Expanded Disability Status Scale (EDSS) - Multiple Sclerosis
What it Covers
How MS Symptoms have Impacted
How MS Symptoms Impact
Your Name’s Daily Normal Activities
UPDATED TO YOUR DATE OF COMPLETION
Ability to walk
Ø My left foot has been numb since about 1985; the right foot since about 1999.
Ø Both feet have the “pins & needles” sensation continuously, along with severe pain when rotated or moved.
Ø The left leg is numb to about 3 inches above the knee, and the numbness is increasing up the thigh
Ø The right leg’s numbness is traveling up about half-way to the knee.
Ø Currently, I use a brace on my left leg, as it has the famous “MS Drop”, and is unusable.
Ø I have two forearm crutches.
Ø I cannot walk more than 10 feet without assistance; the 10 feet requires “wall walking”.
Ø I have a 3-wheel scooter to use in any distance moving to conserve energy for the “here” and the “there”.
Ø I cannot stand for more than 10 minutes at a time; sometimes this is only 5 minutes.
Ø I do dishes about one time a week; luckily, I can bend and rest against the wall in my new kitchen.
Ø Having moved in with my son and daughter-in-law recently, I have help with household living chores.
Ø I have a pedicure every month, as I cannot take care of my feet properly.
Ø I sit in the shower; air-dry my hair, and normally avoid standing. I have a chair in the bathroom, so that activities can be accomplished sitting down.
Ø My feet are no longer coordinated. It seems that they do not do what I tell them to do. Part of this is the spasticity of the muscles. For example, I can sit, and my leg muscles will jump and twitch all by themselves. In 2003, this spasticity has spread to both legs.
Ø My hands and arms also are not coordinated in major and minor movements.
Ø The biggest coordination problem that I have is the vertigo that comes from my vision problems. Scanning left to right makes me dizzy and nauseous; also, fast movement makes me dizzy, nauseous, and I loose my balance.
Ø As the numbness increased in my right leg, I changed my driving to concentrate on visual cues, as I could not feel the driving pedals. This, coupled with the increasing visual problems (see below) caused me to loose my license effective September 2002.
Ø The lack of coordination in my legs makes standing, walking and climbing difficult.
Ø I find that I can no longer lift much of anything; I have someone else do my bringing in of groceries and the mail.
Ø I no longer cook. Thank goodness for the microwave, fresh fruits and vegetables. Now that I am living with family, I can enjoy home cooked food once again!
Ø The lack of proper hand coordination is a symptom that I find during my typing on the computer. I’ll mix letters; consistently leave out the “o” in you; think one letter, and type another, etc. (It took me 4 weeks to do this matrix. 8 corrections!)
Ø Walking in large open spaces, having to look left and right to avoid traffic makes me want to throw up. I avoid it at all costs.
Ø I do stretching exercises for about an hour each day to work on keeping what coordination I have.
Ø I have continual bruises, cuts and bumps from falls and walking into things.
Includes speech and swallowing
Ø At least once a week I’ll choke while swallowing, and liquid will go down into the lungs.
Ø I consistently wake up at night choking on saliva; or regurgitating.
Ø I am beginning to have problems speaking. My mouth feels like I have mush in it; I consistently forget words.
Ø I follow the Dr.’s instructions, and do not eat raw carrots, peas or rice without liquid to make sure they are swallowed correctly.
Ø I have raised the head of my bed about 6 inches to keep from choking at night. I also sleep on multiple pillows to keep my swallowing working with gravity.
Ø As the face and head become more and more numb, I find that speech, at times, is more difficult than at other times.
Includes touch and pain
Ø No one told me that MS causes pain. Well, let me correct that – there is a lot of pain with MS. The best way to describe the overall sensation is that at it’s worst, all of the muscles of the body feel like the worst flu that you ever have had, and NOTHING can make it go away. The headaches, due to the optic nerve problems, result in severe pain at one side of the temple, going across the top of the head, to the other temple. This takes about 12 hours.
Ø Numbness also is a factor. The entire right side of my face is numb about 25-30%. It feels like the Novocain you get from the dentist – but it does not go away. This numbness has increased to cover the entire scalp.
Ø When the nerves don’t adequately “talk” to the muscles, the resulting impact on the muscle is to clench up – like a “charlie horse”. As my abdomen has nerve-muscle problems, any way that I twist results in a severe cramp in the torso.
Ø Another pain that is hard to avoid is bending the chin down, and having electric shocks go down the back.
Ø Any prolonged position (over 15 minutes) will cause the muscles and joints to cramp.
Ø I used to take advil (up to 4 extra strength tablets at a time) for the pain. At the bad times, this amount of medication didn’t even phase the level of the pain. What is almost worst is the “dull toothache” overall pain every night when I try to go to sleep. Now that I take Vioxx for the pain, it offers some relief. The Baclafen for the spasticity offers some help, at least during the day. I don’t twitch and “jump” all day through. Trying to sleep is another matter. It takes about 3-4 hours each night to get the muscles to relax to get to sleep – MS form of insomnia! Then, once asleep, I DO NOT want to get up – the MS fatigue factor.
Ø After the move to the new home, I went for a week without Vioxx. The muscle pain and cramps and joint pain (like the worst arthritis ever) came for days.
Ø The abdominal cramps make going to the bathroom a daily exercise in pain and anxiety. More than once I have cried in pain in the bathroom until the pain stoped. More than once I have fallen off of the toilet (once even sticking to the toilet seat, and landing on the bathroom floor still on the seat) just trying to wipe my bottom.
Ø The muscle pains are still such that I no longer stand in the shower; I do not bother with make-up, as I can’t hold my arms up long enough to apply it. I have a “wash and wear” hairdo.
Ø I’ve mentioned before that the right side of my face/head is partially numb. Two examples of the impact of this are: 1) if I pinch my right ear lobe, I can “feel” it for up to 10 minutes. 2) I must wear earrings that I know won’t fall out, because I cannot feel the earring in the right ear. As of January of 2003, this numbness has spread to cover the entire face and scalp.
Ø The arms now are becoming numb, and it hurts to lift anything without assistance.
Ø Bluntly, the anus muscle no longer closes, nor does it “clench” to push out the fecal matter.
Ø Balancing a diet to keep regular – not too hard and not too runny is a daily challenge.
Ø The Doctors have told me that at some point, I will have to “train” my bowels to work at the same time each day.
Ø It takes about 30-45 minutes for each bowel movement.
Ø I wear pads, and need to change often. Any laugh, sneeze, cough, bend will cause the bowels to release.
Ø Forget about controlling flatulence – one just avoids food that will cause it.
Ø Wiping and trying to remain hygienic has led to the constant presence of hemorrhoids and continual cuts and pain. I tried zinc oxide and Aveeno, with limited success. My Doctor prescribed Calmoseptine, and it appears to work better. I use it 2-3 times each day.
Ø I take daily stool softeners to remain regular.
Ø I never thought that one could have incontinence and “failure to empty” at the same time! Now I know that you can.
Ø Balancing having enough liquids without spending all the time in the bathroom is a consistent challenge.
Ø When I first started having to go to the bathroom 4-5 times each night, then fought to get back to sleep, I took Ditropan. This left me drier all right – I didn’t have enough “spit” left at all! Also, it led to nosebleeds from dry sinuses. So, I stopped taking that medicine.
Ø Thanks to the continual pads that I wear, I catch leaks.
Ø Going to the bathroom takes about 5 minutes. One has the urgency until you sit on the toilet. Then, you go through gymnastics to get the urine to come out. I realize that daily catheterazation is on the horizon.
Ø I have learned that laughing and coughing always cause leakage.
Ø It becomes a daily challenge to ensure that body odors are properly “managed”.
Ø When I had my first optic neuritis attack, the Doctor said that I had a migraine, without the headache. Now I know what they are, and can better manage them.
Ø In 1998, I had my eyes checked, and new glasses prescribed; within 6 weeks, my vision had so deteriorated that I could no longer see. Going back to the Eye Dr., I needed a completely new prescription, and trifocals. He sent me back to my Neurologist, who did the Spinal Tap.
Ø “Black holes” in my vision are scary, but manageable.
Ø Double vision, the inability to focus on things near or far, problems with depth perception, night blindness are all daily challenges for me to manage.
Ø As indicated above, balance, dizziness and nausea also are daily if not hourly occurrences.
Ø Up until about 3 years ago, I was able to read 3-4 books each week. I still love reading, but I need to balance close-in vision with far vision. If I try to read too much, or look in the far distance too much, I risk the dreaded nausea and/or headache. I still read – just much, much less than before. I also have to reread pages as my “logic retention” is not as great as it once was.
Ø My driving ended when, coupled with the leg numbness and incoordination, visual blackout frequencies continued, making driving hazardous.
Ø The visual challenges often trigger panic attacks. If I get too hot, too tired, upset, or anything emotional, the vision “holes” come, followed by headaches. I’ve come to identify headaches as my body’s way of saying SLOW DOWN! Cold showers; a cold wash cloth; music and a darkened room with time seem to be the only relief here.
Ø I no longer go to the movies very often (once a year); the motion on the wide screen makes me violently nauseous.
Ø When watching TV, I cannot watch any action – it is too hard for my eyes to follow, and I get instantly dizzy and nauseous.
Impaired memory and cognitive functions
Ø I often forget names, words, trains of thought. This irritates me, which can lead to anxiety attacks.
Ø Any task requiring multi steps, I now avoid with a passion.
Ø If you look at my home, you’ll find stick-it notes all over the home to remind me of things.
Ø I have developed strict patterns of behavior to avoid having to “remember” things. For example, the telephone and the TV remote must stay in the same place, so I won’t find them in the refrigerator by using my cell phone to call my home phone to locate it.
Ø I no longer watch movie rentals, as I can’t figure out how to work the VCR. One of my children helps reset the clocks at home every 6 months.
Ø Similar words present problems. Work and word for example; “Country Squire” and “Country Singer” were the challenges last night (I love watching A&E’s mysteries). Tuesday and Thursday are often mixed-up for me. If I am not careful, the alarm clock will be set for PM when I need AM; etc.
Includes any other neurological findings attributable to MS (fatigue; sleep problems; aversion to heat, depression, panic attacks, social issues, etc.)
Ø FATIGUE is a huge factor for me. Up until about 5 years ago, I routinely could work 70-80 hour work weeks; take care of the home; raise two kids; and still have time and energy to get involved in social and volunteer situations. Today, just the thought of getting out of bed is hard; emptying the dishwasher takes 3 - 10 minute tasks. Forget doing the dishes!
Ø The irony with the fatigue is that for SLEEP it is coupled always (at least for me) with insomnia! No matter what I do, even when I take 2 more Baclafin tablets 1 hour before bedtime, it will take me 2-3 hours to fall asleep each night! Then, I cannot seem to wake up in the morning.
Ø HEAT – I cannot stand heat! I have twice “passed out” from not monitoring the heat level of my body. I’ve now learned, and have a “cooling vest”, many fans, and with the move, have central air conditioning!
Ø As can be seen in other documents provided, I am an extremely positive person. Before I went to See Dr. XXXX, my Neurologist in 1997, I went through some difficult personal times (1993-1997). Depression hit me in a big way, as did panic attacks – the first that I had ever had. I tried to talk myself out of them, and when my thoughts turned to suicide, I went to Dr. ZZZZZ.
Ø Social Issues crop up, and must be managed. It is too easy to become a hermit.
Ø Dealing with the MS fatigue has been very hard for someone like me, likened to a “heat-seeking missile” when focused on a task! If I were to give in to the fatigue, I would never get out of bed! Just the though of writing a check is hard and seems like it’ll take too much effort. As an example: On mornings when I shower, even though I sit in the shower, and do not “mess” with “doing” my hair, I have to sit for at least an hour to regain my energy before proceeding to the next task.
Ø The fatigue is such that you CANNOT ignore it. If I push my limits, the flu-like symptoms that I get are so bad that they are the “10” level on my pain scale, and NOTHING can take the ache in every muscle of the body away!
Ø Learning to “manage” the fatigue; to balance the insomnia; and to make sure that the bills get paid, the groceries picked up every now and then – all of this has become my full time “job”.
Ø I’ve learned through research that when the myelin has been impacted, the nerves have to work many multiple times to get the “message” to the muscles. Hence, trying to “cool the body down” takes away whatever little energy I have even faster. On hot days I become a mole – a cool dark room; lots of water, slow to no movements, and survive! (The new home has central air!)
Ø Depression and panic attacks, I learned, are real, and one cannot just “talk oneself” out of them. Dr. ZZZZZ prescribed Paxil in 20mg pills. These worked wonders up until I started taking the Avonex. Finding out that the MS was real; that I would be having to inject myself with Avonex on a weekly basis – Dr. ZZZZZ upped the Paxil level to the 40 mg pill level. I cannot express in words how devastating this disease is. No one can tell you what to expect; how the symptoms will progress; what to do to manage. AND, company STD and LTD plans are not easy to understand and manage!
Ø I set a goal to do something social once a week – even if it is just a face-to-face activity with friends.
Bottomline: As of Date of Completion, (the date of this update for Your Company LTD) my week day and week-end days have become pretty much the same. Up between 11 am and 1 pm. Then rest; shower, meal, 10 minute chores and rest. Now that I am in the new home with family, there is help with chores like groceries, laundry, changing the bed, house cleaning, and bill paying - (greatly appreciated!). Nap in the afternoon; music, some reading, some TV; dinner; lots of fruit, vegetables, and liquids. Between 11 pm and midnight, I usually go on the computer to answer email messages, and to assist folks with disabilities through “Ask the Expert, on About.com. Attempt to go to sleep about 2-5 am; toss and turn until the muscles stop aching and twitching enough to get to sleep. I have learned how to go to sleep with music, or to the drone of the television (alarm set for 30 minutes). Final note: As an indication of my mental capabilities change, I had to have my son proof read these documents, after I typed and proofed them myself up to 7 times. He found many errors – particularly the kind where the left-right hand word error could occur (i.e., seft instead of left; work instead of word;).