In the 1950s, the doctor told my Grandma if she didn't start taking medicine she would have to go to the hospital. He thought she would be afraid to go to the hospital since she had never been to one. Doctors in those days made house calls and babies were born at home, so she had never needed to go. However, when he came back the next week, Grandma had her bags packed. She went to the hospital and they told her they had to have the room for somebody else.
Grandma had high blood pressure and the doctor told her she should eat less salt. I remember her sitting on the porch rubbing the salt off of the Fritos with a Kleenex and eating them. I thought how silly that was when I saw it.
They didn't have antibiotics until the 1950s, so at that time when someone was sick, they were quarantined so they didn't spread it around. That's why Daddy had the chicken pox when Bobby Joe and I did in the '50s. Aunt Oakie had it when she was 60. When she was sick when she was in high school in the '20s, she was the same age as one of the doctor's sisters. It was the doctor who made house calls and when he got there, he let on like she would have been at the school graduation parties if she hadn't been sick. As it was, she didn't go to the parties.
Feb 8, 2018
Feb 6, 2018
Living with MSA
We finally made it to the doctor at Baylor Neurology in Houston in about March 2016 to make a final diagnosis. It led to another line of tests with a specialist in autonomic dysfunction. I had my air capacity tested, sweat function, and a tilt table test for orthostatic hypotension. Based on the autonomic dysfunction and my other symptoms, Baylor doctors said I had probable multiple system atrophy.
By fall 2015 I had been experiencing additional symptoms like choking on liquids and feeling lightheaded when sitting up or standing up. Incontinence was a big problem. I started Zoloft to help control a symptom called PBA that involved uncontrolled laughing and crying out of context. I had a physical therapist who came to the house and showed me how not to fall with the rollator. Also, the occupational therapist brought button hooks so I could learn to use those when getting dressed. Speech therapists were consulted for the swallowing, as well as worsening speech. Staying active by riding my tricycle and walking as long as possible helped me stay involved longer than I would have. I continued attending church, going to our Saturday "trunk sales," and working on scoring for Pearson on standardized tests all into 2015. Things only changed with a bad fall in February 2016. I was never independently mobile again after that.
It's fortunate that MSA doesn't cause a lot of pain. My legs have hurt pretty bad at times, and where I lean it causes a knot in my shoulders, which they call clothes hanger pain. Sometimes my nose tingles and I have a constant drip if I sit up.
One difference between MSA and other forms of old age dementia would be the fact that with MSA you keep your mental capacity until the end. Even though you are unable to write or read or do things you used to do, such as crocheting or sewing, or even walking, talking, or feeding yourself, you are not affected with memory loss or confusion.
MSA is considered a very rare movement disorder. Research on MSA can help with treatments and understanding other neurological diseases such as Parkinson's Disease, Alzheimer's, and MS, as well as ALS. At this time, none of these diseases has a cure or even an effective treatment to slow the progression. Some symptoms like excess saliva, swallowing issues, and even bladder control can be temporarily relieved with Botox injections, but there is a risk of getting too large a dose and having negative effects for several months. Levodopa is effective in preventing tremors and reducing muscle constriction in your neck and hands. However, it can have harsh side effects, so the dose has to be set to balance those with the benefits. Ultimately, it is not a longterm fix and we need treatments that slow or stop the disease itself.
By fall 2015 I had been experiencing additional symptoms like choking on liquids and feeling lightheaded when sitting up or standing up. Incontinence was a big problem. I started Zoloft to help control a symptom called PBA that involved uncontrolled laughing and crying out of context. I had a physical therapist who came to the house and showed me how not to fall with the rollator. Also, the occupational therapist brought button hooks so I could learn to use those when getting dressed. Speech therapists were consulted for the swallowing, as well as worsening speech. Staying active by riding my tricycle and walking as long as possible helped me stay involved longer than I would have. I continued attending church, going to our Saturday "trunk sales," and working on scoring for Pearson on standardized tests all into 2015. Things only changed with a bad fall in February 2016. I was never independently mobile again after that.
It's fortunate that MSA doesn't cause a lot of pain. My legs have hurt pretty bad at times, and where I lean it causes a knot in my shoulders, which they call clothes hanger pain. Sometimes my nose tingles and I have a constant drip if I sit up.
One difference between MSA and other forms of old age dementia would be the fact that with MSA you keep your mental capacity until the end. Even though you are unable to write or read or do things you used to do, such as crocheting or sewing, or even walking, talking, or feeding yourself, you are not affected with memory loss or confusion.
MSA is considered a very rare movement disorder. Research on MSA can help with treatments and understanding other neurological diseases such as Parkinson's Disease, Alzheimer's, and MS, as well as ALS. At this time, none of these diseases has a cure or even an effective treatment to slow the progression. Some symptoms like excess saliva, swallowing issues, and even bladder control can be temporarily relieved with Botox injections, but there is a risk of getting too large a dose and having negative effects for several months. Levodopa is effective in preventing tremors and reducing muscle constriction in your neck and hands. However, it can have harsh side effects, so the dose has to be set to balance those with the benefits. Ultimately, it is not a longterm fix and we need treatments that slow or stop the disease itself.
Feb 2, 2018
Living with Ataxia
This summary that I wrote in 2014 describes life with a diagnosis of sporadic cerebellar ataxia, prior to things progressing to a probable diagnosis of multiple system atrophy in 2016.
Living with Ataxia (2014)
Hello, my name is Hazel Freeman. I am a 71-year-old grandmother. I have lived in Silsbee, Texas, since 2003. My husband, Paul grew up there, and as he says, "graduated from Silsbee High School in the dark ages." His parents were T.C. and Minta Freeman.
I expected to be one that climbed on the roof at age 102, I was so healthy for my age. Now, thanks to ataxia, I can't even walk across the room without help.
I first noticed the effects of ataxia 3 years ago in 2011. In January 2012, it had gotten worse and I took some bad falls. I then went to the doctor. I was diagnosed that summer after MRIs, blood tests, and seeing an ENT to rule out ear problems. I went from walking using a cane to using a rollator (walker) in November 2012. Now, it looks like a wheelchair is in my future.
Paul says I am drunk all the time--even though I do not drink alcohol. Ataxia affects the cerebellum, which is the part of the brain also affected by alcohol when someone drinks. It causes staggering gait, slurred speech, bladder incontinence, and peripheral neuropathy, among other things.
One concern about ataxia is that one can choke on water or one's own spit. I understand that sometimes a thickener is added to water and other liquids to keep people with ataxia from choking. So far, this hasn't been a problem for me. Also, until recently, my speech wasn't slurred too bad except when I was tired. It is getting harder and harder to talk, and especially, to be understood. Probably the thing that frustrates me most is not being able to write or print. Apparently, this is common to ataxia. I like to take notes and make lists--now I can't do either.
Depression is usual among people who have ataxia. As my small motor skills have been affected and the disorder progresses, I have been somewhat depressed over not being able to do things I have always done. For instance, I love to cook, and recently we decided that Paul needed to do most of the cooking for us. It's fortunate that he can. It is also fortunate for me that he is such a patient caregiver and cares so much.
There is no cure or treatment for ataxia. It is something to be endured, and therapy and life adjustments can help you cope. Someone on the Living with Ataxia site recently described it as walking on a boat that is going over waves. It makes you tired just to do ordinary things because it requires extra effort to keep from falling. Ataxia, while it is a rare disease, affecting 150,000 or fewer Americans, is often a hereditary disease, affecting young people and children. It can be caused by a stroke or head injury, or be a gluten reaction, or, as in my case, the cause may be unknown.
Be aware of ataxia, and remember some people are dealing with it day by day and minute by minute. Do what you can to help researchers find a cure or treatment for this condition!
Living with Ataxia (2014)
Hello, my name is Hazel Freeman. I am a 71-year-old grandmother. I have lived in Silsbee, Texas, since 2003. My husband, Paul grew up there, and as he says, "graduated from Silsbee High School in the dark ages." His parents were T.C. and Minta Freeman.
I expected to be one that climbed on the roof at age 102, I was so healthy for my age. Now, thanks to ataxia, I can't even walk across the room without help.
I first noticed the effects of ataxia 3 years ago in 2011. In January 2012, it had gotten worse and I took some bad falls. I then went to the doctor. I was diagnosed that summer after MRIs, blood tests, and seeing an ENT to rule out ear problems. I went from walking using a cane to using a rollator (walker) in November 2012. Now, it looks like a wheelchair is in my future.
Paul says I am drunk all the time--even though I do not drink alcohol. Ataxia affects the cerebellum, which is the part of the brain also affected by alcohol when someone drinks. It causes staggering gait, slurred speech, bladder incontinence, and peripheral neuropathy, among other things.
One concern about ataxia is that one can choke on water or one's own spit. I understand that sometimes a thickener is added to water and other liquids to keep people with ataxia from choking. So far, this hasn't been a problem for me. Also, until recently, my speech wasn't slurred too bad except when I was tired. It is getting harder and harder to talk, and especially, to be understood. Probably the thing that frustrates me most is not being able to write or print. Apparently, this is common to ataxia. I like to take notes and make lists--now I can't do either.
Depression is usual among people who have ataxia. As my small motor skills have been affected and the disorder progresses, I have been somewhat depressed over not being able to do things I have always done. For instance, I love to cook, and recently we decided that Paul needed to do most of the cooking for us. It's fortunate that he can. It is also fortunate for me that he is such a patient caregiver and cares so much.
There is no cure or treatment for ataxia. It is something to be endured, and therapy and life adjustments can help you cope. Someone on the Living with Ataxia site recently described it as walking on a boat that is going over waves. It makes you tired just to do ordinary things because it requires extra effort to keep from falling. Ataxia, while it is a rare disease, affecting 150,000 or fewer Americans, is often a hereditary disease, affecting young people and children. It can be caused by a stroke or head injury, or be a gluten reaction, or, as in my case, the cause may be unknown.
Be aware of ataxia, and remember some people are dealing with it day by day and minute by minute. Do what you can to help researchers find a cure or treatment for this condition!
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