Welcome to my Monthly Journal on the daily struggles with ALS (Lou Gehrigs Disease).

I was diagnosed November 1998 after about of year of testing. My disease started after I had surgery, and it continues to progress at a steady rate.

• November 1998

My diagnoses came after many tests. I had 2 MRIs done had neck ex-rays blood test 2 EMGS done bone scans done. Finally after ruling out many possible diseases that act like ALS my Neurologists sent me to the ALS Clinic at OSU. Where I met With Dr. Nash and he ran another EMG o n me and reviewed all the records he had received. After eliminating all possible causes and diseases he said I had ALS. I was shocked to say the least

• December 1998

Doctors visit at The ALS clinic at Campbell Hall.

Seen Dr. Nash he did a full evaluation of me. He checked all my muscle movements and my reflexes. At this stage my only symptoms were hand weakness and dropped toe and muscle cramping. He prescribed Rilutek and Baclofen and Beta-Carotene and Vitamin E. He suggested I start wearing ankle braces. We also started Bipap therapy. My FVC is 85%.

• December 22

Received my AFOs they helped a whole lot.

• January 1999

Went for my 3-month check up. Everything still the same except twitching is increasing in my arms. My hands are too weak to write very well exploring options to help. My walking is better with the AFOs but getting tired easier and steps are getting harder to get down. My FVC is still 85%.

• February 1999

Still about the same. Twitching is increasing in arms.

• March 1999

The Company I worked for built me a nice wheelchair ramp. I had to retire from my job as a Mill Worker because the liability to the company was too great. They tried to put me in other positions but the weakness in my hands prevented it. So I chose early retirement.

• April 1999

Went for my 3-month check up. Had blood work done FVC is 84%. Talked about twitching in arms and now in both legs. Dr. Nash said it is a sign of progression and upped my medications. Everything else seems to be fine.

• May 1999

I’ve noticed some changes taking place. My hands continue to get weaker probably due to the heavy use they received from work (controlling 300 lbs. roles of rubber on the mill). I’ve noticed I’ve been stumbling more especially in the woods mushroom hunting. Can’t bend over without losing my balance. Increasing fatigue when on my feet. Having extreme muscle cramps they hit me at night and last for a while.

• June 1999

Still about the same. Continue to have muscle cramps at night, Baclofen not helping had to train myself not to stretch when I wake up or it triggers the cramps. This was hard to do because the Muscles seem to shrink as the disease progresses causing the brain to make you stretch. All other symptoms still about the same. The thing I miss the most is not being able to use my hands there were my life. I manage the best I can but being not able to garden or build it’s hard to except but I must or things will get bad for me so I try not to think about it.

• July 1999

A lot of changes happened to me it seemed like over night. I can no longer write but can still hold pen in hand. This prompted me to change my banking from doing it myself to having a computer do it. My brother bought me Quicken Basic and set it up for me and transferred all my accounts to online banking> this has given me new freedom to still be able to manage my affairs by myself. I found out the hard way I can no longer go down stairs without help. I fell down three-step thought I killed myself but just bruised up and sore. I can still go up steps with no problem as long as there is a handrail to hold. Went fishing today can still do that but someone has to bait hook for me. Were building a 40 by 42 barn at the farm and all I could do was watch and hand things to them this was hard because it showed me how this disease has affected my body. I was able to steady the 6x6 post while they set them I was happy then realized how hard it was to walk on uneven ground it really takes it out of you. I can still run the tractors at farm and driving is no problem.

• August 1999

Three-month check up Dr. Nash says I have noticeable atrophy in my hands and forearms and losing muscle tone in legs. My fingers have curled and can’t straighten them out. Doing range of motion exercises to help the pain involved. My FVC is 85% it hasn’t changed. Jerry Reynolds says it’s the breathing exercises that are helping me. My range of motion has decreased in my shoulders and Wendy King suggested physical therapy, which I did for 6 weeks and the range is a lot better with no pain Dressing has become more difficult it’s hard to put shirts on (no more button type) and pants are hard to button too. Socks are extremely difficult to get on and tying shoes is out. Have to use elastic shoestrings, which work fine. As this disease progresses you have to find new ways to live, sometimes it’s easy sometimes hard depression can set in quick if you let it. It has several times for me sometimes things get to over whelming to handle and I turn to good friends to help me through it. Dr Nash prescribes me Zoloft I don’t know if it helps though.

• September 1999

Things are pretty much the same. Except its getting harder to move in bed it’s a struggle to turn over and can’t sleep with covers on me. I feel trapped with covers on. I’m single and that bothers me because soon I will need help turning in bed. Looked in on buying satin sheets haven’t done it yet still fighting without them. I can tell that there is major changes taking place inside me and can’t help wonder how long I have. It’s been almost a year and ALS has taken its toll. The weather is changing here getting colder every day and that worries me. Last year I fell three times on ice and now I’m much worse. I just wonder how I will cope with being cooped up all winter. Winters are always bad for me I seem to catch something early and it hangs on all winter. Now it makes me wonder if it was not ALS doing it, can’t find any proof on it but it makes you wonder.

• October 1999

Well it’s my birthday this month I turned 44 wonder if I will make it to 45. I met an old girlfriend from school on the Internet. I haven’t seen her for almost 25 years. She runs a Web Business selling unusual Christmas items and collectibles. Her web address is www.hometraditions.com stop by her site and tell her Steve sent you she has some very nice items. She has become a very good friend again and I hope to see her soon. We talk almost every day by email and that helps my spirits a lot. I can no longer cut food but still can feed myself slowly. Everything seems to get more difficult everyday.

• November 1999

Well it’s been a year now since my diagnosis of ALS a lot has happened since then. I was once a very active person who would work 16 hours a day with no complaints. I worked 8 hours at my job and then worked 8 hours at farm. I used to build barns and ponds and fished and hunted and walked for hours in the woods and dreamed of the things that I wanted to do next. Well the barn is up but the ponds are not built I can still fish but had to give up hunting and walking in woods. We had at one time 14 Belgium horses we raised and sold now we only have 4. I had to give them up too. Now all I can do is dream about it and that makes me depressed. All I have to look forward too is my close friends and family and my computer. I’m sorry if this makes you depressed but this is what ALS doe’s to you. My one year check up went ok my FVC is 84%. I’ve lost a lot of weight lately due to depression. Dr. Nash put me on stronger medicine hope it helps. All other symptoms are the same. He ordered hand splints to relive pain in fingers and ordered more therapy on shoulders and hands. Still trying to spend down money to get on Medicaid and home nursing. Were getting there. Thinking about redoing bath to make it handicap accessible. Hunting season is coming in and I can’t go this year and I’m upset about it. Medicines I’m on don’t seem to be slowing the progression. My friend Ann wrote and she was going to be at our local Lowes store putting up decorations and ask me to stop out if I could. I did and had a nice visit with her and we rekindled our friendship we had in school.

• December 1999

Walking is getting harder to do. I find myself stumbling a lot. Went to the specialists for my AFOs he adjusted them and it helped a lot. Got my hand splints very awkward to wear can’t do anything with them on don’t seem to help anyway. My condition has gone downhill for the last several months and it makes you wonder how long I have. Christmas was a bad time for me I got depressed and couldn’t pull myself out of it. I couldn’t Christmas shop because of lack of money and no job that upset me. A week before Christmas I fell hard on my side against my dresser I got bruised real bad but didn’t break anything. I had a pain above my kidney and two days before Christmas I feel again right on my butt and back. Christmas came and went and I was unhappy and in pain. I went to my Doctor here and he set me up some tests and x-rays. The x-rays showed a mass above my kidney and he sent me for a CAT scan. It showed the mass it was my intestine. He said I herniated my Intestine when I fell and it should go back on it’s own without surgery. Since then it’s been okay. My cousin from Croton came for a visit and brought her two kids. This is another friendship rekindled since my diagnosis. The last time I saw her was at her wedding. Now she tries to come as much as she can. I always look forward to their visits. Now we talk almost every day on the computer.

• January 2000

Well I made through the Y2K scare (America’s b biggest farce).

Things are getting tough to do everyday chores are getting impossible to do. In the process of getting my bath remolded. Having difficulty finding the right agency for money to revamp it. I know it‘s out their just have to find it. It’s snowing out and that means I will be confined indoors until it melts to dangerous to go out. I’m thinking now I should get some home health care soon as it is becoming impossible to dress and bathe myself. I am checking into different agencies to see who has the best for my situation. I was turned down Medicaid again still have to much money. My condition has detoriated some. I’ve noticed me drooling more. I get real tired walking only can walk for about one hour. Steps are out without assistance and handwriting is gone and so is holding anything in my hands. I’ve noticed the muscles in my neck are weak and it’s hard to hold my neck up. I feel that my progression has sped up and wonder how long before I die. None of the medicines I take seem to help. I’m very depressed probably because of being confined to the house for so long. Mom and Dad live across the street and can’t even visit them. I’ll be glad when winter is over. I was able to drive to my friend Ann’s house. We had a nice visit and got to see her house. It is a beautiful old home and she and her husband have done a wonderful job of fixing it up. They have one more floor to go but I don’t think I will be able to see it when they finish it because I don’t think I will be able to drive. She has a wonderful husband and two very nice children. Ann is a very special person she makes you fell good to be around her and understands my situation.

• February 2000

My three-month check up went ok. My condition hasn’t changed much. I’m still fighting t o get home health care but I keep getting denied by welfare. My goal to have bath remolded has hit a brick wall nobody wants to give money. My own opinion of the UNITED WAY is that it sucks. I paid into it for nine years and when you need there help they can’t help you. I’ve been turned down by so many of agency I’m tired of fighting with them and IM ready to give up. I seem to be more depressed lately because of all the rejections I’ve gotten lately. My cousins Julie AND Jeff came for visits and that got me from being depressed. The snow has melted and I can get out a little. Went to some stores and shopped but had to sit and rest. I know it’s time to get a wheelchair. I started to have chest pains so I went to see my cardiologists and he couldn’t run a stress test because of my condition so he sent me to OSU to have a heart cath done. The test showed I was 65% blocked. He put me on medication to relive the pain

• March 2000

A lot has happened this month. First of all, my best friend Ann father passed away. I was sadden to hear he had passed he was a major inspiration in my life when I was in school. He got me started in electronics and from that I became an electrician. He meant a lot to me and I will miss him. I knew his whole family I went to school with Ann and her mother worked at my bank. Her father was a meat cutter and did electronics on the side. I spent many hours at their house and had a lot of good times with Ann. He was a good man and now he is in a better place. Something happened to me after the cathetoration was done. I can’t explain but I’ve been going downhill faster. I can barley walk and need a walker all the time. I had a bad gout attack and my knee went bad all in the same leg they did the cath in. Makes you wonder. I ordered my wheelchair from Rehab Solutions and it should be hear in a few weeks. I ordered one with all the features on it because my Insurance is a one-time deal. The final cost was 28,878 dollars and it is an INVACARE Action. It is equipped with tilt and recline reclining vent tray power leg rest swing away lateral supports jay 2 cushion computer interface plus many more features.

I am getting upset with trying to rehab my bath. I can’t get any response from them the rehabilitation commission. My friend Ann also is trying for me with no results. I finally wrote to my State Representative and so did Ann and with in a day I got a response back and now I have a meeting set up for April 18.

I had two visits from Ann this month. The first visit we went to my farm and talked and visited the horses. I showed her around and she loved it. She wants to come back with her husband and walk around and fish. The second visit was after her father passed away and she brought her mother. She couldn’t stay long but we had a nice visit anyway. My cousin Janie came one evening and we spent the evening eating dinner and talking. This was the first she seen my house next time I’ll show her the farm. My cousin Julie came and brought her husband. We talked for a while and then went to farm. Fred caught a fish and wants to come back. Julie’s kids just love it there.

• April 2000

This month I’ve noticed my voice is affected. I notice my speech is slurred especially if I talk for long periods of time. I also catch myself repeating words more. I am having more difficulty swallowing and having a hard time feeding my self. It’s getting to the point where I must bring in help to maintain living alone. I finally got approved for Medicaid and the waver 4 program. Just waiting for an opening to get a home health aid to help me. I am on a Medicaid spend down program which sucks to say the least. I will use them only when my primary insurance runs out.

I received my wheelchair and it is great. It restored some of the freedom I had lost with this disease. Now I need to find some transportation for it this will not be easy.

Ann came for a visit. This time she couldn’t stay long. But we still had a nice visit. We're having incredible weather it’s been averaging 20 degrees warmer this April. It’s nice to get out and enjoy spring again.

I had to give my dog away she was too much to handle. I did not have the physical ability to train her properly and she took advantage of it. She was just a year old and I found her a good home with two kids and three acres to run.

It finally came the day I couldn't drive anymore so I put my truck up for sale. This was hard to do. It means giving up some of my independence but it was necessary.

• May 2000

The month of May has been a weird month, changing weather and changing health. I managed to get my landscaping done with the help of friends. Now the house is ready for sale. I want to stay here as long as possible but the day will come I will have to move. I’m having difficulty handicapping my house. I am single and live alone so money is tight and it hard to find anybody to help you out especially the government. But I’m still trying. I’m on the waiting list for the Waver 4 program. Maybe by June I will have an Aid. I could get one now but it cost too much by the hour so I will try to stick it out. I fell two times this month didn’t break anything. I’ve noticed I don’t recover as quick and my health suffers more. I’ve noticed it is easy to fall even with a walker. You try to be careful as possible but it happens.

They finally got my bigger doors in now I will be able to use my wheelchair. Now I am waiting on BVR to redo my bath.

My body has been failing this month. My legs are getting weaker by the day it seems and it’s getting harder to get up from a seated position. And sleeping in bed is getting to be difficult. Going to try a hospital bed and see if that helps. I seem to be losing muscle mass everywhere and this is making life hard. Had another Gout attack can’t take my gout medicine because it reacts with ALS medicine.

As the muscles in my neck and throat detoriate my swallowing has become difficult. They did a swallowing evaluation on me to see if I was aspirating and I wasn’t but I am having trouble swallowing.

Just as I thought I was getting better I passed two kidney stones. The doctor said I dislodged them from a fall I took.

Ann came for a visit and took me for a drive in the country. We had a wonderful time and plans too do it again. She’s able to relax from her busy schedule and I’m able to enjoy her company.

Ted and Lynn came for a visit. We talked about old times and plan on getting together again. They were coworkers of mine and I haven’t seen them since they quit. It was nice to visit with them and hope it continues.

• June 2000

This month was my 3-month check up. It wasn’t good news. First of all, my doctor said I had lost a lot of muscle mass in my legs and my legs were considerably weaker from last visit. I continue to go down hill. I am relying more and more on my walker and wheelchair to get around. More bad news from the clinic was my FVC has dropped from 85% down too 72% this I was not prepared for. They also started me on physical therapy 3 times a week.

I continue to grow weaker everyday. I can tell it has affected my breathing I get short of breath just talking. I now use my Bipap more during the day as well as at night.

The therapist continues her range of motion exercises to keep me limbered up. She also has me walking as much as possible.

I continue to go through these huge emotional swings. One day I’m happy next I’m nasty then depressed and so on. I guess I’m not mentally prepared, as I want to be. My dear friend Ann has helped me a lot to get over these mood swings.

I’ve lost most of my ability to feed my self. My arms are too weak. I am relying on my mom to feed me.

I’m having bouts of slurred speech and having problems forming words. I’m checking into various programs that might help.

I did make it to my cousin’s daughter’s graduation and her son’s graduation. She graduated from OSU as a registered nurse he graduated from high school and is going to attend Otterbein University.

Ann came down two times this month. Her mother and son Travis came with her the first trip. We took a country drive. The second visit she brought her best friends Rita. We had a very nice time. We took another drive. Ann has a special talent. She can make you forget about your problems. We also stopped and had ice cream.

Ted and Lynn came twice also. We sat and talked. Lynn brought me some fresh cherries and peas from her garden. My mom made two nice cherry pies.

MARCH 2002

WATCH FOR UPDATES COMING SOON.

AS YOU CAN SEE I HAVE BEEN NOT UPDATING MY JOURNAL SINCE JUNE 2000. BECAUSE IT BECAME TOO difficult for me to type and it was too depressing to see the constant changes. I will try to fill in the missing months as best as possible. Helping me to update my journal is my caregiver Cheryl, who patiently listens to my ever weakening voice. I will try to bring the journal up to date as quick as possible.

Since my last entry, a lot has changed, most of it for the worst. I’ll just start with my body. I am now, for the most part, wheelchair bound. I can still transfer from my wheelchair to my lift chair with assistance from my caregiver. I can bare weight for a short time, but this to is fading. My hands are for the most part, useless except for my right hand, which I can still control my joystick on my wheelchair. My arms have severe atrophy in them along with my upper chest. My legs are starting to show signs of atrophy. My voice is very weak and very hard to understand, some days are better than others. I find losing my voice is the hardest thing to deal with, with the disease. I find that I get short of breath when I talk a lot or if I’m tired. My breathing is very weak, my FVC is 35%.

February 2001 they finished my new bathroom. It has a roll in shower and is completely handicap accessible. March 3, 2001 I took a serious fall in my new bathroom. I ended up in the hospital for a week because of a compression fracture of two vertebrae. Since my fall, my progression has been at an accelerated rate. Since my fall, I have went down hill ever since. Before my fall, I had minimal assistance with healthcare aides, after my fall, I needed full-time care. Let this be a lesson to the bull headed people who think they don’t need help. I was the same way, I pushed myself until I couldn’t push no more to beat this disease, but in the long run after my fall , it got the best of me. I feel if I hadn’t fallen, my progression would not be as far along as it is now. After my fall, I was in bed for two weeks and it took a good month to get back on my feet. I have never gained back what I lost before the fall. I learned the hard way. From that day on I had no choice but to accept the fact that I needed help.