ALS..Amyotrophic Lateral Sclerosis

 

Just me on the our first spring day. 5/03

My Husband, Me and Megan about 1994.

This is me in the fall of 1999. I was quite active then. My favorite spot walking in the woods.

Me and two of our four dogs. Toby, behind me, Katie in front. 12/02

        I am a Registered Nurse and worked in a Extended Care Facility in a Management capacity for 10 years before retiring in December 2002. It was something I swore I would never do, but after working in the hospital setting and then switching over it was much more rewarding. My mother was also in a nursing home for 10 years and for the last 5 years I had her with me at the same home I worked with up to her death in 1999 at the age of 91. I have developed a neurological disorder since that time and have progressively gotten weaker. I can no longer walk unassisted. I have been diagnosed with Amyotrophic Lateral Sclerosis, better known as Lou Gehrigs disease The rabbits and my friends have kept me going.

About ALS:

        Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disorder that affects thousands of Americans each year, causing paralysis through the progressive death of motor neurons. Thirty thousand Americans have ALS, and 250,000 Americans alive today will eventually die from the disease. Although ALS mainly affects patients over fifty, it can strike at any age. It also strikes without warning - nine out of ten patients have no family history of the disease. Most patients die within four years of diagnosis. There currently is no known cure.

ALS Links

This is the tilt action of the Sunrise Quickie P 220. This wheelchair does back yard travel and handles curbs, bumps, inclines..7/03

I use my motorized wheelchair exclusively now. I still use my AFO’s (ankle, foot orthosis) for transferring and standing. 7/03

We have two kittens that hitch rides all the time. They are either in my lap or on the back of my wheelchair. They enjoy riding.. 10/03

        My disease started in 1999 and before. I was never diagnosed officially until July 2002. When I was diagnosed I had already had significant loss in my left leg, my right leg, both hands and my speech was slurred. I began my disease when I noticed something being wrong with cramping in my left calf and toes at night. My left leg got weak and I was tripping before I realized I had foot drop. The weakness spread within the year to the right leg and then up to my left hand and then my right hand. My speech began to be affected in 2002. While I was looking for a diagnosis, I changed primary Doctors twice and saw 8 different neurologists. I was diagnosed with a pinched nerve in my knee and was told I would get better. I was also treated for Mononeuritis Multiplex. I received weekly IV solutions of Solumedrol, took daily Prednisone and then had 5 days a month for IVIG . I had over 7 EMG’s, 3 Spinal Taps, Myelogram, CT Scans, 3 total MRI’s, muscle and nerve biopsy, Bone scans, experimental exams at Mayo clinic, way too many blood draws for everything under the sun.

        I had many, many bad falls through out the years. In the year of 2002, I slipped on the ice and fractured my right ankle. This was my good leg. I ended up in a cast for 2 months along with a wheelchair. I then progressed to a walking cast and a walker. I was doing fine until September of 2002, when I decided to walk down the hall without my AFO’s on. I turned my left ankle and fractured that. History repeated itself. I am now affected in 3 out of 4 regions. Since I retired this year, I have seen my greatest decline. I suffered another bad fall in June 2003 when I was at the Doctors office. I landed on the x-ray table and cracked some ribs on my left side. This really set me back. I became totally dependent for care due to the pain I endured. I sat in my wheelchair most of the summer. This pretty much weakened me not to mention the trauma. It took a long time to regain the ability to transfer myself, walk again and dress myself.

        I have found trauma, stress and depression to be of great importance to me since I have declined. I stay away from all 3. Love, Faith and Hope and I will add God is what will keep me going and other PALS (patient with ALS). I try to enjoy nature and the little things that I missed while I was so busy working and going through everyday quickly.

        I find my greatest support from the “Living with ALS " list on Yahoo. Address is : living-with-als@yahoogroups....email address: living-with-ALS@yahoogroups.com have made many friends here . I could not face every day without my friends for support even though they live all over the world. I have lost friends here also to the disease. . There are web pages to be viewed under “ links" that you will find very beneficial and inspirational from other PALS. For those that are not familiar to the disease, these pages can help you. For those of you looking for answers or are just newly diagnosed, these pages can help you greatly too. These web sites have such good information on them; I don’t want to repeat the information here.

       I have had help with obtaining equipment from the MDA clinic. I always recommend them to any newly diagnosed PALS. A good ALS clinic is invaluable also. The clinics have a neurologist, therapists, dieticians, social workers, respiratory specialists that are all equipped to help ALS patients through our stages. The MDA clinic has a loan closet where they can help loan you wheelchairs, hospital beds, communication devices and other items.

        UPDATE . Its almost 2005.....wow.. How things have changed since I last have updated this site. My husband built an addition for me.My son helped. Many of his friends gave countless hours building. The plumbing and electrical was all volunteered. Our wood trim was all volunteered. Family dug by hand footings and did the block work. We can't repay them for what they did. I now have a handicapped bathroom with a roll-in shower. A beautiful room with windows all the way around. I sit here all day on my computer. I can see the peacocks from where I sit. I watch the deer come in to feed. It is a beautiful room. We also have a first floor laundry room now. I have a beautiful deck and ramp so I can roll outside.

        Family and friends bring in meals. I now have caregivers. I would like them longer in the day, but who can afford that? I am no longer walking. My speech is gone. I can still stand after being lifted. I have my PEG tube now but still eating small meals. I am pretty dependent in all areas. My typing is down to 2 fingers. Neck and shoulders very weak and hard to hold my head up. My body has started to shrivel up and I look like a 80 year old in many areas. My hands are crippled looking. I am in pain alot. ALS is painful and don't let anyone tell you its not. My husband does Range of Motion on me which helps with the bone and muscle pain. Massage is wonderful.

        I know we all ask ourselves everyday..”Why me lord?” I have found faith in GOD. We are never given more than God thinks we can handle. We all were strong before this disease. We now have to be even stronger than we were before. NEVER GIVE UP!!

         ALS Photo Album