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Ataxia Support

Machado Joseph disease

I am a veteran who has been diagnosed with Machado Joseph disease, I feel that by attempting to stay in shape and keep on going has been what has been helping me through this. I do have my bad days though and try to realize what makes my days bad. I have found that when I'm stressed or tired it makes for a difficult day. Also found that the use of tobacco makes symptoms worse as well, from time to time I like to have a beer which too affects me to only limit myself to 1 or 2 anything more than that well I can't walk. However I do have a cane, a walker, and a scooter which I do use a lot lately, my scooter I use when I am going to be on my feet a lot, cane is used for little in and outs and, walker is used for in homes and at Dr. office. I started studies at UCSF but have moved I would like to know if any one has had any luck with any kind of treatment. I also am medically retired do to this disease its very difficult because I know what to expect, I watched my grandfather pass away and my mother pass away from this disease, and I half to be honest it sucks but I keep going forward I have 4 kids and they're all in there 20's none of them showing signs but I just half to stay strong, that way if one of them have it they too could get through this and know that they still can have fun.

Hi!

I have MJD too - diagnosed about a year ago based on family history and neurological exam, (no bloodwork). I'm still working and driving and I can walk unassisted but I'm very wobbly and veer off into walls and furniture frequently.

My grandmother had it, too, but that was before there were any tests. And because 2 of her 4 children (including my Dad) died young before they could have shown symptoms, I never knew that he would have had it. His other 2 surviving brothers had it, and lots of their chidren and grandchildren too.

Stress, tiredness, alcohol, minor illnesses like colds, and haste all affect me. My swallowing is fine unless I eat really fast or take too big bites. If I speak slowly and deliberately people understand me, but I know I'm "off my game". I can walk decently unless I'm rushing or just plain forget and turn too quickly. Lots more little symptoms and sometimes it feels like death by a thousand cuts.

I try to stay positive and am working on a really strong self care plan. I intend to enjoy my life in accordance with my limitations. And like you, I want to stay a positive role model for my kids. Meanwhile, let's all fundraise and promote awareness so the next generation won't have to be affected!

Hi,

I was diagnosed about 3 years ago with MJD. I am on disability but still drive, and I am wobbly and veer off into walls and furniture. I use a cane for short walks, and a walker for longer distance. You have to stay positive even if its hard sometimes. Hopefully they will find medication or a cure to help with the balance. My grandfather and my dad we think they had it however never tested. I don't remember my grandfather as I was too young but my dad died 26 years ago and he suffered so much. I pray that my children and grandchildren do not have this gene. Make sure that your children live their lives to the fullest.

Take care and know that you are not alone.

Hi Nana,
I’m just starting to think about applying for disability. I stumble alot, am very uncomftable walking outside in fields and pastures with uneven footing (part of my job) drop things alot, am asked to repeat things, and sometimes feel generally foggy. I spend 2 1/2 hours commuting daily and it deftinitely wears me out. I’ve reduced my hours to 4 days a week to get more rest and to be able to attend Dr’s appointments without stressing out about being missing from work. I feel like no matter what I do, time is still running out. I’d like to stop work so that I can spend a bit of quality time with my family. How did you know when it was time to apply for disability?

Louise

Dear Eleets39, Sounds like you're doing all you can to maintain yourself physically and emotionally! I honestly think you're being a good example to your children, in spite of obstacles...,kudos to you! Ataxia is frustrating and challenging, all you can do is your best! ;o)

Hi Louise,

I found it very difficult to do my job it required me to travel and my stress level very high and it was becoming a real problem for me to walk without being wobbly and was hitting walls at work and my coworkers wondering if I was drunk at 9 am and having to explain. I loved my job however I came to a point in my life where you need to make the change however difficult. My company was very good to me when it came to have to stepping down and make the decision to go on short term disability first and then apply for long term. You will need the support of your family. Even now I miss my work but I know that there is no way I could offer 100% to my job.

My Dr's highly recommended that I change my job as it was very stressful and demanding of my time. It took me over a year to come to terms with leaving and I had the help of a social worker to help me during the process. I had been working for over 30 years and did not know how to stop ad take care of myself. Hope this helps you and good luck.

Nana

Dear Louise, I knew it was time to leave my job (apply for medical retirement) and eventually apply for disability when day to day tasks became overly difficult as my ataxia progressed. When I could no longer do my job to my standards (which were high), I knew it was time. I was a social worker (28 years) and continued to work for three years beyond diagnosis (diagnosed eleven years ago). I did much of my work on a computer, but started keyboarding with just my index fingers. My speech became increasingly slurred (especially when tired or stressed), to the point where I thought maybe my clients were having a difficult time understanding me (in person or on the phone). I would write things over and over to make them legible. My balance was becoming highly compromised also, as my ataxia was progressing! For these reasons and more, I just knew it was time to retire! My best to you, as you're not alone in your journey..., ;o)

Hey Everyone, I also have MJD as well. My journey has taken me to early retirement as well. And I have to say it has been long and hard. (thats what she said!) I was officially diagnosed in 2011 but I have known about this hereditary disease since the mid 1990s. Something was just "not right" with my body. I have all the symptoms that all of you have and more. I have had double vision now for 4 years. The affects of this disease to me have been enormous. I am 42 but feel as though I am 100! I have 3 kids and I pray to God that they do not inherit this horrible disease. I have great friends and family and my wife is a big inspiration to me. A big thanks to all of u that read this. Stay Strong!

Amen I know exactly what you are talking about I too was diagnosed in 2011 and my wife is awesome along with my step children they are very supportive and helpful. I have my days as I am sure you as well I just turned 40 and very worried about my biological children. Thank you for replying its good to hear from someone else with the exact issues.



Louise said:

Hi Nana,
I'm just starting to think about applying for disability. I stumble alot, am very uncomftable walking outside in fields and pastures with uneven footing (part of my job) drop things alot, am asked to repeat things, and sometimes feel generally foggy. I spend 2 1/2 hours commuting daily and it deftinitely wears me out. I've reduced my hours to 4 days a week to get more rest and to be able to attend Dr's appointments without stressing out about being missing from work. I feel like no matter what I do, time is still running out. I'd like to stop work so that I can spend a bit of quality time with my family. How did you know when it was time to apply for disability?

Louise

Louise,

I new when it was time to retire once I was told that I was starting to get to be a liability. I wasn't ready to stop working, in my mind but as for my legs and body well it was different message. It really sucks because you have some days that you just feel alone and that people just don't understand. I get told to slow down a lot but the thing is in my mind I'm already going slow, which sometimes causes my wife and I to bump heads.

Thanks to everyone for your thoughtful replies. Great to see (once again) that I'm not so alone!

I'm feeling like it's time to leave my job. Comments have already been made about my balance, people have thought I was drinking. I've reduced my work hours and people have thought I am just taking a whole lot of vacations, And this morning, my director called me to offer to move my job to a closer office to my home to help reduce my commute. But I'm worried that he thinks I need to move to a less important role than the one I'm in. The pay would remain the same but I would no longer be the lead employee. It feels like I'm being shown the door.

I'm concerned that leaving my job will isolate me and that without an income, I would just stay home by myself every day.

Louise

Need to apply for Social Security disability