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In pursuit of hope

New member
Joined
Jul 26, 2012
Messages
6
Reason
Loved one DX
Diagnosis
11/2011
Country
US
State
Texas
City
Dallas
Hi all, I am new to posting on this forum but have read these threads frequently over the last year and have derived a great amount of strength and inspiration from all of you. My father was diagnosed with ALS last year. He is the most wonderful and supportive father and my absolute favorite person in the whole world and my whole life changed on that day. I have moved back to the city where I was raised after leaving 13 years ago following my high school graduation. We have a very close and supportive family which is a blessing and wonderful but also makes one person's pain, all of our pain. My father has had a very hard time dealing with this. He is a physician (though not a neurologist) and he knew what it was before we even went to the first apppointment. This perspective has been very difficult. Knowing what is coming, imagining the worst case scenario always. This has been crippling. He was always very athletic, a runner, hiker and adventurer. He had a true love of life and instilled this in all of us. But now he is so weak and tired all the time and his balance is so poor, it is an effort to just get to the kitchen. He has been getting a little worse over the last month and his spirit is breaking further and I just don't know how to help him. I go to see him almost every day after work and spend weekends with him and I can tell this makes a difference. Although he enjoys the company of others he does not like people outside of the family coming over because he does not want them to see him this way. I give him all the love I have in me but I just want to do more and I don't know what to do. I don't really know what I am asking for here but I am just totally lost and don't know what to do. All of the education I have recieved in my life has not prepared me for this.
 
Glad you found this forum. You will find lots of support as well as knowledge. What you will gain from here is that you are not alone as you have us to support and be there for you. Nothing will ever prepare you for this horrible disease. You are a loving daughter and being there for him is all he needs.
 
I'm sorry, I said daughter and you can be his son. Either way, it means a lot to your dad in that you moved back to be there for him and visit on weekends like you do.
 
I am sorry you are going through this with your Dad. I feel the same with my Mom. I feel so helpless!
 
I'm glad you were able to move to be close to your Dad. My daughter moved cross country too in order to become my CALS. I'm so grateful for time spent with my daughters.

Please suggest a power wheelchair to your Dad. The fatigue can be overwhelming. With a PWC to conserve the extra energy required from getting from point A to point B, he might feel like doing something else when he gets there. Many of us are very stubborn and wait entirely too long to start using adaptive equipment. Falls can be deadly or leave us PALS with increased immobility and pain. Please encourage him in this regard!
 
Thank you all for your kind words, it is wonderful to reach out and receive support! And although it is nice to not be alone, it saddens me to know there are so many people having to deal with this level of heartbreak. I am a daughter and I thank you again for what you have said.

I have talked to him about the power wheelchair but unfortunately he is not open to it at this time. Thank you for the suggestion and I will continue to suggest this to him periodically.

You are all an inspiration!
 
Hope, I'm so sorry your dad and your family are dealing with this. My family is very close too, and what you wrote about one person's pain being everyone's pain rang very true with me. It is excruciating to see someone you love go through this and feel so helpless. You are obviously a very loving daughter and I bet it means the world to your dad to have you there. Being there for him is really all you can do.
 
So sorry about your dad's diagnosis. It's wonderful for you to have moved back for all concerned. Hopefully your dad is under the care of a neurologist that knows about ALS and that he's in touch with his closest ALS Society. Please try to talk about equipment he may need in the future and try to get that ordered before it's needed. Being with your dad and family and being there for each other makes such a big difference in dealing with this illness. Take care sweet lady. Yasmin
 
Hi Feeling Lost,
I understand exactly how you feel. My dad was diagnosed in May. You are really doing a great job already by spending as much time as possible with him. I saw on your profile that you are from Dallas. That is where my dad is currently living with my sister and her family. The people on this forum have been wonderful. Feel free to ask them if you have any questions. They love to help each other out when they can. Take care of yourself. You and your family will be added to my prayer list. Kim
 
My husband has als. It hurts my sons my mom my sisters. We are all sharing it. You ARE doing exactly what you need to do. Spending time with him. Be very open about adaptive devices. Because of this forum I got my husband a lot of the things he would need before he needed them. I also told him about some cool things that he didn't know about.and then let him buy them. The best thing though...is you. Remember that.
And welcome to the forum
:)
 
My husband was just diagnosed a couple of weeks ago. He is only 39 and has always been very active, much like your father. We were also pretty sure of the diagnosis before we saw the specialist. My husband is also concerned about people viewing him as less than what he was because of the physical signs of ALS. I think that his concerns of how other will view him is wrong. Those of us that know him view him as stronger now than he ever was because of the strength it takes to live with ALS. He is truly my super hero!

The ALS clinic helped us view the adaptive devices in a positive light. We were told that using the devices are kind of a way of saying "Up yours!" to ALS. You may have robbed me of this function but I found a way around it!"

Conserving the energy of getting somewhere allows PALS to enjoy the activity when they get there. I know we will continue to struggle with the adaptations we will need to make in order to live with ALS but thinking of it in the terms of better quality time with family and loved ones instead of giving into ALS does make the acceptance of these new things in out life a little easier.
 
I hope that your father has as uneventful a walk with ALS as possible, and of course we all no how that is impossible. It may be that a lot of the tools like wheel chairs will be met with a lot of resistance. You may also find that he choose not to get a feeding tube or vent. You should be ready for whatever his choices are to face this.
 
Hawroe, I love the attitude! Great way to look at equipment needs
 
You are wonderful to be spending time with him. Just try to do things with him and that will comfort him more than you realize.
 
Sigh.. I hear ya. But both you and your family are lucky in that you are near home. I know it's hard to watch someone disintegrate but I guess all you can do is try and create as many happy memories in the time you have. I'm not talking big hallmark moments here, just the small things like making your folks laugh or bringing them flowers or whatever. You have to keep trying to tell yourself that you are doing your best to support your family. I understand the feeling of wanting to do more, that you cannot do enough - I have the same bone crushing guilt every time I drive away. Lost is exactly the word.
Second the welcome to the forum. You will hopefully feel a bit less lost as everyone here understands what the rest of the world cannot.
 
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