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| My Study of Disability From a personal Viewpoint |
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| Have primary progressive MS but do a lot of things | Exercise can keep you from getting too deformed . |
| UPDATE: May.15,2008; Having PPMS or primary progressive MS doesn't mean you can't do any thing. But you get much more fatigued than before as progression continues. Someone got up some statitics about PPMS; As an average its about 13 to 14 years from time of dignosis till you will need a wheelchair full time.But i have done a lot of things and gone a lot of places in my scooter which I had in the forth year after my dignosis. Really a wheelchair is an enabler to a body with very poor walking gait. And its safer as folks with this form of MS fall down all too easily RET Some will be worried about progression every day.Don't! That is just another form of stress .And stress will make you worse its been proven. Muscles will easily atrophy on you without exercise .But with the tendency to not be capable to do much walking then hydrotherapy is your best way to keep muscles from loosing muscle mass aand turning to useless fat. Muscle tissue saved is worth the effort.It also requires more food to maintain muscle tissue .Fat requires almost none. Exercise has to be short as fatigue sets in quickly in about 15 minutes of exercise. Most MSer report extream fatigue .Fatigue beyond any you have had before the disease started. Its very hard to handle and lasitude sets in to the point you want to almost nothing.But you may also have a difficult time sleeping at night.Usually your doctor can prescribe something. . WORTHY USE OF LEISURE TIME: And having fun doing it. First of all I will repeat my defination of worthy use of leisure time I developed for my master thesis in 1970.It is also on the information on the home page of this web site. Leisure time isn't just free time when you have nothing else planned.It is time spent at an activity so interesting you will want to come back again and again.It will be; 1. Mentally stimulating so that what you do is actually remembered a long time with favor and desire to repeat it soon. 2. It will be physically demanding,and if you are a wheelchair user then it will stimulate to the point you may forget you are disabled and sitting there.But don't bit off more than you can physically handle. 3.It will be soul satisfying in ways that are never reached just watching TV or reading. There are a few activities which have been mentioned by users of wheelchairs both because of MS or other disabling reasons. Go fishing either from shore or a boat.Yes many in wheelchairs have been able to even transfer into a small boat.It has been done. Bake something to give to some one you are fond of and needs some cheer coming their way.It could be just cookies from a prepaired mix,but the joy the person who is the receiver of the cookies will glow and so will you when you see what it has done for them. If you remember their birthday with either baking or a simple gift you both will get the same glow. start to make something which has lasting value,it could be from yarn,cloth leather,clay,or a art painting.But its something you will give of your labors to another.they will value it for many years to come.although it may be time consumming for you to make ,maybe like a hooked rug,they will remember you and the self made gift for many years. Write to someone who really needs companship. And do it regularly,it could be by e-mail or snail mail.Then call them on the phone on special occassions. Form a small club which is local in character.The group must be small.The reason for meeting can vary from Bible study to just plain story swaping.The size of the group should not exceed 6 people.that is the only way to have good interaction and exchange of ideas. If you grow to more than 6 form a secon group. Meet either in homes or at some place which is free or very inexpensive at least once a month ,maybe even twice a month.Have refreshments. |
Some of the people who have written me have indicated that they are beyond exercise.There bodies can take almost no exercise. I don't doubt them. But I do say if your MS is or might be going in the same direction you can do something about it. One such person who wrote me about her twisted MS body admits she started to think about exercise too late. Too Often we just accept the fact that since we are in a progressive form of MS it will just happen and we should gracefully just accept it. No way.The disease will progress.But we can greatly slow it down. Exercise, diet and medication will do it.Attitude also is necessary to impliment the program to save you from total use of the wheelchair and worse that that.Bed ridden status. Many of the people now in wheelchairs and bed ridden have been in the status of fast progression for many years . Even with them picking up on one of the ABC drugs recently the progressive damage has gone too far before they started avonex or betaseron,or copaxion. Many are into deluted cancer drugs just to stave off even more progression. But good luck to them. In many cases it might work. But early use of an abc drug and exercise with a good diet,fairly free of animal fats will do all you can do. On exercise some times its hard to drag yourself to doing it but most therapists tell me it will slow down progression even us withPPMS.RET update 9/29/07 . |
| Life as a progresive MSer it can still be fun. | Buying shoes for metal and leather braces. |
| Too many times we see MS affected people not enjoying themselves.I realize this isn't a disease to be taken lightly.But there are still joys to be enjoyed. I'm thinking of the progressively affected person.Not the newly dx who is still working but is exaused all the time. The progressive like myself does a lot of sitting.movement is difficult and we have sore bottoms from being seated too long. Our eye sight is poor and we have a tremor.While I use a scooter it is part time but crutches and my AFOs are the rules of motion. I get joy naturally from my computer and being a surfer on the internet.I also get a thrill from maintaining two web sites. I meet a lot of fine people.Not all are either able bodied or disable. My other joy is swimming.Although it is quite exausting and I nap when I get home, it's still what keeps me going and the 1/4 mile at least 4 or 5 times a week is enjoyable. My other passion is going to the malls.There on my scooter I meet many people , a few are disabled and in either wheelchairs or scooters.It fun to have a cup of coffee with them.It's a beer now and then sometimes.Many of these people have cars of their own and have hand controls like myself to get there. Travel is also a passion of mine.Cruises are the best for disabled people Finally art seeing it in museums, and also doing it both in clay and water colors is a thing I do regularly.I also make all our greeting cards with water color paper and original water color designs. RET 9/6/2001 |
I will not name the mall,but be it enough to say it is HUGE! We seldom go there as it is a great distance from us.But I was ready for the Big City. When we go there it is a strain on both of us so we stay over night in a hotel. Being of necessity I was on my scooter naturally.I also carry my folding crutches with me .And althought the great Mall is air conditioned I still wear shorts.My new braces are easily visable. My main reason for wanting to make our almost annual visit to this mall is I wanted the largest selection of shoes,that might be adapted to fit my braces.They ar the type that are fitted to the shoes.I'm still eepected to wal a bit so I'm not sitting all day. Finally after a long search I found the ones which suit my taste in shoes and will be acceptable shoes for the shoe repairman to fit with sturip plates on the bottom of the heal. The shoes cost me a cool $250 as they are very fine high grade leather shoes made in Italy.Naturally I tried on both shoes,but without the braces I couldn't walk about with them on.Even as short as I do and then get back into my wheelchair. Then as I contacted my wife some where in the mall by our phones(celular) I informed her of the purchase and the fact I was tired.But I told her to take her time and if I really got too tired I would go back to the hotel. Next I decided to just go out in the great hallway in the mall and sit in my scooter. Soon I had the urge to try on the shoes again,sitting in my scooter I took off the braces and layed them aside.Put the new shoes on and wiggled about my feet. Soon a person came up to me in a scooter and asked me if I had MS. "How did you guess" I replied. "It takes one to know one,she answered. Then she asked me where I was from i answered _________. In central Florida. She was from Miami.Then she said you come a long ways for a mall. Then I told her just what I finished tell you all. " How long do you think you will be able to wear those expensive shoes?" she queeried. I really don't know .I answered.I know she was really asking me if I believed I would be in a wheelchair totally soon. So then I said I like the shoes and I'll still wear them if I go to a full time wheelchair. No you wouldn't she retorted.In this climate you will wear sandals as it would make any walking difference in a wheelchair. I had to admit she was right as I have lived in the Florida climate now 19 years and knew better. |
| Eileen Lukeman and Richard Tanner | FL. | Eileen(Lobosgirl) and Richard (RET1000) both at aol.com |
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