Hi- SCA6 diagnosed x 2yrs. I am 45 years old, still working full time and do not use any assistance devices. Leaving work yesterday I tripped and fell ended up on all fours Luckily nothing but my pride is hurt. I can’t shake how upset I am that this happened. Looking for some encouragement please :slight smile:
The best advice is that when you fall get back up! I know that sounds simplistic but please not only read it but REALLY understand it. Best of luck!
I am SCA-6 diagnosed when I was about 60. Now I am 67. But my symptoms started when I was in 50’s. It’s a slowly progressive disease unless they can find something to further slow it down. I am going through an expanded study of BHV 4157 (Trigriluzole) in late January. It won’t be a bad idea to get into one of the research centers.
I do have my name in for any clinical trails, and my neurologist at Mass General is looking for me as well. Keep us posted & best of luck. to you.
Sorry for being a Sad Sally, I’m normally a pretty positive person.
Read this and join if you already haven’t Ataxia registry
Thank you. I do understand. I’m so busy pretending I don’t have this dreadful disease, when something like this happens it smacks me in the face. Hello…you have Ataxia.
NO ONE WANTS THIS ILLNESS. But unfortunately, we have no choice. I’m not sure if you’ve seen this before in one of my posts but I still live by it. FYI, I’ve had this illness for over 50 years.
Either you can let this illness overwhelm you or you can continually try to overwhelm it.
I am going to Johns Hopkins, Baltimore MD. Mass General has a good Ataxia center.
United States, Massachusetts
Massachusetts General Hospital Not yet recruiting
Boston, Massachusetts, United States, 02114
Contact: Jason MacMore 617-■■■■ ■■■■
It’s so embarrassing when you fall in public. This happened twice to me. I pulled a cart over in a supermarket car park, and cut my lip. And, I fell backwards in the aisle on a train But there have been numerous other incidents I would’ve preferred no-one to have witnessed The good thing is you were unhurt xB
Get used to it. It SUCKS but it’s going to happen. Be happy it was only your pride that was injured. I’m sure everyone can attest to many scrapes, stitches, broken bones.
Falling Upward - Richard Rohr
Try not to be embarrassed because it will probably happen again. First make sure you are not injured and then let anyone else help you up. People are kind. FALL SOFTLY
You may want to be pro-active and get a referral to a PT “How to Fall” class in your area.
I know it sounds odd, but PT and Occupational therapies offer classes on how to fall correctly, my friend with MS has taken several different ones and she swears by them.
I have also heard good things about tai chi or yoga for helping balance. I have no personal experience, but it probably cannot hurt. Your doctor might have the best references.
Denial, or pretending it isn’t real is not known to be a successful long-term strategy. A therapist might be helpful in dealing with realities and fears.
Dear ErinHry, The first time I fell (several years ago), I started using a cane (stick) the next day, as I severely injured my back! Up until that fall, I used no assistive devices (I guess I was kid of in denial). I’ve had ataxia over 20 years now and just found out in 2017 (through genetic exome testing) my ataxia is due to Niemann Pick C disease (extremely rare, adult onset), as I was originally diagnosed with Sporadic Cerebellar Ataxia (unknown cause) at 49 years old, although I had extremely minor symptoms starting at about 43 years of age. I’m 64 almost 65 (birthday is in February) years now. Anyway, my ataxia has progressed and will continue to do so. I also sometimes use a rollator depending on the situation. One good thing is I’ve NEVER fallen while using a cane or rollator, but I have when NOT using one or the other. I’ve fractured my pelvis, fractured my ribs, split the back of my head open requiring nine staples to close the wound, tore my meniscus in my right knee requiring surgery and suffered various contusions and large bruises. Using a cane or rollator makes me feel more secure and also tells people I’m disabled so please don’t run into me…,ha! People even hold doors at shops open for me, which I so appreciate! So using a cane and/or rollator has really helped me maintain my independence and prevents falling (which IS NOT my idea of a good time…,ha!). My best to you…,;o)
I mean’t to say, KIND of in denial, not kid of in denial…,ha!
A physio therapist can teach you how to fall minimizing the chances of injuring yourself.
I have come to know my floors on a more intimate level (oh my are they dirty)!, and I’ve been very lucky in doing so. I have avoided any level of self injury except maybe my pride. But I’ve come to terms with the fact that falls are going to occur, and may be inevitable. I’ve prepared myself both mentally and physically as best I can.
I had the pleasure of having a visit from a care coordinator, and she recommended some sort of fall alert device. In doing a little Googling, I found there are many devices available.
I recently had a fall, and I struggled to regain access to safety. I try to keep my cellphone within reach at all times incase I have to call for help. There are also cellphone alert service providers as well, they specialize in medical emergencies only.
Lucky for me, I have lots of friends and family close by that I can call on for help eliminating the need for emergency services or paramedics.
Many of the fall alert devices simply notify medical or emergency services without any type of dialogue. This may work well for some especially if you have difficulty speaking, or communication becomes impeded in any way.
The take home message is, and I must apologize for sounding blunt, but you can bet that falls are going to occur as the decease progresses depending on the symptoms of your particular type of ataxia. Aquire the services of a PT to train you how to fall better reducing injury. Get some sort of fall alert device, and/or carry your cellphone (if you have one). If you don’t have a cell, it may be worthwhile investing in a cheep model with the bare minimum service for emergency purposes. Most phone retailers have them, and provide plans just for emergency purposes. My mother has one. And most important of all, prepare yourself mentally for falls, chances are they are going to happen. Falls usually occur at the most inconvenient time(s) not that they are good any times. And in crowds with lots of witnesses. Although, you may be surprised by the number of people that show some compassion, and jump in to assist you to safety.
As to falls, I learned over the years that most folks get hurt because they tense up as they’re falling. If you feel yourself falling, I recommend that you just let yourself fall and do NOT tense up your body. This is not the answer but it just might help.
Once when I fell, I broke my femur. That required surgery and rehab. My problem, as well as ataxia, was osteoporosis. I suggest everyone keep up on your bone scans — men can develop it, too. If you are a fall risk or even might be, it pays to avoid my problem if you can. It hurt! A lot!
well said about being overwhelment.