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What is most difficult for you?
What is the most difficult thing for you to do physically, now that you live with ALS?
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19 Replies
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Hi Dagmar,
Everything is difficult to do now. It takes me 5x longer to do anything. But for me personally, the struggle is not so much the physical aspect, but the bitter pill I need to swallow mentally on a daily basis reminding myself it’s okay to ask for help.
Mick
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I used to think asking for help was a sign that I wasn’t a good enough human to do things myself. Being independent is not an all-or-nothing mindset. Know that others “want” to help you, and giving them the opportunity is helping them too. Struggling is a waste of energy – – I say, ask for help when needed, and save your energy for activities that are important to you. 😉
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Dealing with the pain. I also have Ehlers Danlos and that makes everything hurt.
Mentally, it’s living on the ocean and golf course and not being able to go in or play golf.I was an avid runner, golfer, surfer, biker before this hit. I can’t even do yoga because of the pain.
I can still walk around the condo but have to use the wheelchair even to get to the pool.
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Eating I’m losing the use of my hands.
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The greatest difficulty I have now is the limited use of my hands. As an artist and writer, my creativity and expression is now severely limited, which leaves me stymied and seeking new means of expression. Ease of eating, turning pages, opening anything — we take so much for granted, but for me, loss of arm strength and dexterity are worse than garbled speech or balance issues.
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Difficult to me is the weakness of my neck (I use always a collar), swallowing problems, speech disturbance, weakness of my arms and hands, but the most difficulty is when I cant breath well, I use the cough machine 2 times a day to extract phlegms from my throat and lungs.
Fortunatelly I am in possitive mind and fighting to continue being alive
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Losing the ability to speak April 2023 and trying to use a text to talk app to make important phone calls.
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Breathing is most difficult all the time but trying to shower and shave is close. Thankfully it doesn’t need done as often as breathing but a shower is something I dread.
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Mick. I am with you
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Moving fast….especially when I’m late or people are waiting. It’s just impossible to move any faster than my ALS-slow-motion speed.
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Fine movements with right hand, loss of strength in right arm.
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I’m sorry for everyone’s pain and difficulties. I wish for everyone that this disease disappears much sooner than it’s been around.<div>
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I know that most everyone will think this is crazy as I do myself. I first showed muscle atrophy in my right hand in 1996. I wondered why I couldn’t open the scissors I was using at the time. The following June I was DX with this terrible disease.
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At this point I knew that the Drs couldn’t fix me so there was no need to sit around and dwell on the future. I needed to get busy.
I decided to take control of my life and help my family get through this. After all I needed to see my Daughter graduate from highschool. The Internet was new to me at the time. I started my research and it continues as of this writing. During my journey I have had many diseases presented to me. I may have Motor Neuron Disease aks ALS, Charcot-Marie-Tooth disease, another one that’s a mouth full, Multifocal Motor neuron with liability to pressure palsy, Progressive muscular atrophy.
Fast forward through the years, started on Rilutek 1997 among with a regiment of 52 other pills daily. This continued for 10 years. I asked for a muscle biopsy so they could look at how my muscles were deteriorating. At that time research showed that ALS patients muscles deteriorated in a particular way. The biopsy results confirmed that mine were doing the same thing. I asked for IVIG infusions knowing that they did not improve or help ALS patients but should rule out diseases that mimicked ALS. Two rounds of this years apart with 2 different neurologist. 1 in Arizona the other in San Francisco. I even had to call Bayer in Pittsburgh and get the drugs shipped directly to my home after I convinced our local Hospital to help me.
My neurologist at one time said I should get a new test they just developed for ALS. She told me about it and I told her I already had that test. She argued with me telling me it was just approved. I said I know, I was part of Dr Alan Pestronk study of his Covalent gm1 antibodies test he was developing. She didn’t believe me so I asked her to contact him and verify. She did and at my next visit she apologized.
I went home one day and told my wife I’m done with these meds. They aren’t making me feel any better while devastating our financial situation. $16,000.00 a year out of pocket expensives so I stopped. I stopped all meds as well as going to doctors.
<font color=”rgba(0, 0, 0, 0)” face=”inherit”>I have had 7 different rounds of EMGs along with the nerve conduction studies that usually done at the same time. Crazy thing is I have asked the Doctor myself for some of them. I </font>remember once<font color=”rgba(0, 0, 0, 0)” face=”inherit”> telling my Dr that this was my second round these test he said ” That’s 1 more than any patient should </font>have<font color=”rgba(0, 0, 0, 0)” face=”inherit”> to endure”. I ask my Drs as well as the Technicians that perform them, if they have ever had these and I think all have said no. I tell them they should do they understand what their patients go through. Word of advise thought don’t say right before the test ” If you don’t hurt me I won’t hurt you”, they don’t thinks it’s funny.</font>
I’m back on meds taking the 3 R’s. I have sent a copy of the alphabet to the drug manufacturers so they can see there are 25 other letters they could start the name of the next new drug with. Starting Rilutek, Radicava, and RELYVIRO all at the same time is confusing. We are faced with the fight of our life and they go and decide to only use the letter “R”! Holy heck guys think about your patients. Life is hard enough to begin with, add in this disease only use one letter. As Joe would say “Come man give me a break”!
Life continued as well as my very slow progression. Over the last 28 years I have seen 14 neurologists. 10 of them have said ALS. Most of them used the term Motor Neuron Disease I guess to soften the blow. I have been asked several times now, “How do you feel about getting all these different diagnosis from your Doctors”? I tell them it’s okay, it’s when they all agree that I’m in trouble! I was at my Daughter’s highschool graduation as well as her college Graduation!
Well I’m sorry for not sticking to my comment “fast forward”. GOD’S speed to everyone, have a blessed day and remember every day is a holiday!
Yawls friend,
Timmy
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I think at this point its not being able to speak. I cant tell you the number of times my spouse asks a question, I try to type an answer and he gives up. Then I give up and get angry. A little patience here as he’s saying “work with me!” And i truly miss PIZZA!
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By far the breathing and all the annoying equipment to help it like Bipap and the Cough Assist and suction.
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At the present time, the loss of strength and dexterity in my hands is the most annoying. My very sensitive throat and my garbled (but mostly understandable speech) are a close second. However, I’m grateful that I can still walk without assistance, drive and continue to enjoy most of the activities as prior to ALS. Grateful!
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Accepting that I have lost my functioning, my home, my belongings, my independence and my future.
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Having been a linguist and singer, what I miss most is my voice. I figured out early how to speak French and Spanish by typing what I wanted to say in French and Spanish in Google translate and it would read it for me with proper pronunciation! And I have a tobii dynavox device and speech assistant on my phone. But using these substitutes is slow and frustrating. Writing on a tablet is a bit faster, but also not the same as speech.
Not being able to eat or drink also makes life difficult. I’ve gotten used to the feeding tube and still enjoy aromas. I remember what things taste like.
Harder still was losing the use of my left hand and arm. I can no longer play the guitar or the piano, I can’t quilt anymore and everything else is difficult. But I managed to embroider our Christmas tree skirt design for the last two years with only one hand and sewed a button on last night.
I’m losing strength in my legs and neck and have been struggling with neck, shoulder and back pain for a while now.
But hey! Nothing is easy with ALS and it’s important to remember that attitude has everything to do with how much you can enjoy your life. Keep trying to find ways to do things. And substitute new activities and hobbies for the ones that are no longer possible for you. 😊
Janet Neckyfarow
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With my “ALS-voice” I find it difficult to realize when others don’t understand what I’m saying. I get frustrated and say it louder – – which doesn’t help at all! I should take a breath and speak carefully and with normal volume. Ha! Why can’t I do that the first time?!
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can deal with the weakness in the limbs. I am grateful that after 5 years of being diagnosed 8 years symptomatic that I am still somewhat independent. Yes there are things that are becoming harder and exhaust me but that comes with the territory. If I can still put in earrings (even if it takes a ½ hour) I take it as a win for the day.
For me the hardest thing to accept is the loss of speaking and the hyper saliva. People around me say that they can still understand me when I speak slowly but it’s so frustrating. I also miss eating by mouth but have found that you can liquefy just about anything. I can still taste my favorite foods through a straw.
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