Life With ALS.com
+ Diagnosed Aug 2005
+ Bipap March 2007
+ PEG July 2007
+ Trache and Vent July 2008
Still Living, Loving & Laughing
April 2010. Questions from an Occupational Therapist student.
I am going to share your website with my class, so they too can learn more.
I have some questions about your day-to-day life.
Q. I understand that woodworking and boating were huge hobbies of yours. What are some of your new hobbies that you are able to do?
A. I am a moderator for one of the ALS Support Forums. It keeps me busy.
The only hobbies I am able to do are things involving a computer so I spend time on ALS Forums offering support and council to other people with ALS. Since I am one of the very few who have a tracheostomy and ventilator I try to offer help answering questions regarding quality of life.
I also spend a lot of time watching TV and have recently started to watch hockey again.
Q. What activities are most important for you to be able to partake in?
A. I have lost my ability to partake in the activities that were important to me so now I try to be an advocate for those living with ALS. I try to offer hope, help and encouragement through support groups and forums. The most important thing is to spend as much time as possible with my wife, children and grandchildren.
Q. What are some activities you can do independently? This could be cooking, eating, anything.
A. The only activities I can do independently are using my computer after I have been setup. There are no other activities I can do without help.
Q. Have you worked with an occupational therapist? If so, what was your experience like? Positive/negative.
A. I have 2 OT’s that I work with. One from the ALS Society and the other from our local health district. They have both been fantastic. We can’t get any equipment without one of the OT’s putting in a request so they pay us a visit and see what we need.
They also offer suggestions on how to make life easier, how to use the equipment and work with us on how to make things more comfortable.
Q. Is there anything you wish you could have received or been told from health professionals you have worked with? Anything that would have helped you or made things easier.
A. I am a researcher so did my own research and was ahead of what the professionals could tell me. It did not take long before I knew as much, or more, than they did about what I needed to do.
Q. I understand you use a power wheelchair. What other types of adaptive equipment do you use?
A. There are a lot of adaptive devices that I use since I can’t do a thing for myself and don’t have the use of my legs and limited use of my hands.
I have a lift system in the bedroom and bathroom to transfer me from the wheelchair to the bed or toilet or shower.
I use a headmouse and a special mouse to use my computer. They have big external buttons for the click functions.
I also have a device that controls TV, VCR and lights.
Q. Have you made an modifications to your home to make getting around and doing things easier?
A. We have a home that is all on one level so getting around is not a problem. We added a handicapped bedroom and bathroom. If you go to the “Content Index” and look for Bedroom/Bathroom you can see what we did. Other than that there is nothing more we had to do. We did move out of our two story dream home and purchase this one to make things easier.
Q. How do you get around to places outside of your home?
A. We have a handicapped van that accommodates my power wheelchair so that enables us to get out and go places. It is easy to go places that we want.
Q. How has ALS impacted your social life?
A. It has impacted in a big way. We really do not have a social life as people have disappeared. It is amazing to me that good friends no longer come around. People don’t seem to be able to cope with seeing me. They are too uncomfortable and don’t know what to say so they stay away. The only social life we have is with other people who have ALS and their caregivers. We have made some amazing new friends from this group.
Q. How has it impacted your family and family life?
A. I have an amazing family, we are still close and they try to help as much as they can. They don’t like what is happening to me and it upsets them but they deal with it and are very loving.
Q. Do you have a caretaker?
A. Yes, I have my wife and son as caregivers. We also have just recently hired 2 more caregivers that can fill in when necessary. Since I have a trache and vent I cannot be left alone. I also can’t do anything for myself so need someone around to help if I need anything.
Q. Do you or your family members have any safety concerns for you?
A. I guess the primary concern is the possibility of a ventilator malfunction. Sometimes my circuit (air hose) comes off and I have no way to get it back on. I also do not have any independent breathing time so if the circuit comes off I only have a couple of minutes before I am a goner. There really are not any other concerns because I am no longer walking or doing anything without help.
Q. Do you have any difficulty with your sleep routine and falling/staying asleep?
A. No, I have no trouble with this. We have modified an UltraMatic bed with a ROHO mattress. This is comfortable enough I do not have to be turned all night so sleep all the way through. Sometimes I have to be suctioned in the middle of the night but other than that I sleep right through. I know I am very fortunate as a lot of people have extreme trouble during the night and have to be turned every few hours.
Q. Do you have any difficulty with eating?
A. Yes, I have difficulty. I have had a PEG (feeding tube) for 3 years now. I can still eat a little by mouth but am choking more every day. Before getting my trache and vent I was using the PEG for most of my feeding because of choking. After getting my trache and vent I was once again able to eat without problems. This is very rare but I was very thankful, doctors have no idea why! The big concern is aspiration so I am trying to be very careful.
ADDED THOUGHT:
In my experience the biggest challenge for the ALS patient and the OT is to make everything as comfortable as possible. Once all our muscles atrophy there is no longer any "padding" so it hurts to sit or lay down. Our bones stick out with no flesh to cushion us. This creates a huge problem to find comfortable seating or a bed. I have been fortunate in finding ROHO cushions and mattresses, they have been a life saver. Once you get the pressure correct they are wonderful, but it does take time adjusting the pressure before they are.
Another thing you should be aware of is Emotional Lability that most people experience. This is the uncontrollable and inappropriate laughing, crying or anger. It is very embarrassing for the patient and caregiver. It is likely the most misunderstood symptom of ALS. As I have said, this is an uncontrollable thing for the person with ALS. There are drugs that can help control this, I am taking Citalopram. So, the challenge for the caregiver is to not take it personally, it is not a personal attack.
Remember, there is nothing wrong with a persons hearing or their mind. We are the same person, intellectually, that we were prior to ALS. Just because we are in a wheelchair and can't talk does not mean we are stupid or deaf. A small percentage of ALS patients develop dementia which creates other problems, but the vast majority are no different than they were prior to ALS. ALS also does not affect our 5 senses, sight, hearing, touch, smell and taste, as a matter of fact they seem to be heightened.
