I am divorced, a single mom of the best 12 year old son anyone could hope to have and I'm finishing a degree. This illness has been an education that I didn't plan on and has forced me to slow down and appreciate my blessings. It also gives others the opportunities to serve and I'm learning to accept that but it is tough because as a nurse and mom it's just part of who I am to serve others.

I wish you the best and would enjoy hearing from you. Please forgive me for ramblin on so about myself!

Thanks again for opening your world to others.

God bless you and your family,

Name Withheld

FIRST ALS CLINIC
My sisters, Betty Lou, Jeanette and Sandy went to Houston with us in the Motor Home, when I went to the ALS Clinic on July 9, 2004.

My ALS Team in Houston is Dr. Stanley H. Appel, Joan Appel, Diane Mosnik, Wendy, and Anne Swisher.