Aa
Aa
A
A
A
Close
Avatar universal

What are you afraid of?

There are things about this illness that are really scary. For some people it's the fear of losing their mobility, for others it's not making it to the bathroom on time or not being able to remember where you parked your car.
I'm personally scared that my slurred speech will make it too difficult for people to understand what I'm saying. What are you afraid of?
7 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Thank you Karen, that's very kind of you.  And yes, it is one of the more brutal deaths, IMO, because unlike Alzheimers where the family is probably more impacted as a loved one slips away, ALS is experienced by a fully aware person, who knows they are going to lose everything before the end. (And believe me, I'm in NO way minimizing Alzheimers. They are both simply slightly different flavors of demises that strip the sufferer of everything. Horrid)  

My mother was diagnosed late, at age 69 - a real shock to the whole family, who due to her long time of smoking, had all expected her end to be from either lung cancer or heart disease.  ALS?  Not so much, not at ALL.  She refused a feeding tube early on, and stuck with it to the end. A will of iron, but an end that was brutal. So, with that in mind, I can actually be a bit grateful that it's ONLY MS.  And if that ain't bizarre-o, I don't know what is.  
Helpful - 0
9745005 tn?1410044366
I also meant to say how sorry I was to read about your Mom and her struggles with ALS.   I had a good college friend pass away from it 2 years ago, only 40 years old..that is a disease that has no mercy and is very painful to watch a dear one suffer from it.

Karen
Helpful - 0
9745005 tn?1410044366
Can I fear it all?  Because I do...the potential physical effects, emotional effects, financial impact, social impact, burden to my family, affects of the medicine that are supposed to "help" with having MS..and on and on..obviously I don't have a healthy grip on the possibility that I have MS =( .  But I've already experienced the above mentioned (beside medicine) without a diagnosis...so the future scares me.  

But my greatest fear and biggest worry is that whatever I have, will be passed down to my children..that would break my heart.

Karen
Helpful - 0
Avatar universal
Like Karry, my fears are being unable to swallow, breathe easily, and/or communicate.  My anxiety closet is populated by the horror of watching my mother slowly starve to death and struggle to breath from bulbar ALS. In fact, in spite of knowing better in a very big way, my id took control the night of the MS attack that started me on the way to diagnosis, and when my right arm and leg refused to work properly, all my gibbering brain could think of was, "OMG.....this is ALS!!!!!!"   Well, no, of course it was not, and I actually knew that on some level (that is NOT how ALS presents) but fear is by definition NOT a rational state to be in. My mother's manner of death scarred me, and what I (correctly) saw to be neurological symptoms (I didn't too so well telling myself it was a stroke) meant that scab got ripped off quickly. That first few days after my ER trip was a grim time.

Luckily, my rational brain kicked back in and bit of logic and perspective has set in, and I know that not everyone with MS (unlike ALS) ends up so disabled and helpless.  So as long as there is a chance that I will NOT end up that way, I am steadfastly refusing to worry about it.

Karen
Helpful - 0
5887915 tn?1383378780
I try not to worry about things that may never happen because it's just adding stress to my life. I had a family member who died of complications from her MS as she had swallowing and breathing issues (only in 30's) so if I was to think of anything it would be the innability to breathe and being reliant on something like a respirator.

I spend time with people with MS of such varying degrees and even though some have become completely reliant on a wheelchair or can't speak I have found there are always ways the OT's and such can help the individual have the best quality of life possible. There are amazing tools in this world.

So with all that said you could say my biggest fear would be relying on carers to do the right thing by me. eg To know that if I was unable to speak and used a communication device that the people caring for me would be patient and listen to my device that's saying "I have an itch on my nose so can you scratch it please." :D

Karry.

Helpful - 0
667078 tn?1316000935
When I was first diagnosed I was scared of everything that might happen. I looked at everyone I knew who had MS. Now I do not think about it. I guess getting cancer has taught me not to worry.

Alex
Helpful - 0
5112396 tn?1378017983
For me, it's not mobility. I hope to avoid cognitive impairment. But I would define this as more of a 'concern' than a 'fear'. I mean, there's no guarantee that MS won't leave me mentally unscathed only to develop unrelated early dementia. And I can't live my day-to-day based on hypotheticals and stay mentally healthy. That's just wasted energy.

I mean, I do think it's good to acknowledge our concerns, not to let them fester. I go over my neuropsych tests with my neurologist quarterly. But he also reminds me that a difference from one quarter to another is statistically meaningless. I could have an off day, poor sleep, etc. It's the pattern over time that counts. Sometimes you need that objective outside perspective.

For me the first year post diagnosis was the hardest. I walked around like Chicken Little waiting for the sky to fall. But all that worry and hyper-vigilance was for nothing. It wouldn't have changed anything and just made me a ball of stress for a year. Having a chronic illness is an exercise in learning to roll with it. This is easily said when I'm a few years past my last relapse, but that won't always be so. I hope I can maintain this perspective when I'm in the thick of an episode too.

(Having attended a school recently with many individuals with congenital deafness or traumatic brain injury, I've seen what it takes to function in the world with atypical speech. I've also tutored a woman one-on-one who had speech greatly effected by an aneurysm 15 years ago. It can take a little patience on both sides, but can and is done all the time!)
Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease