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hope_faith

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Joined
May 27, 2009
Messages
77
Reason
Loved one DX
Country
US
State
FL
City
Fort Myers
Finally we are on the road to getting my husband the help he needs! Yesterday, he had his second appt with the ALS specialist in Miami. The first time he saw him was 4 months ago, just after he'd been diagnosed. He was a lot stonger then. Since then, this disease has really progressed rapidly. There was a big difference in what the doctor saw yesterday compared to his first visit in Feb.

His Doctor, is the medical director of the Kessenich Family MDA ALS Center. It is affiliated with the University of Miami. I know he is under very good care and feel blessed for this.

While he was there yesterday, they got him registered with the MDA and gave him lots of reading material with good information. They also gave him a breathing test and he did good on that, so he doesn't need the Bipap..yet.

He is going to be getting involved with a clinical drug trial. The doctor told him that 3/4 of the people actually do receive the drug and only 1/4 get the placebo, so I'm excited about this! I hope he gets the drug and it helps him.

We are hoping to get him some assistive technology help. Maybe Dynavox? I've read on here some people are using their devices and are having good results. He really needs something. His speech is getting worse and harder to understand by the day. His arms and hands are getting so weak that he can hardly type on his computer anymore. He told me last night it took him 1 hour to type 30 words. This is so sad, he loves his computer. If you have any recommendations on different assistive devices that would be helpful, I would love to hear about them!

I finally feel like we are getting the information and help we need. I'm very overwhelmed at the moment on how much we/I need to learn and reality is just setting in.

Thanks for reading...

Judi
 
Hi, Judi !
Sorry to hear about your husband's progression, but glad you are getting the info and help you were looking for.
There is alot to take in at first, so it is overwhelming; pace yourself- you don't have to read it all at once. And don't forget to take time to just "be" together.

I don't have anything to offer about Dynavox or other assistive technology, as we aren't there yet. I'm sure others will jump in here; there are many here who are very helpful about these issues.

In the meanwhile, check the search feature- I'm sure you will find lots of info.
Rose's thread on assistive technology is particularly helpful !

Don't forget to breathe-
mare
 
clinic/clinical trials

Dear Judi

Any help we can get for our PALS is such a relief. And that is great that the bipap is not needed just yet. The clinical trials are great and take advantage of them. George, unfortunately because of his low FVC's of 18, is not even a consideration in the trials but he always asked the doctors to sign him up without asking as he would take part.
Doctor usually just smiles at him. Don't want to take any hope away from George.

Keep up the positive attitude as that accounts for 100% of this stinking disease and we will be here to encourage you and help with as much as we can.

Take care.

Patty ;-)
 
Hi,

My wife has the dynavox, and it works great! We purchased the open key so it can be used much like a normal computer. She can surf the web and still communicate. If your husband is computer literate, he will love it.

Paul W.
 
Hi Judi!

Glad you feel you are getting the support you need for your husband.

y'all hang in there!
 
Thanks everyone. I appreciate the support.

The ball is rolling...My husband heard from the rehabilitation hospital in North Miami today. This is where he will start receiving all his services from now on. I guess they have a whole team of folks that will be caring for him. I believe this is where he will be started on the drug trial as well. His appt is for June 17th. The past two times he's been to Miami to see his ALS specialist, his dad went with him. I couldn't go because I'm needed home to be with our son who has autism. I've got it arranged so I can go with him this time, and I'll be able to meet his team and ask lots of questions.

Paul W.- Thanks for the Dynavox recommendation. My husband is very computer literate. He has many sites he visits and will benefit greatly from some kind of assistance. He even comes to this fine site!

Patty- I'm sorry your husband doesn't qualify for the drug trials. That stinks. I'm not sure what FVC's are, but maybe they will increase and he can one day get into a trial?! Hopefully....

Take care all~
 
Hi, Judi-

Good luck tomorrow. I hope you get lots of info. that you are looking for, especially with the assistive technology stuff. Be sure you have your list of questions!

Also, in case you didn't see this before- pack a lunch. Depending on the time of your appointment, you might be there over lunch time and not all places have food readily available. You husband probably wasn't there this long before (3hrs.+) so he may not be aware of this.

Be sure to report back-
mare
 
Hi Mare- Thanks for the lunch idea! I will update when we get home. I might not have a chance until Thursday, being it will probably be late when we get home and I know I'm gonna be one tired person:)..

Judi
 
Hi Jydi,
I hope you two have a good experience you are such great new members, and we surely are fond of the both of you.. Keep us posted, and hugs on a good clinic appt.
 
Update From Our ALS Clinic Visit..

Yesterday, my husband had his first appt at the ALS clinic where we met his team of therapists and doctors who will be treating/helping him. It was very interesting how these appt's work.

We sat in a room and his team came to see my husband, one at a time, for about 25-30 minutes each. The first was the respitory therapist. My husband got the thumbs up from her. His breathing is still good, so they didn't recommend the Bipap just yet.

The speech therapist was next, and she offered lots of good suggestions so that my husband won't get so worn out from talking and eating. She also gave us the RX we needed to get him his AAC device. I made an appt for July 8th at Nova Southeastern University for my husband to go their speech and hearing clinic to try out different devices and see what would be best for him. The problem is they only do this once a month and we got the last appt available for July, and it's at 9:00 AM. We live 2.5 hours away. My husband moves very slow and it takes him a couple hours to get ready to go anywhere, which would mean getting up at 4:30 AM to leave by 6:30 to make the 9:00 appt. I don't think going the night before would be a good idea either, having to stay in a hotel. My husband isn't getting around so great these days and I fear staying any place but home, might cause distress. Our other option and the one I think we may have to go with is to have a representative from Dynavox come to the house with all the different Dynovox products and have my husband try them out and go with one of them. I know Dynovox is a very good product, so I wouldn't feel bad if that is what we decide to do.

The physical therapist was next, she's going to start the process of getting my husband a power wheelchair. He isn't at the stage where he needs it right now, but he will soon and the therapist said it takes months to get one of these things so...we're jumping on the band wagon now for that. She also gave us an RX for a rolling walker with a seat for him to use now, especially when he gets tired and is feeling weak, which seems to be a lot lately. She has also ordered services from an occupational therapist to see him.

A psycologist was was also part of the team, which was good. I was glad to see mental health part of his team.

Hopefully my husband is going to be starting on a clinical drug trial soon. I will keep you updated on that when I know more.

It was a long day yesterday, but I was pleased with the outcome. I now feel like we are getting my husband's needs met.

Take care~
Judi
 
Hi Judi,

I am glad you are getting things put in place. I am also glad that you had a positive experience with the team. You cannot be too prepared for what you will need in the future.

Say Hi to hubby from me.
 
Hi judi,
glad the breathing test went good, that is important. Could they put you on a cancelation list? or like you said maybe Dynavox? I hate to see you guys have to travel and such so maybe that would be the best idea. Thank's for the update, take care of yourselves, your both absolutely delightful, glad you both found us, you guys are such nice people.
 
Hey Judi,

So very happy you got some help for your husband!

Having the Dynavox rep come to your house sounds like a good idea. Putting your husband thru all that to get to an appointment will take a lot out of him and he may not be up to taking in all the info presented. I know traveling physically and mentally exhausts my husband and he has to rest or use medication to get him going.

Wish you the best!
 
Judi, I'm glad that you had a good experience with the clinic. My clinic is run the same way, they all come to see you one after the other. We have to travel for 3 hours each way so it is nice that our appointments are in the afternoon and can drive home after. A tiring, long day so I agree, let them come to you if you can because they are healthy and are getting paid for it.

Barry
 
Hi, Judi-

Glad you had a productive clinic app't. It is reassuring to know that there are people who have a plan and are putting into action, isn't it?
Hope "Mango" feels the same!

mare
 
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