Having ALS doesn't mean the end of traveling or one's social life; it does mean adapting. I LOVE to travel. As my ALS has progressed where and how I travel has changed.
Before ALS I went to Europe several times. My grandfather was born and raised in Switzerland so I have a special fondness for that place. My grandfather's family still lives in there. When I have been there I feel like I am home. It just feels right. I have been there three times and wish I could go back but Europe is not handicapped-friendly at all. I am very sad about that.
I have been to the Netherlands twice, concentrating on Amsterdam and the surrounding area. If you have never been to Europe, excluding England, this a great place to get your feet wet. English is the unoffical second language and everyone speaks it. Signs, menus, etc. are all in English and Dutch.
I have traveled all over the US. Since my diagnosis I have gone on some of my dream trips. First we went to the coast of Maine; beautiful scenery and lots and lots of seafood. Then we took an Inland Passage Cruise in Alaska on a 100 passenger boat; icebergs, whales and so much more. Last year we went to New Mexico to see Santa Fe and Georgia O'Keefe's Ghost Ranch among many things.
In Maine I used an ordinary cane, in Alaska I used a quad cane, in New Mexico I used a walker with a seat. Now that I am using a power wheelchair my options are more limited partly because flying feels like too much of a hassle for me. Road trips this year. We have a second home in Door County, WI and will continue to go there.
One of the biggest challenges for handicapped travel is accomodations. Not all "handicapped" rooms are created equal. Too many rooms labeled as handicapped don't have grab bars at the toilet or in the tub or a tub chair. Or the room is too narrow to allow someone using a walker or a wheelchair to manuever. It is very important to be specific as to what you need and have someone at the hotel physically check to see if the room will suit your needs.
A good resource: http://www.access-able.com/tips/
Friday, April 4, 2008
Wednesday, April 2, 2008
Fun, fun, fun
There is nothing more fun than going to another doctor. I have seen five different doctors this year alone. Add surgery and three days in the hospital and you have a laugh riot! Every trip to one of these doctors is a production because I am using a power wheelchair. This means I have to ride the fold-out ramp into our custumized van and get my chair "locked in". Reverse the process when I get to the hospital where all my different specialty clinics are.
Sometimes I have an appointment at two different clinics in the same day, on opposite sides of the immense campus housing the hospital and clinics. It is probably close to a half mile from end to end, involving very long corriders with twists and turns and multiple elevator rides in order to get from building to building (attached to each other). I can zoom from place to place because my power chair has amazing speed. I do have to remember to wait for my husband when I get to one of the "forks in the road" because he will get lost no matter how many times we have done this.
At least when I am at the hospital people are considerate of someone in a wheelchair. They move aside when I need to get through a crowd and make room for me on the elevator. This cannot be said of the general public. Somehow, even though I am in a big power chair, I am invisible. People don't notice that I am trying to get through a crowd. Sometimes they may glance at me then return to talking with each other without moving an inch. My hubby tries to get their attention. When I am finally able to move forward most people don't move enough to let me through without my running over their feet. I am so grateful for those few people who try to help me. They are rare and precious. The rest of "them" are RUDE and INCONSIDERATE to say the least.
Life in a wheelchair is no picnic. There are far too many places I can't go to because they don't have a ramp and/or a wheelchair accessible bathrooms. Not all bathrooms labeled as handicapped can accomodate a wheelchair. Then there is the issue of doors, especially those in bathrooms. How do I push or pull a door open by myself when it is heavy and closes automatically? Unless someone else is coming in or out I struggle with this. It would be funny except it is so difficult.
Ironically my power chair allows me more freedom to go more places. Without my chair I couldn't go out to a restaurant or go shopping for example. Inside my home I can easily go from room to room, hopefully withour nicking the walls or doorways. I can maintain some independence this way.
Being able to maintain some independence is VERY important to me. I have always taken care of myself. ALS steals so much that anything that makes me feel even a little like my former self is precious. I have a hard time relinquishing tasks to someone else.
Sometimes I have an appointment at two different clinics in the same day, on opposite sides of the immense campus housing the hospital and clinics. It is probably close to a half mile from end to end, involving very long corriders with twists and turns and multiple elevator rides in order to get from building to building (attached to each other). I can zoom from place to place because my power chair has amazing speed. I do have to remember to wait for my husband when I get to one of the "forks in the road" because he will get lost no matter how many times we have done this.
At least when I am at the hospital people are considerate of someone in a wheelchair. They move aside when I need to get through a crowd and make room for me on the elevator. This cannot be said of the general public. Somehow, even though I am in a big power chair, I am invisible. People don't notice that I am trying to get through a crowd. Sometimes they may glance at me then return to talking with each other without moving an inch. My hubby tries to get their attention. When I am finally able to move forward most people don't move enough to let me through without my running over their feet. I am so grateful for those few people who try to help me. They are rare and precious. The rest of "them" are RUDE and INCONSIDERATE to say the least.
Life in a wheelchair is no picnic. There are far too many places I can't go to because they don't have a ramp and/or a wheelchair accessible bathrooms. Not all bathrooms labeled as handicapped can accomodate a wheelchair. Then there is the issue of doors, especially those in bathrooms. How do I push or pull a door open by myself when it is heavy and closes automatically? Unless someone else is coming in or out I struggle with this. It would be funny except it is so difficult.
Ironically my power chair allows me more freedom to go more places. Without my chair I couldn't go out to a restaurant or go shopping for example. Inside my home I can easily go from room to room, hopefully withour nicking the walls or doorways. I can maintain some independence this way.
Being able to maintain some independence is VERY important to me. I have always taken care of myself. ALS steals so much that anything that makes me feel even a little like my former self is precious. I have a hard time relinquishing tasks to someone else.
Monday, March 31, 2008
My introduction continued
A little bit about my ALS. My ALS was difficult to diagnosis because of my unusual presentation. My first symptom was a hoarse voice. I attributed that to my allergies. However a few months later I began slurring some words, not many but those words were very hard to say. I remember trying to tell someone to fax something tomy office but I couldn't say fax. It came out "fa", no "x" sound no matter how hard I tried. When a co-worker told me I was slurring my words I knew it was time to find out what was wrong.
Thus began the marathon of different doctors and many, many tests. Because my only obvious symptom for quite a while was the deterioration of my voice I was a puzzle. At first I was sent to an ENT (ear, nose, and throat doctor). The theory then was that I may have a rare nervous system disorder called spasmodic dysphonia which effects the vocal cords. This is very treatable. Most often botox injections at the site of the "paralyzed" vocal cords provides relief. No such luck. The ENT said I didn't have spasmodic dysphonia and referred me to a neurologist.
The neurologist, my first, did EMGs, an MRI, blood tests, and physical exams. The possibilities were Myasthenia Gravis or ALS and something else I can't remember. Because I didn't yet have some of the more obvious symptoms of ALS such as weakness in my arms or legs this doctor was willing to give me a definite diagnosis although he said Myasthenia Gravis had been ruled out. Unfortunately an ALS diagnosis is often obtained by ruling out everything else. I asked for a referral to an well-respected ALS expert (neurologist #2) at the University of Wisconsin Hospital in Madison.
Finally I received a definitive diagnosis of ALS, about 16 months after I first sought answers to my voice problems. I felt a mixture of relief and fear. I am a nurse and had suspected ALS for quite a while. As a compulsive researcher I already knew the prognosis was bad. I was and am determined to beat the odds and so far I have. It has been almost five years since my initial symptoms and I am doing better that expected. The common time-frame is ALS patients live three to five years. So far so good!
I still have very good fine motor skills hence my ability to type fairly quickly. That is a big thing because I post on message boards, e-mail, and use a hearing carry over (HCO) tty device to "talk" on the phone.
I have so much more to say. As they say, "The saga continues".
Thus began the marathon of different doctors and many, many tests. Because my only obvious symptom for quite a while was the deterioration of my voice I was a puzzle. At first I was sent to an ENT (ear, nose, and throat doctor). The theory then was that I may have a rare nervous system disorder called spasmodic dysphonia which effects the vocal cords. This is very treatable. Most often botox injections at the site of the "paralyzed" vocal cords provides relief. No such luck. The ENT said I didn't have spasmodic dysphonia and referred me to a neurologist.
The neurologist, my first, did EMGs, an MRI, blood tests, and physical exams. The possibilities were Myasthenia Gravis or ALS and something else I can't remember. Because I didn't yet have some of the more obvious symptoms of ALS such as weakness in my arms or legs this doctor was willing to give me a definite diagnosis although he said Myasthenia Gravis had been ruled out. Unfortunately an ALS diagnosis is often obtained by ruling out everything else. I asked for a referral to an well-respected ALS expert (neurologist #2) at the University of Wisconsin Hospital in Madison.
Finally I received a definitive diagnosis of ALS, about 16 months after I first sought answers to my voice problems. I felt a mixture of relief and fear. I am a nurse and had suspected ALS for quite a while. As a compulsive researcher I already knew the prognosis was bad. I was and am determined to beat the odds and so far I have. It has been almost five years since my initial symptoms and I am doing better that expected. The common time-frame is ALS patients live three to five years. So far so good!
I still have very good fine motor skills hence my ability to type fairly quickly. That is a big thing because I post on message boards, e-mail, and use a hearing carry over (HCO) tty device to "talk" on the phone.
I have so much more to say. As they say, "The saga continues".
Sunday, March 30, 2008
My introduction
Hi! I've never blogged before but here I go.
I use Speechless Mary as my "name" because the first symptom of ALS or Lou Gehrig's disease for me was deterioration of my speech. Major bummer because I liked to talk, a lot. I have a form of ALS called bulbar-onset; more on that later. Now I am speechless in the conventional sense. However I e-mail, write notes, and now this blog. I can "talk" using a small Windows-based device that always me to enter what I want to say and then actually says it in a voice of my choice. Slower than normal speech but at least I can speak, sort of.
If you don't know about ALS a good basic description can be found at: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm#What%20is%20amyotrophic%20lateral%20sclerosis
Loss of speech was just the beginning. I have decreased strength on my left side resulting in very poor balance and a tendency to drop things from my left hand. Before I got a walker and now my fancy power wheelchair I "fell down and went boom" a few times. The last time was in January and I couldn't get myself back up for the first time. My hubby called 911 and several handsome firefighters came to help. The biggest embarrassment for me wasn't falling, it was that I was only wearing a nightgown! That made the whole situation very funny later.
Despite having ALS for almost five years I am trying to as much as I can for as long as I can. We have been to the coast of Maine, gone on an Inland Passage cruise in Alaska, and spent some time in New Mexico. I love to travel and will tell you more about that in the future.
Although being in a wheelchair requires more planning a lot of things are still doable. I even found a big perk. Seeing Stevie Wonder is on my "bucket list" and I never thought I would be able to see him but he is coming to Summerfest in Milwaukee (I live there) on opening day. http://www.summerfest.com/flash/ My hubby got the best seats anyone could get and they are for handicapped people. The seats are in the first row right next to the stage. The area is raised for a better view. We have to be escorted by security under the stage to get to our seats. How cool is that? I am a VIP!
That's it for now. Thinking and typing tire me out, especially the thinking part.
Mary
I use Speechless Mary as my "name" because the first symptom of ALS or Lou Gehrig's disease for me was deterioration of my speech. Major bummer because I liked to talk, a lot. I have a form of ALS called bulbar-onset; more on that later. Now I am speechless in the conventional sense. However I e-mail, write notes, and now this blog. I can "talk" using a small Windows-based device that always me to enter what I want to say and then actually says it in a voice of my choice. Slower than normal speech but at least I can speak, sort of.
If you don't know about ALS a good basic description can be found at: http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm#What%20is%20amyotrophic%20lateral%20sclerosis
Loss of speech was just the beginning. I have decreased strength on my left side resulting in very poor balance and a tendency to drop things from my left hand. Before I got a walker and now my fancy power wheelchair I "fell down and went boom" a few times. The last time was in January and I couldn't get myself back up for the first time. My hubby called 911 and several handsome firefighters came to help. The biggest embarrassment for me wasn't falling, it was that I was only wearing a nightgown! That made the whole situation very funny later.
Despite having ALS for almost five years I am trying to as much as I can for as long as I can. We have been to the coast of Maine, gone on an Inland Passage cruise in Alaska, and spent some time in New Mexico. I love to travel and will tell you more about that in the future.
Although being in a wheelchair requires more planning a lot of things are still doable. I even found a big perk. Seeing Stevie Wonder is on my "bucket list" and I never thought I would be able to see him but he is coming to Summerfest in Milwaukee (I live there) on opening day. http://www.summerfest.com/flash/ My hubby got the best seats anyone could get and they are for handicapped people. The seats are in the first row right next to the stage. The area is raised for a better view. We have to be escorted by security under the stage to get to our seats. How cool is that? I am a VIP!
That's it for now. Thinking and typing tire me out, especially the thinking part.
Mary
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