clinic visit today...feeling down

[azgirl]

Good news first, breathing still normal, high 90s

Bad news: fasics now noticeable in tongue which has me really scared.
Weakness in left leg and arm increasing but still can get around with walker. I asked about wheelchair referral since I've read about how long that can take. They gave me the referral but I reAlly don't want to go.

Really feeling down, scared, sad.

Noticed that my summary from check out had FU ALS typed on it for reason for visit
Appropriate abbreviation for Follow Up, don't you think

 

[swalker]

Making the decision to start the process of getting a wheelchair was really gut wrenching for me. I debated quite a bit and finally decided I would need one sooner or later. That thought coupled with the admonitions to avoid falling and conserve energy along with the stories I heard about how long it might take prompted me to decide to move forward with procuring a wheelchair. I thought I started the process way too early.

I am so glad I did. It took just over 4 months to get the wheelchair. When I started the process, I knew that i was doing it too early. By the time the wheelchair finally arrived (less than a week ago), I was delighted to have it. I can still walk short distances, but now with my wheelchair, there is no practical limit to how far I can go.

The place I worked with on the wheelchair had a large warehouse and they let me have the run of the place in a variety of wheelchairs. It was very liberating to go wherever I wanted to at the push of a joystick. I had not realized how limiting my walking was! It really helped me to see the advantage of having a wheelchair and allowed me to try quite a few different styles. I have great confidence in the once I selected.

So, let me a voice of encouragement to start the wheelchair process now. I found it very discouraging to contemplate, but once I used the demo wheelchairs I was hooked. It turned what seemed like a negative experience into a wonderful experience. And, all the people I worked with on it were absolutely wonderful. It was a very uplifting experience for me.

Steve

 

[Nikki J]

Great news about breathing. I am sorry about the rest. Hope your wheelchair eval goes as well as Steve's
Re the tongue of course it is scary! Are you doing modeltalker? Is it important to you? I think over the next few weeks I would develop emotional lability ( wink) and need to start Nuedexta. It seems also to help some people with swallowing etc so I would want to give it a try before I noticed problems!
Hope today is a better day

 

[krnNdug]

@azgirl...glad your breathing is doing well...I can only say having the chair is better than waiting for it when you need it, but the ALSA has a bunch in the loan closet you can use until yours gets in, but again, I would get it way before you need it (it also takes getting used to and it is better if you have more function in your hands to learn)...you should make sure to talk with Kim with ALSA...she can help you with the wheelchair process...she knows all the DME people in the state and she can help you with possibly getting the elevate function...I am 6'5" and have a tall seat and even I like having that function...it was added at no cost...

I go to clinic in 2 weeks in Phoenix and I know my breathing is down and I can feel some wetness at the corners of my mouth, now some weakness in my fingers...I guess we are all on the same trajectory, just at varying speeds...

I wish you well.
Doug

 

[affected]

Noticed that my summary from check out had FU ALS typed on it for reason for visit
Appropriate abbreviation for Follow Up, don't you think

Ha, totally appropriate.

I hope you are feeling a bit better now a couple of days has passed. ALS is indeed a scary disease, I'm so glad you can share your feelings here.

swalker your post about your experience getting organised for a pwc made me smile just so much, that's attitude!

 

[Nuts]

How frghtening this progression is. Like Tillie, I hope you are feeling a bit better.

Please do go get the PWC on order. By the time it arrives you may be delighted to have it. Nothing will stop the reality of what you are facing, but the chair can restore a great deal of freedom. I can just see Steve zipping around in his--Matt had a huge grin on his face when he got into and shot off on his own (and he fought it for a long time).

 

[anderkling]

I share your fears and feelings. Every one of us faces the ravages of this disease as it progresses with all the accompanying emotions. It is unimaginably hard. You are not alone. We share your pain. My thoughts and prayers are with you. I lived in AZ for 8 years. If only I could come see you for a visit, but I live too far away. My neuro told me not to pay attention to the fasics as signs of progression, since their presence isn't indicative of rate of progression. I hope he's right.

 

[azgirl]

Ok, I realize I'm probably being stupid and oversensitive about the wheelchair, but it just seems like admitting that the end is coming soon. Steve, you helped me feel a small bit better about that, so thanks. I already do enjoy my scooter for taking the dog for a walk or going to the zoo with my little grandson, so really what's the big deal about the damn wheelchair?

Nikki, I did already complete Modeltalker. It sounds pretty good, a little like a boring me, since there is no real inflection...something I use a lot of! Glad I did it, though, and would recommend others put in the time to get it done.

I had to shape up yesterday as two of my best friends got married, in my backyard, with me performing the ceremony! It felt good to be able to do something useful and give back to others who give so much to help me out. These friends have been together for 27 years and raised 2 great kids, but were unable to marry until now when same-sex marriage finally became legal in our state. I'll add a picture of us after the ceremony

So, life goes on, and I'm still struggling with another chunk of me being taken away, but it's a beautiful day and it's time to go for a swim. The support from all of you here means a lot, too. I'm trying...

 

[slopokahontas]

I was wondering how your clinic visit went. I think the truth is, we will never leave a clinic visit with good news. I understand how you feel about the wheelchair. I know with even using a came,I feel like I'm submitting. I suppose we could choose to see it differently and be grateful there are such fancy chairs now to allow us to continue enjoying life. My friends mom was stuck in a bed with an iron lung in the kitchen, for years. My friend,Rachelle, works at Numotion where the chairs are made here in Tucson. She tells me all about the frustrations of insurance etc. She has said to get all the upgrades with the chair now, like had rest etc., because it's a huge hassle for patients later! So glad your breathing is good! I love the picture, that's so exciting you got to be such a huge part of their special day!

 

[affected]

what a beautiful photo of a wonderful day xxx

Keep venting here about how you feel, it has to be let out and it's all totally valid. This disease SUCKS and it just keep taking and that IS scary, and makes us all angry.

Being able to say it and have it acknowledged doesn't fix or change things, but it can let that tiny bit of steam off that we all need.

love you girl

 

[Lilacs53]

Azgirl, I'm glad you are feeling better now and that is a beautiful picture, thank you for sharing it. Can you tell me what "Modeltalker" is?

I understand the hesitation about the wheelchair. I felt the same way when my husband talked me into getting a cane back in March 2014, and then after a fall, I graduated to a walker. Just last week the ALSA dropped off a powered wheelchair and folding ramp along with a sliding shower chair and toilet riser. The chair is nice, but I have only sat in it once. I just feel like I'm giving up another part of me...like I'm giving into the disease. Is that how you feel or felt? I have to admit that the one time I did sit in it I was surprised by how fast I was able to get from room to room, which made me happy for a couple seconds until I realized how much it takes for me to just walk. I know eventually I will be in it and I should try it everyday to get used to it. I have to be very careful tho, because it's a little tight trying to get through the bedroom doors.

One thing with the sliding shower chair for anyone who is planning on getting one, you will also need to get a handicap shower curtain. The regular ones are useless with the sliding chair.

 

[azgirl]

Modeltalker is a computer program where you record about 1600 phrases. They take those phrases and parse them to isolate each sound and use them to create your "voice". It can then be used with speech generating devices (SGD) so that it will sound like your voice rather than a computer generated voice. It was a little time consuming to record, but I thought it would give me an option when speaking was not possible. My speech is not yet affected, so I haven't used the completed voice rather than to just play around with it.

Check it out at modeltalker.org or do a search on this forum for voice banking.


About the wheelchair...it still feels terrible, and I imagine it will be very hard to go to the evaluation, but it is inevitable so I guess it's better to just go and get it over with.

 

[hjlindley]

As my durable medical equipment guy said, the sooner you sit the longer your legs will work. I got mine over two years ago and I can still self transfer to the commode or the recliner. But it's great when I go grocery shopping with my aid or restaurant hopping with my husband. I did get the riser as well, I am 6 feet tall but have extremely long legs. Besides I love being able to rise up to the bar tops in all of my friends restaurants. It's not the beginning of the end by any matter of means. I am still breathing eating talking and going about life as necessary. But I'm no longer exhausted and I have reduced my falls significantly. The nice thing about being a horseback riders you know how to fall properly so I never really hurt myself. So think of it is a new chapter and we just don't know how many chapters each book has.
Hollister

 

[Nuts]

I have to be very careful tho, because it's a little tight trying to get through the bedroom doors.


We put offset hinges on the bedroom door and gained two extra inches without changing the door. Google offset hinges or handicap door hinges.

 

[frankb]

Congrats, Azgirl. on hosting an event that everyone there will remember for the rest of their lives. It is absolutely a blessing to be able to "give" at our point of life rather than "get". Also, congrats on your breathing test results. Perhaps it is that great desert air ? ? Those results are a true blessing.