hi there ,I’ve been on this site for a few months now and I would like to give thanks to all of you who reply ,I don’t suffer from SCA myself but my relative does , and it’s been a tough time for them coping with it , especially since we they don’t have a clear and precise diagnosis ,i want to ask about a part that my relative doesn’t know about yet , and that’s the swallowing problem , since it causes many annoying things like coughing , choking ,aspiration pneumonia … and the list goes on ,i want to know about how it has affected peoples’ life style and how bad could it be ,i would like to get in detail about it and what are the risks at hand as well as the precautions and assistance that can be given , also , does anybody know if some ataxias don’t get major swallowing problems and if there is a treatment for it if dysphagia is prominent .
Thanks in advance.
Hi, you are doing a marvellous thing here: getting information about this condition to keep an eye on someone. I know the choking-swallowing issue is very scary. I regularly experience swallowing “down the wrong hole” (even my own spit sometimes) and having to cough very hard, the muscles around the trachea closing up, the fear. I’ve always managed to force myself to calm down/my breathing but I know probably one day end up in hospital.
Insist on the patient to eat calmly, avoid small things like couscous etc, never speak with mouth full, being conscious of every act of swallowing,…
Hope this helps
No swallowing problems at all here. Mine is type iloca (idiopathic late onset cerebellar ataxia), so they don’t know what’s causing it, first symptoms 2002 at age 51, diagnozed 2004. No slurred speech here either, as some say they have. Walking the walls here though like many I suppose. Thank God for walls and furniture, right. So indoors I manage, outdoors I’m in a wheelchair. Ah well, happy it’s me and not my loved ones. Now that would really get me worried. Take care! hugs from Holland, Elle.
Thank you mellie, that’s quite the fast reply, it’s very courageous of you to handle this problem, it’s one of my worst fears, to keep on having to choke yet you have to deal with it non stop, i truly admire you
thanks for the advice, I’ll definitely tell them that.
Thanks for the quick reply Elle-Strik, it’s good to know that not all ataxias suffer from dysphagia, also, about the walking with walls thing,my relative and I have been doing exercises given from Dr.Tom clause on his website, have you tried them, they might help you, they say he’s a great teacher on matter since he has ataxia himself.
One thing to help…at least when sleeping…a wedge pillow. JD
thank you ,we’ll need this
If possible, see a Speech & Language Therapist. Advice can be given to help avoid choking incidents. There are thickeners to add to food and liquids, and straws with valves. xB
with the speech therapist is it possible to reduce the amount of choking to almost zero for the rest of an ataxic person’s life ?or just until the symptoms get worse ?
I have had this problem for years and each time it happens it is terrifying for a couple of minutes. The doctor put me on meds for acid reflux and I have been on them for years and have not been able to quit them they say do not take longer than 14 days but that never worked, it is bad on kidneys and or liver. I have not had much change in the problem but I stopped at night and during the day but I still have problem when eating, if I am not careful I have the throat closing again. I usually have my throat stretched about every 6 months but the last time I went in I had a new doctor that said I am getting them too often.
As with all things relating to ataxia, it would very much depend on the individual. But if the situation is becoming regular, and causing real concern, medical advice should be sought. At worst, some people are more susceptible than others to chest infection, and the possibility of pneumonia.
I have choking incidents myself, even choking on involuntary swallowing of saliva. It’s very scary, and always catches me unaware. xB
gelu65,when you say terrifying for a couple of minutes ,are you talking about a sudden closing of the throat ,or something else ?
And Beryl_Park ,I take it from what you said that not everybody who has ataxia has severe dysphagia and even if they do , not everybody develops pneumonia ,because i thought that was the road for everybody .Also do you do anything to reduce your choking incidents ?
All Cerebellar Ataxias have the same basic component of poor balance, and thereafter various other symptoms associated with Cerebellar Ataxia. These can vary enormously depending on the individual, and whichever type of ataxia it is. I know someone with quite a severe form but, they don’t have any eye problems. Having assumed eye problems were par for the course, this really surprised me.
Most people coping with genetic, progressive forms of ataxia will experience Dysphagia, to a greater or lesser degree. If you search online, you’ll see how difficult it is to predict the course of this symptom. I haven’t as yet seen a Speech & Language Therapist for help with this but, if eating and drinking were seriously impaired, and swallowing was itself an issue, then of course it would be different.
Pneumonia is not common, and it’s not something most of us should expect to have.
You might find it interesting to look on www.ataxia.org for its of facts about ataxia xB
thanks for the answer beryl_Park,the pneumonia part is particularly important i’ll definitely check ataxia.org ,thanks .
When my throat closes I cant get any air, when I breath in I just make a noise and it is terrifying. It shuts off right now. My wife just puts her arm around me and tries to get me to relax. My throat usually relaxes in about 2 or 3 minutes. I read a news article last year a man had this happen and he used a steak knife to give himself a tracheotomy , it was his first problem after a throat operation. I did have a neck operation for cancer in the neck twelve years ago. My throat now closes some while I am eating if I am not careful.
I’m sorry to know that , gelu65 it seems like it’s a rough ride ,how long has the throat closing problem been an issue ?Did it start with the ataxia ?
Have you been in touch with your Neurologist to discuss this problem xB
The throat problems started before any signs of ataxia but there may have been many small signs I don’t recognize, I did have neck cancer operation with some chemo and radiation, Since radiation was near thyroid I believe its the cause of being cold all the time I am wrapped in a blanket all year long to be comfortable. Another problem for me is my wife suffers hot flashes and we have to fight for our comfort.
Hey I request you fold handed never say ‘probably one day…’ Always think you are special and have overcome all hurdels. Do not think even a hurdel. As we think so as we become. So always be die hard positive. O.K.
@victory Hi, you can not change what you are intrinsically. I have never been a very positive person. And I’m not even sure I want to be, because, as I see it it’s not even being a negative person. S#*£ happens, and I like to imagine all the outcomes, covering as many as as possible, to be prepared. I like being prepared. For me, life (everyday life) is hard, sometimes beautiful but those moments are rare, so it serves me better to ‘think of the worst’. Then if something not so bad happens, I feel better than if I was hoping for the best and end up feeling disappointed. I suppose I’m very English in that way.
As for being ‘special’, well… I think with Facebook, Tweeter, etc. people give their opinion all the time and think everybody else is interested. These kind of forums are good for getting information and other experiences about smthg specific. But I am yet to find a purpose to Facebook.
Sorry for the long winded expo.
All the best. M xx
Beryl, whats a straw with valve?
You mean the stretchy end?