Questions from a daughter

General
1

Hi there! I'm new here. My mom was diagnosed with Hereditary Cerebellar Ataxia in 1996 at the Mayo Clinic (after years of misdiagnoses in Canada). She has been living in a nursing home for over a decade (she turned 60 in the home) and as we head into further degeneration I am curious to hear if others have experienced some of the symptoms I am noticing in my mother. Unfortunately she does not have a doctor or specialist who is an expert in Ataxia so I am turning to this community.

Loudness of Voice - Over the past few year my mom's speech has gotten louder. She used to be able to whisper if she was reminded to speak softly but now I watch her peers in the nursing home chastise her for her loudness and it appears that she is unable to control her volume. Has anyone experienced this?

Cognition - Over the past few years it has become clear that my mom's cognition has worsened. I was unaware that this was a symptom of Ataxia. I recently pushed the nursing home to do testing as my mother's family has a history of Alzheimer's. Her memory for names is good but she has difficulty going into the past and most recently I have noticed that she has difficulty formulating thoughts into sentences. She had a CT scan a few months ago that came back negative/blood work with no signs of Dementia and we are going to see a neurologist next month. Any comments are welcome.

Thanks so much and happy holidays!

Lori

2

Lori,

These are certainly things to be concerned about.

All I can tell you is my own story. I have gluten ataxia. I was unable to walk/talk/think for most of 2008. I had no tummy symptoms. I was a mess. A simple blood test can tell the doctors if she may have a problem. A strict gluten free diet is what made me better. Most doctor have no knowledge of gluten ataxia. It's so good that you are her advocate.

There are many here who can give great advice. Mine is just one.

3

GRAIN BRAIN--a Christmas gift to all of us from Dr. David Perlmutter, renowned neurologist whose own father (who used to be a great neurosurgeon) has Alzheimer's has written this blockbuster book that everyone with a neurologic disorder should read. It does not matter what neurological problem you have or what type of ataxia--the information in this book will educate and empower you AND will help your symptoms. My husband has been helped by neurolink, cranial osteopathy, chiropractic neurology, the supplement Protandim, and now this empowering book--I urge all of you to read it--a Christmas gift to yourself or for your loved one. A most blessed new year to each and every one of you!

4

Yes, I have cerebellar ataxia and have the same challenges, a loud voice and cognitive difficulties. I went to a neurophysiologist for testing and was told it was a retrieval problem. The Neurophysiologist gave me a list of coping skills that helped. I have many other challenges too. I do see an ataxia specialist in Boston.

5

Hi Lori,

I am new to this site too but I wanted to comment on the last symptom your Mom is showing. I know for me when I get ataxia symptoms, which I don't have all the time, I have a hard time putting my thoughts together. Sometimes I will stop mid sentence and can't quite figure out how to say what I want to say or I get confused easily. I also have slurred speech. I am hoping the Mayo clinic can help me. I am on the waiting list now for an appointment and hope to get some answers!

6

Where are you in Canada?

7

Like the last reply, I find if my symptoms are more prevalent, I have difficulty figuring out which words to use or get confused more easily. My symptoms a few years ago were much worse than they are now. I have had speech therapy and physical therapy, in addition to my migraines getting under control with botox, so I'm much better. However, it comes in waves for me. I can do yoga one day and the next day have difficulty getting up out of a chair without becoming dizzy. My Dad speaks loudly, my aunt and uncle and both sisters also. We all have SCA type 6. I've been taught to speak louder and enunciate so people understand me better. Speaking slower also helps, which is difficult for me at first because I've always been a fast talker. It REALLY helps A LOT to talk. When first diagnosed, I stopped speaking a lot because I could tell I made others uncomfortable. Worst thing you can do. Using your voice more helps. I hope you find answers for your Mom. My daughter is worried about getting this as so far my family has a 75% rate (although it's 50/50 with my disease) and it gets younger for our family with each generation. I saw daughter questions and that's what made me reply. I know my daughter has lots of questions.

8

Hi Lori!
I hope you were able to see your Mother at Christmas, best wishes to her.

I don’t know why I have SCA, despite testing. Although I’ve been told I’m
negative for SCA6 and Gluten Ataxia.

I’ve had symptoms for many years and on looking back, can see that both
my pitch in voice, memory, ability to follow a conversation and join in and
brain function in general has been variable to say the least.

My Uncle is partially deaf and can only hear if the tone is at a certain pitch,
I gave up trying to have a conversation with him because my voice was
becoming too high pitched. Just before Christmas he was fitted with hearing
aids, we had normal conversations on Christmas Day!

On Christmas Eve I went to a family get-to-gether. On this occasion the
pitch of my voice seemed to have dropped, I felt people were either leaning
in to hear what I was saying, or worse ignoring me because it wasn’t
apparent I’d joined in the conversation!

When this is the case it really makes me feel excluded, ignored. When others
aren’t aware of the difficulties we face sometimes with communication, it can
make for feelings of isolation, it’s sometimes easier just to be an on-looker,
and not attempt to participate because of the chance of embarrassment.

Memory from day to day is unreliable. Like others, I can easily lose the
thread of conversation, break off in the middle of a sentence because I simply
forget the next word. My son took control of Christmas Lunch because I just
couldn’t multi-task when it came to a batch of timings.

I once mentioned to a Neurologist that I worried about the onset of Dementia,
all he said was, there are many kinds of Dementia. But didn’t take the conversation
any further.

Lori, I’m so sorry to hear your Mother is in a nursing home, it seems the wrong place
for her needs, from what I understand of Ataxia anyway.

I hope you feel better informed after questioning the Neurologist. Best wishes xB

9

Thank you everyone for the responses. It sounds to me like the loudness of the voice is associated with Ataxia. Unfortunately for her the residents at the nursing home that live with her don't necessarily understand that it's part of her disease and they make comments. Regarding the cognition - a few of you alluded to having moments when you wanted to say more but couldn't. The experience I just had last week with my mom is that I gave her a piece of mandarin orange. She chewed it and began to spit it out. I have never seen her spit out food. I asked her why she wasn't swallowing (was she having difficulty?) and she said the words "More Done". It was as if she was a child and lost her vocabulary. I needed to probe and I came to the conclusion that the skin of the orange made it difficult for her to swallow. Is this loss of words Ataxia?

10

Loss of words and slow recall can be ataxia. Also loss of muscle control and trouble swallowing can be c. ataxia or Parkinson's.

11

Agree! Grain brain has really been helpful for me!!

Joy said:

GRAIN BRAIN--a Christmas gift to all of us from Dr. David Perlmutter, renowned neurologist whose own father (who used to be a great neurosurgeon) has Alzheimer's has written this blockbuster book that everyone with a neurologic disorder should read. It does not matter what neurological problem you have or what type of ataxia--the information in this book will educate and empower you AND will help your symptoms. My husband has been helped by neurolink, cranial osteopathy, chiropractic neurology, the supplement Protandim, and now this empowering book--I urge all of you to read it--a Christmas gift to yourself or for your loved one. A most blessed new year to each and every one of you!

12

Lori, I sometimes say words in the wrong order or use the wrong word. I was talking to
a new neighbour about some stuffed animals the previous neighbour had, what I actually
meant were soft toys but couldn’t come up with the right words. Afterwards, I felt very
embarrassed, I was also slurring and wobbling around. I can well imagine what she
must have thought.
I have involuntary swallowing sometimes, this leads to choking. Also, I often bite my
tongue. As has been said, it’s down to lack of muscle control. Both of these problems
are common symptoms and no matter how aware I am about the need to take care when
eating, quite often I just forget to do it. This is another thing to be aware of, how easy
it is to simply forget. xB