Recently diagnosed and so many questions....

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Rhonda, sorry to welcome you here but here is where you should be. The wealth of support and knowledge is amazing.
My husband was diagnosed in July of 2014. We also have had good and bad experiences with PT and OT. I find I sometimes have to put my foot down and be firm with what they can and can't do with my Grumpy. Tillie has some videos posted that have become my twice daily routine with Grumpy's arms and shoulders. Show them to your PT....I did and she was grateful for the knowledge (Thanks Tillie :) )
~Kayr
 
Hi Rhonda, I'm sorry to have to welcome you to our little family. I'll echo what others have said about your living situation, and am glad that you are working on a change. My 80 year old mother had been living with us for two years when my husband was diagnosed. I kept convincing myself that I could care for both of them, but eventually the stress of his condition and my exhaustion put her Parkinson's into overdrive and I finally had to admit that it was becoming dangerous for all of us. She has never, in her entire life, lived without family in her home. She is now in assisted living 1/2 mile from my sister and is thriving. It has taken a couple of months, but with the social interaction and activity she is doing much better and her symptoms are back under control.

My hubby tried PT soon after his diagnosis. The therapist put a band on the foot with the ankle that was weak, it slipped off his toes and hit him in the eye. That was his last visit there. Later he had PT at home following back surgery and we had a wonderful therapist. You really have to be able to advocate for yourself and know when to dismiss someone who endangers or overworks you.

Any luck finding a forever home for your horse? My brothers had horses as boys and I understand you comment about it being an entire lifestyle. I'm glad you found us and that you've joined in the conversation. Keep us posted.

Becky
 
>Of course, her current patient tries her patience

:)
 
I would love to hear more about PT from someone who truly understands ALS. I went for a few sessions, and the PT tried to strengthen my muscles and build my endurance. I went home exhausted and done for the day each time I went. I finally called and cancelled the rest of my appointments. I hope that I can get some better answers at next month's clinic.
 
Jeanau,
the only real PT should be concentrating on keeping muscles moving and ROM (range of movement for joints).

This is all going to depend on the individual and the stage any progression is at, so it has to be adjusted as time goes on.

Whatever is done it should not involve weights or cause undue fatigue.

The point of the PT is not to slow progression or help the muscles stay working as it is the dying nerves that is causing the muscle issues. The point is to keep as much of the body moving as possible and help keep working muscles a little toned rather than making them compensate too hard and keep the joints moving as long as possible. Anyone who has spasticity finds that their joints begin to freeze and have a lot of pain.

Even with ROM this will happen, but it can be slowed a little, and often it ends up having to be passive ROM, which means someone else moves the limbs for you. Massage or heat packs in conjunction often really help.

I uploaded a couple of videos of doing ROM and massage for my Chris and hand massages when he was a few months further along. I truly wish we had done more video to demonstrate more as he progressed but we were racing just to do his care.

I hope that helps. Instead of a PT it can be better sometimes to find a good massage therapist to work with.
 
Thank's for this valuable information Tillie. Where would I find the vidoes you posted? If it's right in front of my face already, I apologize. You're always willing to share your expertise, and I appreciate it very much! Audrey
 
Hello all who replied to my first post! I wanted to thank you for welcoming me and the information and encouragement you've offered.

I was doing pretty well until about a week ago. I have had many up and down days where I have noticed I'm so weak and loosing the strength in my arms and legs. I went out yesterday and fell at outside local restaurant. Not a bad fall but very embarrassing - so humiliating.

Lately it seems like I cry a lot. I haven't done that much crying and my neuro tells be there is a neurological condition where you laugh and cry and my mother and I would use that a lot when we would start to cry - we'd laugh and say, "we have a condition." But now I seem to cry all the time. I feel like I am getting lost inside me....OMG this is scary. I find that if not stimulated, I just stare into space.

Does this pass or get worse?

The ALS Center wants me to have in-home PT and OT now instead of going out. I am beginning to think this is good. I still like going out but after PT I am pretty wiped out and would prefer not to go back.

I guess I just needed to vent. I am glad you are all here.

Thanks for reading....
 
If you are crying out of proportion even without the other end of the spectrum laughing uncontrollably it probably is the condition your doctor mentioned. There is a medicine called nuedexta that helps it a lot. Ask your doctor for it. If you have ANY out of proportion laughing emphasize that too. Sometimes the crying can be brushed off as normal for PALS
 
Hope, what are you doing to now prevent falling? Do you have a wheelie walker? If your arm strength is poor maybe you need to look at a wheelchair, even at this point a manual one for when you go out?

PT sessions should not leave you wiped out and you may have to talk with the PT about this, if you do something that leaves you fatigued, you have done too much.

There sure is emotional lability and as Nikki said there are medications that can help with this. Depression is also to be considered. I would try Neudexta and see if that works first.

Keep talking :)
 
Thanks Nikki, I will look into that.
 
I would like to add a few words about my views on physical therapy. As I have noted in other posts, my wife is a physical therapist and has treated several ALS patients. This may give me some better insight into what to look for in a PT. However, these are my words, not hers.

Many PTs go to school as well-conditioned athletes. They typically have a passion for helping people improve. Yet, with ALS, improvement simply is not possible. The attempt to improve by strengthening muscles can, from my understanding, result in a more rapid decline. Yet, this desire to help us get better causes many PTs to do the very things that can make things worse.

I recommend using a bit of age discrimination here and finding a PT who is older and has perhaps toned down their zeal to make you better. I think older PTs are more capable of understanding that you simply will not get better and that their job is to help you improve your quality of life.

So, my general recommendations are:
1. Find an older PT
2. Find a PT with lots of experience
3. If the PT wants you to do exercises with the aim of rebuilding your muscles, it is time to find a new PT.
4. If the PT wants to help improve your quality of life, perhaps with stretching or movement types of activities, they may be the right PT.

Steve
 
so well said Steve!
 
My ALS started seven years ago with weakness in my right hand. I have had three surgeries since diagnosis and have no problem with any of them . I have had an appendectomy, a lumbar fusion, and a cervical fusion. Both hands are weak now but I can still speak, swallow, and breathe. If you are a slow progressor you should stay at the same speed. I know it's easy for me to say in hard for you to do but try not to panic. Immediately after diagnosis I went to a counselor and I realized what I was afraid of was the inability to take care of personal hygiene. I have bought an aftermarket bidet seat that washes and dries and has made all the difference for my lousy hands. We are all here to help you. We are all on the same journey.
Hollister
 
>I have bought an aftermarket bidet seat that washes and dries and has made all the difference for my lousy hands.

Ditto that!

>1. Find an older PT
2. Find a PT with lots of experience
3. If the PT wants you to do exercises with the aim of rebuilding your muscles, it is time to find a new PT.
4. If the PT wants to help improve your quality of life, perhaps with stretching or movement types of activities, they may be the right PT.

Ditto that!

:)
 
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