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thelma313

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My sweet dad was diagnosed with Bulbar onset ALS 6 months ago and his disease has progressed considerably. He can barely speak at all now and walks with a cane and wears an ankle brace for his drop foot.

I am visiting my parents in Florida where they spend the winter away from the Canadian cold and snow. They drove here and now I am worried about my dad being able to drive back. It's a 25-hour drive that my parents space out over 3 days. Also he does not have a BiPap yet and doesn't sleep well. He coughs a lot and I chalked it up to ALS until I read a post by Al on this forum where he says he needed a round of antibiotics for his cough. My mom and I made an appointment with his doctor here and it turns out he did need antibiotics for a sinus infection. Thank God for this forum! I get so much useful information here and am really grateful to all of you.

The most heart breaking aspect of my dad's condition is his emotional lability. He refuses to take any medication for it and he cries A LOT. The other day we were walking to the car and he fell. It was incredibly scary. He scraped his head on a bush and it was bleeding. He stayed on the ground and cried and cried for at least 15 minutes. It literally broke my heart but I had antibiotic wipes in my purse and tended to his scraped head and knees. He is the bravest man I know and he got up and insisted we continue our way to the car because he wanted so much to take the family out for brunch. A few days later we were eating dinner and he choked so badly he couldn't breathe. I had to give him the Heimlich manouever. I had never had to do that before. I think I saw it done on TV but it totally worked. However, my dad was terribly upset. He didn't finish his dinner. He just sat in his chair for the rest of the night looking very depressed. The next day he was okay again and had on his brave face. It's up and down and I try to cherish the days he is feeling okay. Some days he is totally listless and sad and other days he is chipper and funny. Is it like this for everyone? I am really hoping he plateaus for a while.
 

vmd

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I'm sure others will chime in soon with advice. This illness is unpredictable, but your philosophy of living each day at a time is a good philosophy in any setting.
 

sukilou

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Hi Thelma,

I get very emotional when I fall, and I've taken many falls before and after my diagnosed. I don't cry because of pain but rather because of being overwhelmed with different feelings--surprise, embarassment, frustration, grief over loss of function. When I have fallen, it's like a slap in the face and a reminder of what I can no longer do, and then I go through the whole grieving process all over again. When the feelings pass, I feel like my old self again and I can laugh and make jokes about it. All this happens with each fall, and I've been on antidepressants for a long time . For me these experiences are part of learning to live with ALS. My husband, not being a touchy, feeling type of guy, takes it in his stride, and that helps me immensely to feel more stable again. We drink coffee together in the morning and make bets with one another whether this will be a 1 or 2 hankie day.:grin:
 

thelma313

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Thank you so much, Lonna. I'm so sorry that you are going through this too.

I did get the impression that my dad was crying because of embarrassment and of course the grief of losing the ability to do the things he used to do with such ease. I must say the experience made me cry too. I held it in until I wasn't in his presence. I am sensitive and it's so difficult to see a loved one going through this. Again thank you for your insight. He's not a big talker so I appreciate the inside perspective.
 

rocmg

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hi thelma... i thought 'holding it all in' was the best way to cope with heartbreaking situations like the one you described. i felt guilty for crying in front of mum, since she is the one dealing with ALS. then a lovely lady mum and i were talking to told me it was ok to cry. we had been talking with her about mum's illness and mum had started to cry, and that just set me off. mum and i looked at each other across the table and were just crying. and the 'lovely lady' (as i call her) said to me after, 'you'll notice i didn't hush you or tell you not to cry because i could see you were both supporting each other.' i guess it's a strange way to think about things really, and it's up to you how you feel about it. my brothers never want to cry in front of mum. but the more i thought about it, it made sense as a kind of acknowledgment of each others suffering and in a way it was reassuring.

of course everyone is different, and it wouldn't do if we were all blubbering wrecks all the time. and men have a totally different relationship with crying.

i wish you fewer days like the one you mentioned and lots more smiles :D
 

thelma313

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Thank you rocmg. That lovely lady you described has a great point. Before ALS, my dad cried a total of 3 times in his life. He is not a very touchy feely kind of guy but now when he hugs, he hugs tight and he has even told me he loves me a few times, something that would have made him very uncomfortable before. I am sorry that your mom has ALS too. The support on this forum is invaluable.
 

brendapals

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I feel I just have to jump in here somewhere! I can relate to all the spectrum of emotions that ya'll are talking about. I was diagnosed 9 months ago with bulbar onset, and, thankfully, have been on antidepressants for about 10yrs. The crying comes at the oddest times, my hubby will usually say, "oh, here we go, this is where I'm beating up mom", and our boys just laugh and laugh.

Which of course makes me laugh and laugh, and laugh some more. It's not the easiest thing in the world to do, but hey, life isn't practice, this is all we get!

I know I can't relate to those with a parent with ALS. My brother had ALS, but lived far away from us. But, yes, you are all doing the right stuff-this forum is great!

Never give up,
Never let up,
Never lose faith,
brenda
 

BarryG

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Hi Thelma, I'm sorry that you're dad is not doing so well, believe me I know how he feels. I don't know anything about emotional lability and I haven't had any falling episodes (yet) but I do know that not being able talk or eat is awful. These are both essential skills that we learn at a very young age and the loss of either is both isolating and depressing because so much of our social interaction is attached to talking and eating. Even though someone like you're dad (and me) might be a man of few words those words are vital. I often get depressed because I can't have a conversation over a meal with family and friends. I truly wish that I could talk with my wife the way we used to. I'm sorry that I'm not saying much to cheer you up but I do want to say that what you're dad is experiencing is the way I often feel. I know that I've cried more in the last year than in my entire 52 years before. I haven't had a lot to laugh about but don't get me started cause it sure is hard to stop. Anyway, that's my take on the subject.
Is there any way that you or your sister can travel home with your parents? I know it's a long shot but I'm sure they would appreciate the help and company.

Barry
 

GlenBrittle

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Hi Thelma,

I can relate to your Dad.

I fall , I cry.
I hurt myself , I cry.
I get over it.

It embarrassing to cry in front of someone , when it happens , I cry some more.

Every time there is something that I cant do , a little bit of my Pride or Dignity is tarnished. That Male Ego ...

There are many that are more advanced than I with this effin disease and I am sad for those worse than I (and I just start crying) and then I realize I am not there yet. Reaches for Kleenex.

Its tough. You really need a sense of humor.

Your sense of balance makes you walk like a drunk .
You have to ask for help for stupid things like "pull that sock off will ya ?".
Offers to cut your steak. Gawd ... I'd rather just pick it up and chew on it.
The workshop is downstairs ... all those tools are lonely
Hobbling through the tool sections at stores. *sigh*
All of those things you "could" fix.
The wife has to ask someone else for a hand to do something while you are right there.
When you get a cold or flu ... holy crap it knocks you down - cant resist like before
The toys ... bye bye toys .
and the most undignified guy thing is ...... I have sit to pee.

About the BIPAP. Yep , its another machine to take away some more Pride. Tell him he will feel better for it. I have sleep apnea and use a CPAP machine. Once you have it , you dont want to be without it. It makes that much difference. But I still have to sit to pee. *sigh*

Glen
 

Jennifer51

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England
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Hi Thelma, I also agree with all the comments made especially Sukilou...I too have bulbar and have had a few falls, I just cry out of pure frustration and for what this damn disease is doing to my body...my mind is acting and thinking like I am normal, then this disease slaps you in the face and tells you different. The other most frustrating thing with me is...I have a computer with etriloquist which I love, the only thing is that by the time I have written a reply (and I am lucky I can still type fairly quickly) I 'speak', but the conversation has moved on and people have to try to back track to work out the conversation I am commenting on. It does not help that all our friends are late 50s early 60s, so their memory is not what it should be.
 

thelma313

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Thank you all so much for your insights, Brenda, Barry, Glen and Jennifer. It is much appreciated.

Glen, like you my dad is a true handy man and builder. He has a garage full of meticulously organized tools. I know that is a source of great grief for him.

Barry, we are trying to organize someone to accompany my parents on the drive home. My sister is back in Canada already and I have to go back on Friday but I told my mom that if no one is available to assist them with the driving that I would take a few days off, fly back and do it myself. Either way, I don't want my parents driving by themselves. My dad does not have the same strength and energy he had when they came here in December. And Barry, you don't have to apologize for not saying stuff to cheer me up because the support shines through. The fact that I am able to communicate with PALS and CALS means everything.

I must add that my dad often has a sense of humour about the situation too. He is so brave! I admire that so much. When he is walking I take his arm and he swats me away but I fight him and we laugh. He is being a really good sport. He took us all out for a beautiful fancy dinner and was so proud to do it. He's just a good guy who loves his daughters.
 

BarryG

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Hi Thelma, Hang on to your dad even if he does swat you away, he needs your love and support at least as much as he knows and probably more. Your parents are very lucky to have such a a wonderful, caring daughter, please let us all know how they make out getting back home. We are always here to support you in any way we can.

Jennifer, my speech therapist asked me the other day (by email as even she has trouble undrestanding me now) how I am doing with my DynaVox Palmtop3. I told her the exact same thing that you said, even though I don't think that I'm really slow on the keyboard by the time I've typed in something the conversation has moved on and what I "speak" is no longer in context. She asked me if there were phrases that could be pre-programmed in but I don't know how to pre-program a conversation, and what fun is that anyway? I can communicate but I can't converse.

Barry
 

BethU

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May 11, 2008
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I have the same problem (especially on the phone) with the conversation moving on while I'm still typing an answer to a previous question, so I have preprogrammed "Please don't change the topic. I am still trying to answer your previous comment." Also preprogrammed "Still typing" and "This might be a good chance for a little meditation. Relax and take some deep breaths."

In person, everybody stretches their necks to read the Dynavox to see what I'm typing, and they guess what I'm trying to say ... which can be distracting. If I type, "I feel" people start guessing "happy?" "sad?" etc., and of course what I'm trying to say is "I feel another bailout isn't going to help AIG."

My niece was driving me somewhere and I had my Light/Writer in my lap "conversing", and she was reading and guessing, and we're on the freeway at a fairly high rate of speed, and I wanted to type KEEP YOUR EYES ON THE ROAD ... WAIT TILL I PUSH SPEAK ...

Thelma: it's a shame your dad won't take something for the lability, but I think the changes in mood and energy are common in ALS. Especially the lethargy ... I get that, and it's because I simply feel weak all over and without any ambition. Lability meds would help that, too. When I started them, I felt like "I'm ME again!" It wasn't an artificial high, just a return to normalcy, and it was wonderful.
 

thelma313

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Beth, my dad was given a prescription for an anti-depressant back in August and I wrongly assumed he had filled that prescription but he is adamantly opposed to taking anything "psychological." I will attempt to have the conversation with him again. For now my main concern is trying to fatten him up (he lost more weight) and getting his cough looked after which we took care of yesterday. He had another bad night but his mood is okay.

Are the speaking devices fairly easy to operate? My dad has never typed or done anything related to computers. I feel so bad about the speech. The other day we were in a cafe and this man asked me very loudly and right in front of my dad, "So what's wrong with your father did he have a stroke?" I politely said no, he has a neurological disorder and the man followed it up with, "Oh is it serious?" My dad started to cry and I told him he has Amyotrophic Lateral Sclerosis and gave a technical explanation about motor neurons and I knew full well that the man didn't understand a word of what I was talking about but he just said, "Well I'm sorry I didn't mean to make him cry." Some people! I wanted to punch the guy!
 

thelma313

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Thanks Barry

I do hang on to my dad even when he swats me away. He sort of does it in a bratty way and I know he really does want me to help him but is too proud to admit it. I tell him I'm clutzy and need his help. He smiles. He knows and I know and that's all that matters. Anyway, I am a caring daughter because I was raised by caring parents and my dad has always been there for me whenever I've needed him so it's only natural that I should return the favour. Thanks Barry for your input and concern. It is always appreciated. I will definitely keep you posted on my parents' return trip.
 
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