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wewillbeatthis

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Hello my ALS Family,

First off it has been so long since I have been on. For this I am sorry and will make it a point to come on more. I promise.

Well update on me we are having a boy and he is due in August!

Dad is doing well basically the same as he has been for the last five plus years until the last couple of weeks. Things have slowed at work and this is a stress for him because he worries so much about money and jobs coming in. Dad likes things to run smooth. When they don't he will dwell on it like you would not believe.

So this is how things have been since about last Saturday so we are going on 10 days. His voice has been very slow, a bit slurred, and nasal, gait very, very slow, and balence having to hold onto the walls or whatever around him a must, getting up from low positions like the low couch he used to sit on it and then swing himself over to the table and push himself up. He has been taking a bit longer to get up the steps.

So come this Sunday his voice was getting back to normal no slurring at all, slow but not really, and the nasal just about gone. When he drinks his water it is much, much better but he does not like to drink anything nor has he ever.

Walk a tiny bit better since Sunday as well and then today he was really holding onto the car when he was walking and then down he went lost his footing and or balence not sure which. Dad uses the rolator and does fine with that but uses the cane to get in and out of house and up and down the stairs and to move all over room to room. When he uses it he has it so far out to the side that just a tip of the cane is doing work for him and he has been told that is wrong but does not listen.

My question to everyone here is could this be the stress? Could things go back to the way they were little by little or do we have more going on here? How often should you do ROM, what other exercises should he be doing, and how much liquid should one drink, and lastly what is the correct way to hold the cane?

Is getting up from low places hard for anyone else? He is much better in chairs with arms he uses his arms to push himself up and down.

Does anyone else hold onto the walls or objects around them when walking and if so why and what does this mean?

I appreciate any feed back you can give. I am so scared right now I want dad to be ok and be around for a long time and when he has these bad weeks it just sets him off and I feel like things are getting bad. Can one have a flare up and then bounce back after the stress has gone?

Thanks for your answers.

Jen
 

Geo

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How Long has he had this ? I have PLS and this sounds like me . havent heard of getting better though.
how old is he ? i was 55 when first symptoms came 63 now . Geo
 

wewillbeatthis

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Hello Geo,

Dad started with us asking dad is your foot bothering you it looks like you are dragging it. This was in mid 2002. Then he started the tests and all with the doc's and as the time went on little by little it started to be a gait issue and really he needed a cane or he would not feel comfortable walking in front of people and or far distance. 2004 they advised it was a Motor Neuron Disease and they feel it was very slow progressing ALS. I would say that dad gets a bit slower every other year and then stays the same. He goes to the doctor every 8 months or so. They say his strength has not changed at all and in some areas he has gotten stronger. His motor skilss or great and his fine motor skills are good. His upper body is fine and his breathing, eating, and swollowing are fine as well. Really it is his gait which is bad and he needs the rolator for anything more then up and down stairs in and out of houses and or cars and stores. In the houses, stores, work he needs the rolator. When he is realy stressed he is even slower and he has no balence and this is when his voice goes from 95% to about 85% then within a week or so the voice is back to 95% and the balence is back and gait is better. Dad is just about 66 years old. Which means all of this started at age 59.

You say this sounds the same as you. Do you use the rolator and have been stable for the most part but also have good and bad days and or weeks and then go back to the 90% days?

Thanks for the response and I look forward to hearing from you again.

Jen
 

CindyM

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Hi Jen- First of all I want to congratulate you on the new baby! How wonderful! We have 2 new baby boys born this year in our family. Connor was born early January and little Dan is just a week old!

I thing with MND any stress or overwork will make a person weaker, and by the same token if he is well-rested he might feel stronger. It is not that the disease is going and coming- just his body's ability to weather it. But I am not a PAL and certainly not a doctor! Other might have a different take.
 

Shatzie

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I have bulbar onset and my slurred speech is worse when I haven't had much to drink. It has been harder to get hydrated since I had to start thickening my liquids, I don't seem to want to drink as much when they are thickened. Then if you drink any caffeine it dehydrates you more, so you have to make up for the lost water. I try to sip throughout the day, even if I am not really thirsty.

I know my overall symptoms seemed to worsen a bit right after my diagnosis. Every little thing caused me to think, "Is this getting worse? How long before I can't talk? Etc." After a few weeks of my mind running away with me, I was able to learn to concentrate on now while slowly planning for tomorrow. So I think, at that time, my stress and worry made my symptoms worse, then they went back to where I was right before my official diagnosis.
 

wewillbeatthis

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Please Please Help Last Night and This Morning Was BAD

First off thank you for you responses.

Dad actually started to get back to nomral as I said starting Saturday evening into Wednesday and then Thursday night and so far today we are back to really slow walking and off balence, speech very slow and slurred. You know it is almost like all the muscles and nerves are the same and everything that is going on is mental. Dad is going through something. Example: I said to him dad say Peter Piper and he said is slow, nasal, horse, and a little slurred. Then I said drink water and say it again he said it much faster, no nasal, no horse, and no slurred speech. I looked at him and said see and he did not know weather to laugh or cry. I took him and ensuring he would not fall and shook him and said why are you not helping yoursled. I nugged his arm a few times and told him you are hurting yourself and I don't want you to get sick and dye because you can't get over what is going on. He says nothing is going on. My family says this is me and I am looking at it to hard. No, No things are harder for him these past couple of weeks. It's like me can't be bothered and is just going through the motions. Does this make sense to anyone and please tell me what to do.

I am so angrey with my dad that we are becoming violent to one another him with words to me and me with words to him. Then I get so mad a shake him, nudge him, grab his face. This is my dad and I respect him and love him. Lately I have lost the respect but love him even more...

What do I do
 

cukita99

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please dont tell ur dad to help himself. i hate when they tell me that. dont u think we would if we could. there r times we can n times we cant. we cant help what we r going thru. we need lovee n patience. i know its hard for u as it is for us. i have a 18yr old that often loose his temper with me n it hurts me. i know he loves me but we wont b here long so b patient.
 

Lorie

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wewillbeatthis-Disrespect

No matter what yor Parent or Parents are Dx with. You should not treat him like this. I have always believed in Honor Thy Father and Thy Mother no matter what the situation is. I try to treat everyone the way they treat me. I would never consider treating my Brother Tim that has ALS like this. Do you know what it feels like for some to feel helpless and know that they are slowly Dying and from what they are Dying of?
You should do for your Dad. He is the only one you have. I wish I still had mine, he wasn't perfect. But I loved him. He died at age 58.


Lorie
 

brooksea

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Jen,

I'm not really sure where you are comin from as far as telling your Dad to help himself.

You must understand that your Dad has to be experiencing a sh#@load of turmoil, trying to handle a business and dealing with ALS. Stress is a major contributor to a PALS symptoms getting worse. From my own experience with my husband I can see stress immediately exhausts him to no end and worsens his speech. We have dealt with some major stress in the past month and his attitude as well as physical symptoms have worsened. Now that we can see light at the end of the tunnel, his attitude of course has changed, and he seems to have more energy.

Please try to be more patient with your father. I know it is hard and frustrating to stand by and watch the one you love deteriorate before your eyes, but you must find the strength and compassion from within to help in any way you can. He may truly not have the energy or the wits about him to "try to help himself," as he probably has so much going through his mind. You must be his rock!

Is it possible for someone else to take over more responsibilities in the business? Your Dad might welcome the opportunity to give some responsibilities to others to ease his load. Just a suggestion...
 

wewillbeatthis

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cukita99 I hear what you are saying. However, I know my dad and I know all to well that he has a one track mind, he dwells on things and he has made himself totally out of it these past two weeks. The diesease is hard and I don't for one mintute take that away. However, it's hard to be patient with someone that is not drinking water when they see how much better they speak after it, stretch more often when the next few days they indicate they feel so good like rubber. I will keep it in mind and never say again help yourself. However, I think it is important for you to understand why I said it. Also, I believe that my dad will be with us and alive for many years to come in fact I have no doubt about it. So my patience are not just for today they are for years and years to come. I believe that positive attitude can go along way and when one is down the person suffering from ALS or the person that takes care of the person suffering they can come to these places and vent. Thanks and God Bless you and your family...

Lorie I agree and this is why I have come to the board because I feel myself spinning out of control. My dad is a stone and I am often a stone for him. However, these past couple of weeks I have given him what he has taught me and that is to be tuff with the one you love if they need help waking up and thanking God for what they do have. I don't for one second discount what is going on in his mind or body and find myself crying and praying often that he continues to deal well with this and that he continues to very slowly progress or stay the same. I also remember to Thank God when things are going well for him and when things are so so but he is still doing well. I do a great deal for my dad. My dad has lived with my husband and I for the last 2 1/2 years. I cook, do laundry, clean, and go places with him. Dad is still able to do most things on his own and again for this I am thankful. My frustration is why all of a sudden he has decided to take things that have nothing to do with the disease and dwell on then that have in fact has caused his disease symptons to highten. He has done this before and they always go back to what the normal has been for the past seven years. I just hate that he keeps putting him through the bad days when he does not have to. As for your comment about dying. My family does not look at this disease as dying and I am sorry that you do. I think you should try to look at it as a change in life. With the help of your inner belief in God, mind over matter, family and friends you can beat this and when things come your way because of the disease go through the motions and then find ways to do the things that you did before a bit different. I am sorry if I have upset you Lori that was not my intention. I like you am the one in the family that puts everyone before me. I am pregneant with my first child at 34, live with my husband and dad, have a great relationship with my mom, my brother, sister in-law, and in-laws and although they love me the same they know that I will put them all before me and sometimes without realizing I think that this is taken advtantage of and that hurts... We have to take care of us as well, and most important point out when someone is not doing there part in taking care of themself. Not drinking your water to ensure you don't get dehydrated and or keep your palet wet is not mean it's careing. Perhaps the way I did it was wrong and I will change this.

Thank you

jimcrat You are so right and myself, my husband, my brother, and my dads men have taken on more duties. Work is slow right now and this has him dwelling. His vitamins were not in few a couple of weeks and that had him dwelling. All the things he has in his mind are things that he does not need to dwell on honest the disease is the last until he drains himself so much that then the disease is termporaily effected. This is where I am coming from. I am going to try and be more patient. My first step was coming here and getting advise on how to get him to do the things that help him without getting so mad at him. Trust me I go through each day sorry for the way I said something or did something because my dad is my dad and I love him SO SO much.

Thanks and I would appreciate anyone advice anyone can give me but please don't attack me this is not why I come to the board. I don't have ALS and nor to I pretend to have it or think for one second that it is easy to live with. However, someone I love with all of my heart does have it and that is a big deal to me....

Jen
 

cukita99

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jen, im sorry. mayb b/c ur pregnant changes everthing. i do thank god every morning for giving me another day to live. just try to not push your dad to much. he knows what he can do n well eventually do it. i have bad days but more good ones than bad. just b there for him. its ok to vent, we are not attacking u.
 

brooksea

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Jen,

Does anyone else hold onto the walls or objects around them when walking and if so why and what does this mean?

I'm not sure you understand what is really happening to your Dad. He is holding on to things because he is losing his balance due to muscle weakness.

As muscle is lost weakness follows.

Could things go back to the way they were little by little or do we have more going on here?

Things are not going back to the way they were unless "WE" find a cure! Stress episodes will cause increased fatigue (IMHO) and he may go back to "pre-stressed" level a couple of days later, but you really don't go back to normal with ALS.

I haven't read all your posts and can't remember if y'all have registered your Dad with the ALSA or are going to an ALS Clinic. You might need to get some info from them.

Good Luck!
 

wewillbeatthis

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Jimcrat,

Oh I know he won't go back to normal unless we find a cure..... I pray for this each and everday. I mean back to pre-stress levels....


Dad does go to clinic every 6 months or so.
Jen
 

CindyM

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Jen- First of all congrats on your pregnancy if i haven't said so already. Being pregnant means you need to remain as emotionally calm as you are able. If you enjoy these months you will be happy and your newborn will be calmer, IMO

I hear the love you have for your Dad. And your screen name is very interesting. My own plan is to fight to keep an upbeat attitude and enjoy what I am able to do, not work myself into a turmoil over trying to fight the inevitable. I guess what I am really trying to say is that maybe things would go better for you if you let go a little. You probably cannot change Dad and most certainly you cannot change the course of his illness.

This is just my opinion, of course. I hope you don't mind my sharing it. Cindy
 

Marjorie R. Wilcox

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It will be alright

Jen,
I see you wrote this post a few months ago, so I hope things are going better for you. I am a little experienced at observing how people react to a patient's decline since I have been a caregiver to the dying or disabled several times thusfar.
I know that you are stressed. You have a lot on yor plate and so many responsibilities. Take time to sit down and figure out how to delegate some of your work to others. If someone offers, take them up on their offers, or even seek them out to do something for you.
You are a very caring, loving person. I can see that in your comments. And I do realize you are losing control at times. I know about that too, as I used to scream in my husband's grandmother's face for things she couldn't help.
It helps to realize that you want to make your Dad's life comfortable and loving. He needs to know only that you care and you love him so. Caress his face, kiss his face, and offer him liquids while holding the straw. Hope that he will and is able to take sips so that his health will improve...... but don't demand it. Let him make the decisions.
This will be over, and sorry to say, it will likely end in his early death. You want your memories of him to be sweet.... and with no regrets. Force, insults, and unkind words won't work and will only cause bad feelings. You must take every moment to consider his feelings.. He certainly knows he is becoming a burden. He sees that you are not demonstrating joy in spite of your hardships. Try to delve deep and bring forth sunshine. You are having a baby or recently did.... You are very blessed.
You have it in you. You are a sweet and kind person. You have offered your home and your wonderful care. Don't let the stress get to you. At these times, talk to yourself, even out loud and say...... I will smile and touch him with love, even if I have to do a "dirty deed" for him.
It won't always be like this. It will be over and you deserve praise for all you have done and are doing. I believe fully that there will be a special place in Heaven for caregivers.
I hope you take my words as encouragement and not criticism, as they were meant.
God Bless you. Marjorie
 
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