This blog is to share my story of living with FTD/MND. I was diagnosed with FTD in February 2013 and then with MND in June of 2013. I am fortunate to be involved in a family business and am still able to work on a limited basis. This blog will contain stories about my family, my business partners, staff and friends.

Friday, December 26, 2014

Family Visits and Happy Holidays

I hoped everyone had a great Thanksgiving and a very Merry Christmas. Since I last posted, I have had a few doctor’s appointments, got a new motorized wheelchair and went to a few Christmas parties. Besides being busy at work, and having my family visit me, I am ready for some downtime.

In October, I wanted to get a motorized scooter to help me get around the Funeral Home. We have a 20,000 square foot building and it doesn’t take much to wear out my legs, so Cindy contacted my insurance co. and asked them about getting me a scooter. The insurance co. works with certain companies, so we picked one and set up an appointment. When we went in they explained that they would do an assessment and would then recommend what type of equipment would work for me. After a while, they came back and said the insurance co. doesn’t want to give you what you need now, but what I will need in the future. I guess that means they don’t have to continue to buy equipment as my needs change. So, the recommendation for me was to get a customized motorized wheelchair that cost $13,000 instead of an $1800 scooter. I took delivery and was given instructions on how to use it. So now, I race up and down the hallways and hit the back part of the building at 8 mph. It really does help with the weakness in my legs and I am grateful for it. I took delivery at the Funeral Home and was a little surprised at some of the reactions I got from some staff members. Everyone was happy about the freedom that the wheelchair gave me, but some also saw that my disease has progressed further along and the reality of it bothered them. It, also, bothered my mother when she was here to visit and she didn’t want to see me in it.

The last part of October, my older brother, Monty, came and stayed for three days with me. We had a good time, were able to talk about times when we were growing up and also spent some time talking about my illness and what would possibly happen in the future. We laughed and cried, we both had a good time. The first part of November, my mom, Alberta, and three sisters, Helen, Jean, and Jan, came to stay with me a week while Cindy was out of town for work. I think it was good for my mom and sisters to be around me on a daily basis to see what I have to go through and a few of those days were not good days for me. It allowed them to understand better what is going on and I am grateful that they could come. My mom is 87 years old and this was the first time she had flown on an airplane. My oldest sister also flew for the first time. They both enjoyed the flight and now I feel better that if they want to come see me, or if something happens to me, it is only a 1 hour flight. I want my family to know that I love them all very much.

In November, I went to see a Pulmonologist and a Speech Therapist for some breathing and swallowing issues. My Neurologist wants to be sure that there are no underling issues causing my breathing problems except for my MND. At the appointment, the Pulmonologist confirmed to me that everything is fine except for the breathing issues caused by the MND. We talked about non-invasive and invasive breathing equipment and what I will want to use in the future. That is something I have thought about and talked with Cindy. I would use the non-invasive equipment, but would stop short of using things like a ventilator and trachea tube. To some people this may seem to be giving up, but the people who know me can’t see me tied to a bed to be kept alive with tubes, either. The Speech Therapist was helpful in letting me know about different cookbooks that are available for people who have swallowing issues. I have started to have coughing and choking spells when I swallow food or drink the wrong way.  I will have to work with my doctors on the best approach to take when I have one. I, also, applied for Social Security Disability and will let you know the outcome.

I go back to my Neurologist in January for my three month appointment and more Botox shots for pain. I will try to post after that visit to let you know what the latest prognosis.

Hal

Monday, October 27, 2014

Light in Our Darkness

As Hal has mentioned he has been keeping us all up to date at the office on what has been happening with his appointments and each step of what to expect. You can imagine that it has been difficult for everyone, but something truly amazing happens everyday that Hal is here. He is our light, our laughter. How he does it I will never know.

Today Hal looked so tired, I like to think part of that was from a good weekend but I know so much more of it is from the illness. Still that doesn't stop him. He comes in and is the brightest person in the room, and when he is having a hard time he still keeps a sense of humor. I live everyday in awe of the person that he is, the person he can still manage to be even in the face of all he has going on.

Just know Hal that all of us gladly shoulder whatever part of your burden that we can if it means having you with us. We love you.

Shelby

Saturday, October 18, 2014

My Brain Is Too Tired To Think Of A Post Title


I know that it has been several months since I posted on my blog and it seems that I wanted to post, but I just couldn’t make myself do it. I guess I can blame it on the FTD. A lot has happened during this time and will try to bring you up to date.

You might have noticed on my blog that even though I hadn’t posted for a while, a couple of my co-workers did. I want to thank Shelby and Katelynn for sharing their thoughts on how working with me has affected their lives. It seems rare that a person who has FTD let alone MND is able to work at all. I feel blessed that I am able to have some place to go and try to contribute for a few hours a day. I don’t drive anymore, so I have a couple of co-workers who pick me up on a daily basis, then once I get into work, the whole staff becomes my caregiver. Because of the type of business we are in, I feel that I add more stress on them because of what they do for me. For that I want to thank them publicly for doing what they do. We have, almost from the beginning, kept the staff informed on what was happening to me. Sometimes I think it can be a little overwhelming for them to have to hear about what’s going on with me and also watching what is happening to me on a daily basis. I want to tell them, again, thank you for everything you do for me and I love you all very much.

I have had several different doctor’s visits and test done in the last few months. I have started to have some trouble breathing, so I had a breathing test done to see if I had any issues and also to get a base line so that as things progress they have a reference point. The test showed that my lungs are in good shape, but it found that the muscles in my diaphragm are starting to weaken. The outlook on this situation is that at some point I will need help with a portable breathing apparatus. I have begun having swallowing issues and have been referred to a Speech Therapist to see if there is anything they can do to help with this. I have started to use liquid forms of my medicine, capsule to make it easier for me to swallow, and eating smaller bites of food and chewing longer. In the past couple of week, I received 30 Botox shots for pain and again the shots were placed in my upper legs, shoulders, upper back and both sides of my neck. I also received a new prescription to help with my pain in these areas and will give you updates on this later. I appreciate the great medical care that I get at the University of Colorado and am glad that I live close enough to access it.

I want to thank all of the family members, co-workers, friends that did the Ice Bucket Challenge for ALS. The fact that you took the time and effort and the donations that you made on my behalf was overwhelming. I looked at the ALS association website and they received 115 million dollars from the Ice Bucket Challenge. This money will be used for research and to give care for those who have ALS.

I will admit to you that some days, especially lately, have been a struggle. I get mad at what is happening to me and wonder how long I can keep this up. But I continue to fight on and ask for your prayers and support. Thank you for all that you do in supporting me.

 

Hal

Tuesday, September 2, 2014

Working With Hal

 
I’ve been trying to decide what I wanted to write and what message I wanted to give you. I do know that I want to let you know how much you mean to me. I’ve always known what a nice person you were and that I liked you based on our limited interactions at the Coroner’s office. What I didn’t know, was how fast and how much I would get attached to you. I go through multiple emotions a day ranging from happy, to sad, to angry. I’m extremely happy that I’ve had the chance to get to know you better and have you be a part of my life. There are so many times when I come to work and the stress seems to overcome me but then you get there and just make me smile. But on the days you don’t come in to work, it really upsets me because I know it means you’re having a bad day. It makes me feel so helpless.

There is also a lot that makes me angry. I’m angry that it has to be you, when there are so many others more deserving… And even though I know that sounds horrible and I shouldn’t wish bad things on people, I don’t really care. If I could take this away from you and give it to someone else I would.

The other day my step-son said something about the ice-bucket challenge and when I told him he needed to make a donation if he wanted to do it he had no idea what I was talking about. He didn’t even know it was to raise awareness for ALS, he just thought it was a fun/funny thing to do. I found myself so frustrated with him that I had to leave the room for a minute before I could come back and explain to him what it was all about. And I know that there are so many people out there that think the same thing, they are just participating because it’s fun. It makes me so mad. I know I’m being unreasonable and that this has raised more money for research already in the last few months than last year altogether but I can’t put the anger aside. Maybe I don’t want to let the anger go because then the sadness gets in. I think I’m just better at being angry.

I do want to you know how much I’ve truly come to love you. And if there is ever anything I can do for you I’ll be right there.

Katelynn

Friday, August 29, 2014

Working with Hal

My name is Shelby and I work with Hal. Well, really it is more than that. Hal is also my brother. He is married to my sister Cindy and in every way a brother, but he asked us to post on here in the capacity of what it is like to work with him daily. To be honest I don't think a single person in our office can think of Hal as anything other than family, whether that is true or not. Working with Hal has been a pleasure from the very beginning. He is our sunshine and our laughter. Amazingly even now that has not changed. I can't imagine how hard this has been for him and yet he tries so very hard to make sure that all of us are ok. 

When Hal was first diagnosed I was visiting from school and was devastated. I had to leave everyone behind to go finish and rely only on what people would tell me about how things were going, how he was doing. My heart broke not being near, but now I am and my heart still breaks. Being back and working with Hal everyday that he feels up to it is bittersweet. 

Hal is an amazing worker, boss and person in general. When he started having balance and strength problems it was a huge concern. Some of what we do can be very dangerous if precautions are not taken and being off balance can mean trouble. This led to us to trying harder to just be there and watch, which I imagine drove Hal nuts. It would never be an issue of trust or thinking he was any less capable, but how could we not worry? Still Hal has found ways to ease or worries and to still be a fantastic worker. 

I know that there are moments for all of us that are difficult. What we do for a living reminds us every day of what we will have to do,far too soon, for someone we love with all our hearts. I laugh and smile more when he is with me, even when he feels the need to bring up his own funeral plans... which he gets a kick out of doing because he knows it annoys some of us. I wouldn't have it any other way though because that is Hal. 

Overall this is probably the hardest thing many of us have ever had to do in so many different ways, but our work wouldn't  be and some day won't be the same without Hal. No matter how much pain comes with him being sick, it could never outweigh the joy of who he is and his presence with us. 

I love you my Halbert.

Sunday, July 6, 2014

Botox Shots For My MND

  I received Botox injections for my MND on June 16th and I had a total of 20 injections in my neck, shoulders and legs. The pain I was having is somewhat relieved, but I am now experiencing weakness in my legs and get fatigued easily. The stiffness in my shoulders is still there and will probably have to increase the dosage of the Botox. I was given the lowest dose of Botox and will continue to have this done for at least a year. I was off from work most of that week due to the shots and am starting to get some of my strength back. My next appointment is in October and will wait to see if I will have any injections in my legs. At the same appointment, I did have my regular exam with my Neurologist. He said that things were about the same as the last appointment with the exception of more weakness in my legs and shoulders. I think that the weakness will be what I will have to deal with in the immediate future. Cindy and I have already looked into getting a motorized scooter/wheelchair to help compensate for the continuing weakness. I want to let you know that I feel like I am a walking pharmacy and the Walgreen's that fills my prescriptions knows Cindy by sight and by her first name. I am taking 32 pills per day, 11 different medications, prescription and non-prescription and they help me with my FTD/MND. If I wasn't on this many different types of medications, I wouldn't be able to function on a daily basis. Again, thanks for reading my blog and will have another post soon about how my FTD/MND has affected my partners and staff at The Springs Funeral Services.

Hal

Thursday, May 29, 2014

An Introduction To FTD/MND

This is the first post on my blog and I want to give a big thank you to those who are reading this. I want to give a short introduction on FTD and MND. I think this will help you understand what is going on in my life.

Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the anterior temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. The hallmark of FTD is a gradual, progressive decline in behavior and/or language that often has a relatively young age at onset (mid-50s to 60s), but has been seen as early as 21 and as late as 80 years. As the disease progresses, it becomes increasingly difficult for people to plan or organize activities, behave appropriately in social or work settings, interact with others, and care for oneself, resulting in increasing dependency.

FTD represents an estimated 10%-20% of all dementia cases and is recognized as one of the most common dementia's affecting a younger population. It is estimated that FTD affects approximately 50,000-60,000 Americans. FTD occurs equally in men and women. In a minority of cases, it is inherited.

While there are currently no treatments to slow or stop the progression of the disease, FTD research is expanding, producing greater understanding of the disorders. We anticipate that this knowledge will result in a growing number of potential therapeutics entering clinical testing within the next few 
years.

In about 10-15% of patients with FTD, the disease also involves the nerve cells controlling voluntary movement, called motor neurons. When this occurs, the syndrome is called FTD with motor neuron disease (FTD/MND) or FTD with ALS.

Patients with FTD/MND may present with the same behavioral and/or language changes seen in other subtypes of FTD. In this syndrome however, these changes are accompanied by a deterioration of motor neurons that manifest as weakness in the muscles with stiffness, difficulty making fine movements, atrophy (shrinkage) of the muscles, and fine muscle twitches and cramps. Muscle changes can affect the arms and/or legs on one or both sides of the body, or the face, tongue and mouth, depending on how the nervous system is affected in that individual. As the disease worsens, more parts of the motor system become involved. Patients with this diagnosis usually experience a rapid decline in both physical and cognitive abilities. The course of FTD/MND may be as quick as 2-3 years, as opposed to the 5-10 year course more commonly seen among other FTD patients.

This information was taken from the AFTD.org website. I hope this has provided valuable insight and now you will have a better understanding of my blog.

Hal