IBM (Inclusion Body Myositis)

One of the reasons for me to reactivate my blog was to keep track of the progress of my disease. Over the years reading of other people with this disease has helped me to plan my life and to be ready for each step. I hope that others, with my disease, will check out this blog and it will give them encouragement and hope. It will also provide a record for my family.

In the fall of 2003, I was diagnosed with Inclusion Body Myositis. After having lived a few months with the diagnosis of ALS, my family and I had become adjusted to the fact that I was going to die soon. More than half the people diagnosed with ALS die within the first two years. We were pleased to learn that IBM is not fatal and I would live many more years. We were disappointed to learn that the symptoms of IBM are not that much different from those of ALS, the progression of the disease, however, is much slower.

IBM gradually destroys the muscles in one's body. For me, it started on the outside muscles in my hands and feet and worked its way in. After this diagnosis, I realized that there were many signs of this disease dating back more than 10 years. About that time, I found that I could no longer mount a horse without help. I also found that I could not keep up when backpacking with the Varsity Scouts.

In 2003, when a cardiologist was checking me out on a treadmill, he told me my heart was fine but I had foot drop. That meant I could not hold up my toes when walking. That was the reason I had been having falling episodes. He encouraged me to make an appointment with a neurologist. The result of that appointment was a diagnosis of ALS, Lou Gehrig's disease.

Immediately, my physical therapist determined I should be wearing foot/ankle braces. With those braces it was easier for me to walk without falling down. We began attending support meetings for ALS. We noticed my disease was not progressing as fast as others in those meetings. I was asked if I would volunteer for a study on ALS, which I accepted. That required me to go through the testing process again. This time I was told I did not have ALS and probably had IBM. A biopsy of one of my muscles in my left leg confirmed the latter diagnosis.

At home I had numerous falling episodes which caused us to put our home up for sale. Our home had two stories above the ground and a basement. We knew we either have to remodel the home or sell. We decided to move into a one level house.

Over the next few years I gradually progressed from walking with foot/ankle braces alone to adding one cane and then two. With the braces and the canes we reduced the number of falls but didn't stop them.  There were numerous concussions, broken fingers, and many bruises. It became obvious that walking was dangerous.

At this time, we were serving as missionaries for the Church of Jesus Christ of Latter-day Saints in the Santiago Chile Temple. Recovery time was causing me to miss time serving in the Temple. I worried that I would be sent home early. Instead, Pres. Ted Lyon asked me what I would do at this stage of my disease if I were still in the states. I replied that it would probably be necessary to buy a mobility scooter. He said, "Then, let's get a scooter." Because of where we were and what we were doing, I knew I would get very little help in the purchase of the scooter from insurance. President Lyon, others from our mission and members of our family helped us come up with the money.
Bringing groceries home from the store.

So, we purchased a mobility scooter. That helped a lot. We were able to go grocery shopping, walking, serve in the Temple or other things we needed with the help of the scooter.This worked fine for almost 2 years and allowed us to complete our mission in Chile.

Grandchildren love rides.
There were still times I needed to walk even though I had a mobility scooter. Recovery times were taking longer and longer. My physical therapist said we should not concentrate on recovery times but on avoiding falling. With her guidance and a prescription from my doctor we were able to order a wheelchair. Between the help from our Medicare Advantage Insurance, Idaho Vocational Rehab and the Muscular Dystrophy Association, we were able to purchase a new motorized wheelchair. This chair has become a lifesaver for me.  It has allowed me to maintain my lifestyle and mobility and enjoy my family. Shortly thereafter, we purchased a mini-van, with a ramp, which I could drive from my wheelchair.

Even though we were living in a one level house, we needed to make adjustments for the motorized wheelchair. We discovered that my wheels dragged in grass and mud from the yard. Our solution was to remove the carpet from the living room, my office and my bedroom and install hardwood floors.

The Tush Push raises me to stand.
I can drive under the sink.
At first I was able to maneuver into the bathroom but that soon became a problem. To solve that problem we remodeled the back bathroom and opened it up so I could access it from the bedroom. This helped substantially because it allowed me to ride my wheelchair up to the sink or to the stool in the shower. With a Tush Push on my toilet it raises up high enough for me to transfer from the chair to the toilet.

About  the middle of April of this year, after a fall transferring between my wheelchair and my bed, my doctor recommended that I start receiving home healthcare. Luckily I had purchased long-term care insurance long before being diagnosed with my disease. In my case I can either use that insurance to stay in a nursing home or use it for home healthcare. It allows me to use caregivers for up to 4 hours per day. That has been a lifesaver for both me and my wife, Annette.

Getting my toenails trimmed.
A caregiver comes every morning except Sunday to help me with my personal care for the day and then helps with housekeeping. She comes again every evening except Sunday to help with the end of day duties and help me get ready for bed. She even helps with meals. She also fixes the meals that I will need during the day when she's not here.

All in all I have a very happy and busy life. I can't do the physical things that I used to be able to do but I can still find many enjoyable things to do. We are happy that we kept the mobility scooter because we often go for long walks (rides) around the neighborhood, on the Greenbelt along the Boise River or different parks. Annette rides the mobility scooter while I use my motorized wheelchair.

I wouldn't have chosen to have IBM but it really has not hindered a happy life. In fact, I think it has helped me to become a better person. At least I like me better this way.

Answering questions about Inclusion Body Myositis

Q:  What do you mean when you say, “reading of other people with this disease has helped me to plan my life and to be ready for each step?”

A:  One of the things I was advised to do when I was first diagnosed was to plan and be ahead of the game.

Q:  What you mean, “be ahead of the game.”

A:  It means to know in advance that at some point you'll need to walk with a cane. At some point you’ll need some kind of mobility device. At some point your home needs to be adjusted for your needs. Following that advice, I didn’t wait until I couldn’t walk to make plans to get a mobility device. From the time I received my first prescription for a power wheelchair until I actually received the wheelchair was more than six months. Had I waited until I absolutely had to have a wheelchair, I would have been immobile for a long time.

Q:  Some with your disease, or one similar, get very bitter, depressed or angry. What do you do to keep that from happening to you?

A:  If I thought for a moment that being bitter, depressed or angry would help cure this disease, I would be willing to be those things immediately. However, I have IBM no matter what I do. If I get depressed about it, then I am depressed and I have IBM. One or the other is bad enough without adding to it. So, I do everything I can to stay cheerful and upbeat. Sometimes I fail at that but for the most part, it works for me.

Q:  What do you do when you start to feel depressed?

A:  A friend of mine became paralyzed because of an accident while surfing in Hawaii. She said, “I allow myself to have one pity-day per month.” I have taken that rule for myself. So if I feel really down, that becomes my pity-day. So, knowing I can feel as sorry for myself as I want to on that one day usually helps so I don’t need to do so on other days. In fact, most of my pity-days only last a few hours. 

Q:   What do you answer when people ask, “How are you doing?”

A:  Most of the time I just say I’m doing great. People don’t really want to hear about my woes. Why would anyone want to be around me if I am always complaining about my body or how I feel? Sometimes I adapt a phrase that was once given by Mark Twain. So then my answer is, “Jim Marshall is doing great, but the house he lives in is dilapidated.”

If anyone happens to have any questions after reading this, please make a comment and I will respond.

Pain and Inclusion Body Myositis
September 12, 2014

Although pain is not included as one of the symptoms of Inclusion Body Myositis, I have experienced many pains because of it.

Frequent falls were the cause of many earlier pains. Before I started using a mobility scooter or a power wheelchair, I fell often. With some of the falls I had mild and even severe concussions. Of course, those caused many mild to severe headaches.

With those falls I broke fingers and toes. On one of those falls the pain to my femur was so severe I was sure it had broken. (It hadn’t.)  I've wrenched my knees so many times I can’t even count them. On one of those I tore the meniscus. Obviously, on all those injuries there was pain, some of which lasted for a long time.  They were not part of Inclusion Body Myositis but, I wouldn’t have fallen if I didn’t have it.

My head in traction using 12 lb. weight of water.
Wearing a collar to help support my head.
I have a constant headache ranging from a 3 to 8.  That could be carryover from the concussions. Another possible cause of my headaches could the that my muscles in my neck are no longer strong enough to hold up my head all day.  Sometimes I wear a neck collar to help support my head. That seems to help. I also have a traction device set up so my head can be put in traction while I’m watching TV or the computer. I can do that once or twice a day for twenty to thirty minutes and that seems to help.

Another pain that I experience is in my stomach or chest from too much gas. That probably happens because weakness in the muscles in my stomach make it more difficult for the peristaltic action to function properly. It could also be caused by my being sedentary most of the day.

 Pain is not a serious problem for me, it is just something I have had to cope with. I’m not writing this to complain but to share information with others who might have IBM or for those who want information about it. I hope this is helpful for you.

Eating with IBM
September 13, 2014

Since the atrophy of muscles with IBM (Inclusion Body Myositis) progresses very slowly my difficulties with eating have also developed slowly. At first, even after diagnosis, I could still cook and eat everything I wanted. Gradually it became more and more important to rely on others.

The last time I tried to fry an egg for myself, thinking it would save my wife, Annie, some time, I dropped the raw egg on the floor. So, instead of saving her time, she ended up cleaning up a mess. It is not uncommon for her to say, “Don’t try to save me time.”

The first time she had to cut my meat for me in a restaurant was embarrassing but now it is common practice. Now, it is not uncommon for whoever is sitting beside me to offer, “May I cut that for you?” The last time we went out for crab, my son spent most of his time digging out the crabmeat for me to eat. It was delicious!

Finding a place to sit in a restaurant is interesting. Obviously, because I am in a power chair, I can't sit in a booth. Usually the waitress finds me a table where she can move a chair and I can sit in its place. Sometimes that is uncomfortable because it is often located where everyone is walking back and forth behind me. If I have a choice, I would like to sit at a table out of the way where I don't bother people. One of the joys is I always seem to receive cheerful, helpful service.

Utensils for eating and tools to open drawers
So far I can still feed myself by using specialized utensils. They are bent so I can pick up the food and bring it to my mouth. At home I use a plate that has edges which allow me to push against it with my fork or spoon to capture the food. I always drink with a straw. I use plastic, when possible, because glass is too heavy.

My morning and evening caregivers usually help me by preparing my breakfast or my late-night snack. They also prepare a lunch or dinner that I can access when they are not here. Between the times my caregivers are here I have to rely on my wife or my son because I cannot open the refrigerator doors nor stand up to use the microwave. When they aren't here I have a number of snacks in a drawer in my desk. Even drawers are difficult to open so my occupational therapist made tools for me to use to open them.

I have to be careful in restaurants because, sometimes the more I try to avoid drawing attention, the more attention I draw.  Maybe that is not too bad either because, as one friend said, “Jim, you always liked attention.”

Choking on food or liquid is very common for me. I aspirate very easily, probably two or three times every day. Most of the time it is just a little bit of liquid, such as biting down on an Apple and having the juice squirt down my throat. Sometimes I aspirate on something more serious. A few months ago I coughed at the same time I was taking my medication and aspirated some of the pills. This caused aspiration pneumonia and required antibiotics to recover.

I have always been one of those people who “live to eat” rather than “eat to live.” IBM has not caused me stop eating what I like. One of those things is corn-on-the-cob.  I found the only way to eat that is with a wooden skewer stuck in each end. Even then it rolls all over the place. 

I still love to eat. I am so blessed to have people in my life to help me by preparing excellent food and helping me find a way to eat it. Life is good!

Elder Marshall bought Providencia
 September 16, 2014

In 2008 we were serving as missionaries in Santiago, Chile. Our son had sent us a document that needed a notarized signature. Annie and I went to an office that had a big Notary sign over the door. We thought that getting a notary signature would be much like it is here in the states. That’s not the way it works down there. A notary in Chile does much more than one does here. A notary does all that title companies do as well as many simple things that an attorney does.

We climbed a number of steps and entered the door to find a long line of people waiting to get to the counter. We were asked to get in line and wait for our turn.  No one seemed to notice us or to give us any advise except to wait. When we finally arrived to counter, we showed the clerk the document that needed to be notarized. She had us sign documents and told us to return in two hours to pick them up again. This seemed very strange to us but we realized we had no alternative.

Annie, a diabetic, was suffering from low blood sugar and could not wait two hours. I told her to go on home and I would wait for the document. She took a taxi home.

A couple blocks away from the notary office was a bookstore. I went in and browsed for the two hours. I bought a book and then I headed back towards the notary office. At that time I was still walking using two canes and foot/ankle braces. 

I was doing fine until I made a lateral move to the left to avoid some garbage cans. My left knee gave out and I went sprawling on the ground. I knew I would not be able to stand up without help. From the ground, I looked around to see if anyone had seen me fall. Two men ran towards me and helped me to my feet. They asked if I was okay and if I needed a ride. I assured them that I was fine, thanked them and walked away.

I entered the notary office and all of a sudden I received a great deal of attention. One of the clerks quickly came to my side and led me to a chair. Immediately my documents were produced, I paid the fee, and left to catch a bus back home.

When I entered the apartment, Annie had her back to me as she was working in the kitchen. I mentioned how much better the service had been at the notary office when I returned to receive the documents than we received when we left the documents. She turned around and looked at me and began to laugh. She said, “No wonder. Go look in the mirror.”

When I looked in the mirror I had to laugh too as my face was covered with scratch marks, dirt and garbage. All that had happened when I fell but I didn’t know it. No wonder I received such great service. 

 By the time I went to the Temple to serve the next day, the dirt was gone but the scratch marks were still there. One of the workers asked me what had happened and I told him I had fallen on Providencia.  He announced to the other workers that Elder Marshall bought Providencia.

Apparently that is a common phrase down there. When someone falls on the street, they bought that street.

Driving with IBM
September 18, 2014

After ordering my power chair (I have been in my wheelchair for 4 ½ years.) but before we received it, we knew we would need an automobile that would accommodate it. We looked online, in various cities and finally found one we wanted in Portland, Oregon. The dealer there suggested we buy it through the local dealer in Boise, Idaho, as we would be getting our service there. So, we bought the same car we wanted through the dealer, Access Vans, in Boise, Idaho.

The next problem was how to pay for it because we were on a limited budget. Because I was still working, Idaho Vocational Rehab was willing to pay for the conversion but we still had to purchase the minivan. Chrysler built our Town and Country minivan and Braun did the conversion for wheelchairs. The cost of the conversion was half the cost of the total car. 

Town & Country minivan with ramp down
Height of van helps me not bump my head
I can activate the door of the minivan from my key. The door opens and the ramp for the wheelchair drops into place. The side of the car with the ramp kneels (lowers) as the ramp comes down. The  height of the minivan is 2 ½  inches higher so I don’t bump my head as I enter the car.

The driver seat of the car has been removed so I can drive while seated in my wheelchair. There is a bolt hanging down from the bottom of my wheelchair. As I drive the wheelchair into location it locks in place so the wheelchair cannot move. The wheelchair has a seatbelt, which I wear most of the time, especially when driving. When I can no longer drive, (I don’t look forward to that day.) we will move the lockdown to the passenger side and reinstall the driver seat.  From that point on, someone will have to drive me wherever I go. 

Lock-down keeps wheelchair secure
Hand control and knob
After driving the car for about two years, it became difficult to lift my foot up to operate the brake and accelerator. At that time we had hand controls added. The control on the left of the steering wheel operates brake and accelerator. The knob on the steering wheel (illegal for anyone who is not handicapped) was also added to help me steer.

Owning a power chair and handicap Van is a blessing without description. I still have the freedom to come and go as I please without help. 

There are problems, however. Because the car is built so close to the ground to accommodate the ramp, I am constantly damaging the right underside of the side doors by running into curbs. Usually that just scratches the paint but a couple weeks ago I hit a curb so hard that I couldn’t open the door to get out.

It was late Friday afternoon so I quickly drove to the local Chrysler dealer. Even with four men working on the door they couldn’t open it. I was told I would have to go to an auto body shop. All of them had closed by that hour. I knew they would not be open on Saturday. I called a friend, Steve Barfuss, who owns an auto body shop but he was out of town. Hoping for help, I called two or three friends. None of them answered their phones.

I considered my options. One option was for someone to help me out of the car without my wheelchair. That would've left me stranded until Monday without a wheelchair. My next option was to stay in the car through the entire weekend. I could go to drive-up restaurants to eat. I could lay my wheelchair back for sleeping. But the unsolvable problem; I could not go for two days without going to the bathroom.

After four hours stuck in my car, I remembered one friend whose father had also been in a wheelchair with a handicap Van. I thought, maybe they have had this problem before and have a solution. I drove to my friend’s home but he was not available. His adult son was there and I explained my problem. We talked about possible solutions. Then he remembered his grandfather had two planks with a metal adapter at each end. He loaned me the planks and I drove home. With the help of my wife and my son I was able to drive out the door on the other side by using the planks.

On Monday morning they helped me re-enter the van by the same method. I drove to my friend’s shop, Ray’s Auto Body in Boise,  and one of his employees had the problem solved in a very short time at a very inexpensive price. In fact, I'm positive he did not take any profit. I was expecting a cost over $1000 and it cost less than $50. What a blessing to have benevolent friends.

Having IBM is no different then living life without a handicap. One simply has to cope with each situation. There is a couplet which I have adjusted for my needs:
 For every problem under the sun
There is a solution or there is none.
If there is one, go and find it.
If there is none, do not mind it.

Gardening with IBM
September 24, 2014

My wife is the one with the “green-thumb” in our family but I like to garden too. I can no longer stand up or get out of my wheelchair so we decided to have part of our garden high enough for me to reach. We purchased three horse feeding troughs and then raised them a l
Gardening from a wheelchair
ittle higher by placing them on cinderblocks. We have been using these raised bed gardens for three years now. We love them.

In the spring I am so anxious to get outside and get things planted. The weeding is a little bit more difficult and I am sure my wife pulls weeds when I am not looking.

Horse trough converted to garden
We irrigate with a soaker hose set up on a timer. The timer also controls the watering for all the rest of the lawn and garden. All I have to do is set the timer for the number of times per week and the number of minutes each time. Holes have been drilled in the bottom of each trough to drain excess water.

This year we have harvested radishes, peas, potatoes, strawberries, tomatoes and rhubarb from my raised bed garden. My wife still picks tomatoes and brings them in almost every day.

The biggest problem for us in gardening from a wheelchair is the grass I bring in the house on my wheels. Thankfully, we took out all the carpet and put in hard wood floors. So, it is easy to use a dust mop to pick up the  grass. In fact, I can dust mop from my wheelchair.

Difficulty swallowing (dysphagia)  and IBM (Inclusion Body Myositis)
October 19, 2014

In writing about this subject, I am not trying to “gross out” my friends and family but rather inform others who might have or know someone with IBM. I wish I had known what was ahead for me better when I was first diagnosed. So, if this helps someone else, I am be deeply pleased. 

Some, me included, with IBM suffer from difficulty swallowing (dysphagia). Food would get caught in my throat and wouldn’t go up or down. I would cough and sputter and look like I was dying. At first, when that happened to me, I often thought I was dying. I will describe one of our experiences.

We were traveling home, after visiting with our son and his wife in California. We were driving through the city of Salinas when we decided we wanted to eat. We were driving by Wendy’s and pulled into the parking lot when I noticed a Mexican restaurant. My wife wanted to go to Wendy’s and I wanted the Mexican restaurant. I finally prevailed.

I’d only taken one or two bites when a clump of food caught in my throat. I couldn’t get the food to go down or up and felt that I couldn’t breathe. I panicked and began to cough and to choke. My wife could tell by looking at my eyes that I was terrified.

Three people (EMTs) seated at another table quickly came to my aid. As they started to help me, a woman at another table stopped them saying, “I'm an ER nurse. He is coughing so he is still getting air. Just help him to relax.”  Once I calmed down and relaxed I was able to dislodge the food in my throat. We felt it was a wonderful blessing to come to a restaurant with three EMTs and an emergency nurse. We ended up using the knowledge, to relax, many times during the next two years.

The choking became such a problem that my doctors at the IBM clinic had me go through a swallow study. With the results of that study it was determined that I would have surgery on my throat. That surgery was very successful and I was able to swallow better after that. There was a side effect of the surgery which caused food to taste like metal for a period of time. The doctors told me that would pass after two months but it actually took two years.

I began having problems swallowing again after three or four years. The problem was different in that I would aspirate. As I was swallowing, sometimes something would get sucked up into my air passage. I asked my doctor if I needed to have another swallow study. She answered, “That depends on what you're going to do with the results of the study.” I asked her what she meant and she said, “The next step would be for you to eat through a stomach tube. Are you ready for that step?” When I answered negatively, she replied, “Then we don’t need to go through a swallow study.”

I aspirate on a regular basis, perhaps a couple times every day. It could be on saliva or even the juice from a bite of an apple.  Sometimes it is more serious. Once I aspirated while taking my pills. I coughed just as they were going down and some of them were sucked into my air passage. This aspiration caused pneumonia. For that I was prescribed an antibiotic. I now keep antibiotics on hand for the next serious aspiration because there will surely be more.

Most people do not die of IBM but of some other cause. One of the most common causes is aspiration pneumonia. So, I’m pretty careful when eating or drinking and I have antibiotics ready in case of a serious aspiration.

Swallowing difficulties are sometimes common with people who have IBM. It is just one of the adversities with which we learn to cope. At first it was scary for me but now is just one of the things I live with. It probably bothers people around me, when I choke, more than it does me.

 All of us have adversities with which we have to cope.  Most of us, if we could choose, would choose our own personal problems over those of someone else.  If we can relax and learn from our adversities, they can be as acceptable to us as a pair of shoes, after they have been “broken in.”

Insurance, Hospice and IBM (Inclusion Body Myositis)
Thursday, November 27, 2014

It is Thanksgiving morning and I have been contemplating the things for which I am thankful. Besides the obvious, my family and friends, others who came to my mind, were my caregivers provided by insurance. I am truly thankful for the insurance I purchased before I had any idea I would need it.

First, I purchased disability insurance to continue to provide me an income if I became too disabled to work. The second, was long-term care insurance to provide caregivers during prolonged disability. The third insurance, was life insurance to provide income for my wife after my death.

I honestly thought I would never use disability insurance or long-term care insurance. Being an insurance agent, my thought was if I really believe in this insurance and am trying to sell it to others, I really should have it for myself. I don't think anyone ever believes he will become disabled. Even after being diagnosed with ALS and then IBM (Inclusion Body Myositis), I did not consider myself disabled. I could still meet with clients, sometimes driving long distances. I did find that I needed to take numerous naps in my car during the day because of fatigue. A friend of mine, Carter George, who had a very similar disease explained to me that I was indeed disabled and needed to file a claim on my disability insurance.

There was a long questionnaire I had to answer. My medical doctors needed to send in their records on me. I did have to admit that I was not working at full capacity, more like 50%.

I was actually shocked and cried when I received the letter from my disability insurance company telling me I was definitely disabled because I was obviously in denial. They provided me with a good income for three years, until I reached the age of 65. I was able to keep working on a limited basis and still receive my disability insurance benefits.

I had also purchased long-term care insurance, which would provide money for an assisted living facility, nursing home or in-home care.

In various visits with my medical doctor, she helped me understand about the decline in my being able to take care of myself. Realizing that my wife was wearing herself out taking care of me, Dr. Massart asked if I had long-term care insurance. She also asked if it would provide in-home care.

I had read in many articles about Inclusion Body Myositis that palliative care would be appropriate. In the discussions with my medical doctor, I asked her about that type of care. I was shocked when she suggested I had passed the point of needing palliative care and really needed hospice care. At the same time she suggested it was time for me to activate my long-term care insurance.

In my mind, I had always considered hospice as something needed during the last two or three weeks of life. Even though I had had a recent bout with aspiration pneumonia, I had not considered myself being close to dying. She explained to me that I could easily die within the next six months but it was not necessary to do so to qualify for hospice.

I am mentioning hospice in this section about insurance because hospice is provided for everyone who has Medicare insurance.

I was evaluated by a team of hospice people including a nurse, a social worker, and a spiritual advisor. With their evaluation and that of my medical doctor I began using hospice services. It started off with a bath aide coming  three mornings per week to help me shower and get dressed. That gradually increase to helping me shave, wash my hair and other things. She now comes five mornings per week to help me get ready for the day.

My social worker helped me fill out the paperwork necessary to file a claim for my long-term care insurance. With the evaluation from their nurses along with that of my doctor and hospice, I quickly qualified for in-home care.

My PCA (Personal Care Assistant), provided by the long-term care insurance, started coming each evening to help me get ready for bed. That too has gradually increased to where she is helping 4 to 5 hours every day. Besides my personal care, she helps with housekeeping, food preparaton, typing and anything else that she sees that needs to be done.

My life has become so much better with the assistance of my hospice team and my PCA. However, the person who has benefited the most from the help of all of these people is my wife. Frankly, she was wearing out trying to take care of me. One of my clients, a retired nurse, reminded me of the large percentage of family member caregivers  who wear themselves out and die before the person for whom they are caring. My wife is so much more healthy and happy now that she has so many helpers to take care of me.

So, my making the decision to buy life insurance, disability insurance and long-term care insurance before we needed them has been such a blessing in our lives.  Medicare, which covers hospice, is provided to everyone after age 65. The life insurance will provide the income my wife needs after I die. The disability insurance provided me extra income as my ability to work slowed down. My long-term care insurance is providing a PCA to help with the daily work around the house. My hospice team is providing the support we need in the last period of my life.

Even though I am on hospice, in my mind I am not close to dying. I asked one of my hospice team members how long some of their patients had been on hospice. (Remember, I always thought you resort to hospice the last couple weeks of your life.) She said that some of her patients have been on hospice for more than two years. Some die within six weeks. One of her patients died the very same day she started on hospice. I feel sorry for her and her family because hospice would have been so much help leading up to that final day. I’m also reminded by my hospice team that they will continue to give support to my wife and family for up to 13 months after my death.

I asked about the longest a person had been on hospice. One of my team said they knew of a person that had been on hospice for six years before dying. I have now been on hospice for seven months and will try to break the six year record.

Why I am grateful to have IBM (Inclusion Body Myositis)
Feb 2, 2015

On my 73rd birthday, last month, I received a hand written card from my sister. She included this line, “When you got this new lifestyle a whole new you emerged. A better you!” I think she is right. I believe IBM has helped me to become a better person. I believe it has helped me to appreciate life and all the beauty that surrounds me. It has slowed me down so I have time to enjoy life.

About the time of my birthday, I gave up driving, which was one of the most dreaded decisions of the last few years. We replaced the driver’s seat and others drive for me now. I have really enjoyed driving my car while seated in my wheelchair. It has given me a sense of freedom, which I cherished. A little over a year ago, we drove to California for the funeral of my brother-in-law. It took us three days to drive home because of my fatigue. At that time I gave up driving long distances.

I knew it would not be long until I would have to give up driving completely. I thought it would be terrible, but it has been just the opposite. It is very comfortable to sit back and enjoy the scenery without the tension of driving. My PCA, (personal care assistant), takes me where I want to go. Usually it is to go grocery shopping, to the temple, or sometimes it’s just for a ride. I am enjoying the beautiful scenery that I really never paid that much attention to before.

My disease has put me in a power wheelchair permanently. That wheelchair attracts a lot of kind, cheerful people, especially children. The children want to know what my chair is and how it works. I have so much fun showing them all the buttons and the joystick. Of course they each want to touch it and so I show them how to toot the horn. I do have to be careful that they don't grab the joystick and run over their toes. Mothers and grandmothers alike have thanked me for being so patient with their children and showing them my wheelchair. My old me probably would not have taken time or had the patience.

The children are such a joy to me. Last summer, when I wanted to go for a ride on my wheelchair through the neighborhood, one of the little boys asked me what I was doing. I said, “I’m going for a walk.” He looked at me in puzzlement as he said, “You can’t walk.” I laughed till I had tears in my eyes.

Everywhere I go, cheerful people quickly come to my aid. When I arrive at the doors of the church, even little old ladies rush to hold the door open for me. When I am grocery shopping and the item I want is on the top shelf, all I have to do is glance at it and someone offers to help. When I thank them, most often they act as if I had done them a favor by allowing them to help.

I am so grateful for my hospice team and my caregivers. All of them make my life, not just bearable, but really enjoyable. They are probably causing me to live longer. They also make the life of my wife, my main caregiver, so much easier and enjoyable. With their help, even our relationship has improved. 

I love hugs and I get hundreds of them whether from family members, people in church, or my caregivers; sometimes from complete strangers. Many of the people who greet me do so with a hug. I don’t believe that would happen if it were not for my disease and my wheelchair.

All the kind, cheerful people have caused me to also want to be kind and cheerful. There is no reason to be rude or unkind, even though those were means I sometimes used in the past to get things done. It makes me sad to think I used to act that way.  I find I am even kind and patient, speaking with a smile on my face, while on the telephone. Only this disease could have helped me make this change.

I have had to find new ways to serve others. Because I cannot help physically, it has become important to help them socially, emotionally, and spiritually. It is amazing how many people have come to me to ask advice in one of those three areas. That is a kindness on their part to give me the opportunity to serve. 

When I was first diagnosed with ALS and then later IBM, I went online and read everything I could find. It scared me to death and left me depressed. The more I read the more I hated what was before me. My wife, Annie, told me to stop reading about it. It reminds me of the man who read so much about the dangers of smoking that he gave up reading. There is no cure for either ALS or IBM, so I had to quit reading, at least reading negative stuff. I don’t know who will read this, but hopefully it will give others with IBM or other debilitating diseases, hope. 

I would not wish IBM on anyone, but I am grateful for the changes it has helped me make in my life. If I had a choice of not having IBM and being who I was, or having IBM and being who I am now, I would choose the latter. Of course, it would be even better to not have IBM and be the new me.

These are just a few of the reasons for my gratitude for IBM. Perhaps I will think of others later and when I do I will add them. In the meantime know this, I love my life!

Hey, I'm Still AliveOctober 3, 2017

One of my friends mentioned not seeing anything on my blog lately. She said she found it interesting and heartwarming. It has been over two and a half years since I have posted and I am still alive. Much is the same and much has changed. I need much more help to eat and I am careful to pick foods that I can feed myself. I need much more help grooming. There seems to be increases in fatigue and pain. I seem to contract more and more infections. 

I thought I would be embarrassed to have people see me eating or being fed in a restaurant. Yesterday we went to a Mexican restaurant, which serves chips, salsa, and bean dip. I love them all but am no longer able to pick up chips, so my wife, Annie, automatically fed me across the table. I can still use my special utensils, so I can eat the rice, beans and meat awkwardly.  It all seems so natural after the first few times that it doesn't bother me at all.

For a long time I had an Easy Pivot Lift to move me between bed, toilet and power chair. The care-giver had to use leverage, her weight and strength to lift me. Some of my aides weighed just over an hundred pounds. They would have to take a running leap at it. That was getting more and more difficult, even for those with a little weight. 

I had a ceiling lift installed that has a track that runs from my bedroom, through a double door, into my bathroom. My care-givers put a sling on me, hook it to a strap attached to a lift motor. With a remote control they can lift me off my bed and slide me to the toilet or wheelchair. Even my 15 year-old grandson or my 18 year-old granddaughter can do it with ease. My grandchildren think it is their zip line. OK, maybe I think of it that way too. Placing me on the toilet is a little more difficult as I have a bidet on it. I have to be placed in exactly the right place for the bidet to work. Others can scoot around to find that right place but I can't.

I worried a lot about toileting before I had to have help. The worrying wasn't worth it. All my aides have been trained and make it seem so natural. Once in a while I don't have an aide so that was more difficult to accept. First it was my wife, then one of my three daughters who are nurses. One weekend my only aide was my 18 year-old granddaughter, who'd been trained by her mother, a nurse. Before she came to take care of me, I called her and asked if she was OK taking care of me. She said she was looking forward to it. I asked about toileting and her answer was inspiring. She said, "We will both be awkward together and get the job done." I love that girl. She is so sensitive and caring.

One of my hospice aides is very careful to keep my nails trimmed. One of my home-care aids makes sure my nose and ear hairs are properly trimmed. She also bears the weight of my electric tooth brush while I guide it around. 

I still like to go for rides on my power chair around the neighbor hood, the Caldwell greenbelt or the Garden city greenbelt. Sometimes Annie brings my old scooter and rides with me. Here is a picture of my homecare aide accompanying me on the Greenbelt when the water was high this spring.

I have had a number of care-giver, both with hospice and homecare. If they stay very long I get to know them and they know me. I develop a love for each of them. It hurts when they have to leave and I go through a sort of grieving process, but I like that better than never getting to know them.

What I enjoy doing most of all is counseling those who ask for it or helping with their homework. That happens mostly after they have gone on to school or other jobs. I pray every day for someone to help. That is what keeps me going. 

I go through a lot of pain, itching, anxiety and frustration, but I have found that none of those things distract from happiness. If anyone asks how I'm doing, I usually answer, "great" or "fantastic" because Jim Marshall really does feel that way. 

I hope this is helpful for those of you who have IBM or care for someone with it. My family says it helps them too. Please leave a comment if this helps you.


Cinda said...

Good insight dad. Keep this up. It can be helpful to others, but it also helps us to understand what you are experiencing. Love you!

Doug & Karen Ancerson said...

Karen Anderson said, Very interesting to help us understand what you are going through. We knew nothing about IBM before. Think of you often, love you.

jcrawford said...

Really interesting info, especially for those of us who have known since you invincible. All you are dealing with and still smiling I see.

suelly said...

This is great Dad! Keep it up.

Jim Marshall said...

I really appreciate the comments. Writing is one of my favorite activities and it becomes so much more fun to know someone read it. Life is great and you make it all the better.

Cory Smith said...

I love following your blog Jim. Makes me feel like we're still working together.

Unknown said...

Very nice post, impressive. its quite different from other posts. Thanks for sharing.

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Ken Ross said...

I too have IBM. I was diagnosed about 3 years ago. I read with interest how you are coping with IBM, but are you doing anything to try to beat the disease? Your case is more advanced than mine. I am trying stem cells to replace lost muscle. It is expensive and it is still early in the process, but I am starting to see some benefit. If you are interested I am happy to share more.

Anonymous said...

Dear Papa. Your block is long and so well written that once I started reading it, I could not stop until I had digested every word as you describe your journey through the different stages of IBM. I was diagnosed with IBM about 2 1/2 years ago. After the diagnosis suddenly past incidents made sense. So far, I have remained very positive and this blog of your has just help me to be even more positive.
Thanks for sharing your experience. I hope to try and start my own blog, when I figure out the proper way to do so. If possible, my first link will be to yours. Thanks again.

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Jim Marshall said...

I am no longer trying to do anything to cure the disease. Many people have approached me with cures. I don't try them anymore. What I do is cope with the symptoms. I treat pains, anxiety, itching and depression. I have found the best way for me to feel better is to help others and try to lift them from their depression. I have also helped students write their essays or research oars. Not only do I receive hugs but give them, as much as I can without strength to lift y arms very well. Thanks to all of you for your kind comments.

Nina said...

Thank you for continuing the blog ...... reading it feels like we're still in touch. :-) Your positive and cheery attitude is amazing, and never changes.

Anonymous said...

We all learned in Kindergarten that life is not fair. But we also learned to recognize injustice when we see it and I feel it is necessary to reveal an injustice about which very few in this country will ever know.

This injustice will affect thousands like me. You see, I am a victim of the disease called Inclusion Body Myositis, (IBM), a serious muscle wasting disease. IBM is similar to ALS (Lou Gehrig's Disease). While ALS attacks the central nervous system, IBM attacks the skeletal muscles. IBM usually runs its course in 15 to 20 years while ALS is terminal in 3 to 5 years. I, like thousands of ALS and IBM patients, am now wheelchair-bound for the rest of my life. Both conditions are terminal but we all must come to terms with that fact. But a recent development in corporate America has added an intolerable insult to our lot in life.

Several American biotech companies benefited from federal grants and donated money generated through donations, including the Ice Bucket Challenge. One of those biotech companies is CytRx Corporation based in Los Angeles, CA. With those donated funds and federal grants, CytRx developed a drug called Arimoclomol. That drug is currently the only known potential treatment for IBM and ALS. Early investigations of Arimoclomol showed it was safe and demonstrated clinical improvement in Phase I and Phase II trials for both IBM and ALS patients.

With the promise of success, Arimoclomol was sold for millions to a Danish biotech company called Orphazyme based in Copenhagen, Denmark. To those of us with IBM and ALS, the only known treatment for our condition being sold to a company in a foreign country after it was developed using US taxpayers' funds goes beyond unjust. It seems criminal. For a foreign company to complete Phase III trials and acquire FDA approval for use in the US could be another five years. Many of us with ALS and IBM wonder if we have that long. If this drug was still in the hands of a US company, victims have the opportunity to apply for compassionate use of the experimental drug. That option was lost when CytRx cashed out. Many of us have tried to reach out to Orphazyme Biotech about the possibility of compassionate applications or to simply find out about progress on FDA approval. I do not know of a single call or email that has been returned or answered.

American taxpayers and donors expect a modicum of accountability. We all hope people and corporations will do the right thing for the greater good. But this is one injustice that can have quality of life ramifications or even become a matter of life or death for thousands. But that hope for greater good and accountability in this case was sold overseas.

To whom can we turn for help?

On a brighter note Orphazyme plans now to release Arimoclomol to market late 2020.

Anonymous said...

My mother has IBM. We appreciate you sharing your story.

Unknown said...

Hi Mr. Marshall, My name is Dolores and my husband, Richard has IBM also. He was diagnosed in 2008 , he was 73. We enjoyed very much reading your blog. Your story is very similar to ours. We hope that things are going well for you.

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Unknown said...

Hello Jim, I started having significant IBM symptoms in 2011 but didn’t self-diagnose until serious swallowed issues developed in 2016 and wasn’t conclusively diagnosed until my muscle biopsy last fall. I am currently trying several nutritional substances and also just started using CBD oil from the cannibus plant (not hemp, which I understand to be inferior for medicinal use). I am a non-drinker and have never used any type of cannabis prior to this (I am the kind of person who barely uses pain medicine when it’s prescribed because I respect its highly addictive properties and so I always err on the side of caution).

I consulted a doctor in California who prescribes cannabis for mitochondrial diseases (such as IBM) and he told me how to make medicinal oils from the recreational cannabis products that are legal to buy & use in my home state. I was nervous to try them but was told they would not likely have any psychotropic effects due to the micro-dosing and due to the fact that the small amount of THC would not be exposed to heat. I am so glad I tried it, as I have had no ill effects and no psychotropic effects at all. However, after only a few days of use, I noticed that I could stand up from my chair easier. I thought maybe my walking was a little better too but wasn’t sure. Next I noticed that I could breath a little deeper—my diaphragm felt like it was waking up and starting to work better. Over the next few days, I could pick my feet up instead of shuffle, I could raise my arms better and I could grasp with my fingers a little better. Only someone else who has experienced years of daily LOSS of strength would be able to understand the joy and surprise when that trend not only stops but starts going in the opposite direction. One night, after finding it so much easier to stand up and walk to the bathroom, while half-asleep, I found myself humming an old Keith Green song “Lord I’m gonna love you” (Christian artist) from my teenage years and believe it was my spirit bubbling up with praise for the miracle of healing happening in my muscles.

If you are in a state that allows medical cannabis use, please investigate it. I used to practice law and I am careful & cautious by nature, so I did significant research before trying this and anyone with internet access can do the same—and you can schedule a phone consult with a doctor who prescribes cannibus for mitochondrial disease, like I did (I’m not a doctor or health professional). What got me started was “the sacred plant” video series, which may still be free on YouTube.

If anyone wants to connect with me, I’m happy to share more. I can be reached at

Blessings of healing to everyone!

Anonymous said...

Enjoyed reading all of this information. I was diagnosed with IBM in spring of 2018. Had experienced falling and other symptoms for nine years before that but none of the doctors I saw were familiar with IBM so it took a while to get to the right place.

Jerry said...

Great blog. Your purpose for your blog diary is similar to the reason i author my IB MYOSITIS Youtube educate the IBM'ers that follow us.

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