Greetings to everyone.
My sister and I also suffer from SCA 3 Machado Joseph. The disease we inherit from our father, who died at 64 years..
he was wrongly treated as if suffering from Parkinson's disease and Multiple Sclerosis suffered, he was in a wheelchair. The reason for his wrong diagnosis is that SCA 3 Machado Joseph is a rare disease.
For me, the disease is diagnosed 2011, (DNA genetic test) and has since progressed. 2012 because I fell and broke my leg. After that I used a crutch., and in 2014 I fell and broke my knee.
Both injuries happened to me at work and now I'm at the stage of walkers. and do not know if I will be able to work
And I only have 36 years.
My sister is 53 years old. She is retired., Walk with a walker.
I want to say to all those who suffer from these rare diseases that do not lose hope.
And those who believe in God should be regularly pray because we have found that the strength and brightness in our struggle with the disease.
I know there is no cure. My sister and I only use vitamins: Coenzyme Q 10th, Neurobion (boosting vitamins B complex) and Magnesium.
We use physical therapy and medical spa
I hope I helped someone with this letter.
; )
Welcome, shamie, glad to have you here.
Thank you very much!
! I'm glad I found this support group for people affected by ataxia,
although there is no cure sometimes are kind words of support also cure
Thank you very much!
! I'm glad I found this support group for people affected by ataxia,
although there is no cure sometimes are kind words of support also cure
dancermom said:
Welcome, shamie, glad to have you here.
Hello... A lot of my family members have Joseph machado.
I'm no exactly sure if I have it, but have been experiencing some strange symptoms recently. My eyelid is always twitching along with other muscles all over my body. My hands are very shaky, and sometimes, not often I feel as if I'm choking when eating.
Can you please share your initial symptoms if you are comfortable?
I'm not sure if what I'm experiencing is related.
Thank you for your post
Mary
Hi,
I read this post just a few minutes ago.Wow, you sound alot like me. My father died at 62 years....I was diagnosed in 2006 worked until 2011 and I am now retired I walk with a cane for short distance and I use a walker for longer distance or my husband's arm.
I am finally going to try the Balance Vest by Motion Therapeutics and see if it will help me with my condition.
Stay positive, exercise and lets hope that some form of medication is found in order to assist us with our condition.
Nana
Hello Mary!
My initial symptoms were: frequency of falls., and since my sister was already in medical treatment, and I've tried a neurological examination. The doctor advised me to start do genetic testing on SCA.3
So if you are able to do it-it would be a good and accurate response that you suffer from SCA 3 Machado Joseph.
by by ;)
sl0826 said:
Hello... A lot of my family members have Joseph machado.
I'm no exactly sure if I have it, but have been experiencing some strange symptoms recently. My eyelid is always twitching along with other muscles all over my body. My hands are very shaky, and sometimes, not often I feel as if I'm choking when eating.
Can you please share your initial symptoms if you are comfortable?
I'm not sure if what I'm experiencing is related.
Thank you for your post
Mary
Hi Nana!
Nice to meet you! a
Although our disease is incurable-I think it helps to use more vitamins than drugs.
Because if there are no drugs is better in this case to use vitamins.
I would just say that I and my sister also used the therapy horses. I was very emotionally tied to a horse that I rode (I adore horses that even I paint in watercolor, oil on canvas., And charcoal on paper - I've had several exhibitions)
If I may ask you how old you are now? And how old were you at the beginning of the diagnosis?
:)
Nana said:
Hi,
I read this post just a few minutes ago.Wow, you sound alot like me. My father died at 62 years....I was diagnosed in 2006 worked until 2011 and I am now retired I walk with a cane for short distance and I use a walker for longer distance or my husband's arm.
I am finally going to try the Balance Vest by Motion Therapeutics and see if it will help me with my condition.
Stay positive, exercise and lets hope that some form of medication is found in order to assist us with our condition.
Nana
Hi Shamie,
Welcome to the group. In responding to your questions: I am 55 yrs old, and was 46 yrs old when I was diagnosed with SCA3 - Machado Joseph Disease.
Take care,
Nana
shamie said:
Hi Nana!
Nice to meet you! a
Although our disease is incurable-I think it helps to use more vitamins than drugs.
Because if there are no drugs is better in this case to use vitamins.
I would just say that I and my sister also used the therapy horses. I was very emotionally tied to a horse that I rode (I adore horses that even I paint in watercolor, oil on canvas., And charcoal on paper - I've had several exhibitions)
If I may ask you how old you are now? And how old were you at the beginning of the diagnosis?:)
Nana said:Hi,
I read this post just a few minutes ago.Wow, you sound alot like me. My father died at 62 years....I was diagnosed in 2006 worked until 2011 and I am now retired I walk with a cane for short distance and I use a walker for longer distance or my husband's arm.
I am finally going to try the Balance Vest by Motion Therapeutics and see if it will help me with my condition.
Stay positive, exercise and lets hope that some form of medication is found in order to assist us with our condition.
Nana
Thank you so much for your reply.
I have one question about the frequency of falls.
How fast did these falls start to occur? Did it start off with a loss of balance for a couple of months, or a year, followed by the falls? Or did this happen very fast?
It's very nice to see how positive everyone is in this group!
Gives me hope for my family living with this.
shamie said:
Hello Mary!
My initial symptoms were: frequency of falls., and since my sister was already in medical treatment, and I've tried a neurological examination. The doctor advised me to start do genetic testing on SCA.3
So if you are able to do it-it would be a good and accurate response that you suffer from SCA 3 Machado Joseph.
by by ;)
sl0826 said:Hello... A lot of my family members have Joseph machado.
I'm no exactly sure if I have it, but have been experiencing some strange symptoms recently. My eyelid is always twitching along with other muscles all over my body. My hands are very shaky, and sometimes, not often I feel as if I'm choking when eating.
Can you please share your initial symptoms if you are comfortable?
I'm not sure if what I'm experiencing is related.
Thank you for your post
Mary