Als confirmed Jan 2014 Tons of Questions

[Patchesgus52]

Hi my name is Patrick
As I stated ALS just confirmed but I kind if new it around 11/13. Started simple muscle twitches in left arm and back no big deal at the time that was early summer 2013. By November I knew something was not right. Als was not on my list. But now that I have it I have questions that I am having trouble getting info.
1 does muscle twitching stop. Mine in most intense in arms and upper body. Legs no so much.
2.my voice is getting thick and speaking slowly. Is that the start of problems.
3. What's is the start of swallowing problems.
Grammar and spelling are not my strong suit and not als related so please overlook.
Take Care
Patrick

 

[Janie H]

So sorry Patrick, one thing I have learned is there is not two people with the same symptoms, I have swallowing issues, speach and breathing issues, faculations everywhere but can still use all of my muscles. My swallowing was the first symptom, I would get strangled on liquids, still do, I can eat and drink if I sit straight and tuck my chin to my chest.

 

[MaxEidswick]

Hi, Patrick – – Ditto to what Janie said. No two people seem to follow the same path from here to there; however we all are headed to the same place:-(.


>As I stated ALS just confirmed ...

That is the conclusion none of us wanted to have; however welcome.


>1 does muscle twitching stop. Mine in most intense in arms and upper body. Legs no so much.

Others here can better address this question. So far, I only have issues with twitching in my left hand, sometimes my biceps, and cramping in hands, and, the worst, cramping in my throat. The doctors have been taking Baclofen which I think this was a cramping.

>2.my voice is getting thick and speaking slowly. Is that the start of problems.

This also was the start of my problems, beginning in August or September 2010. We came up with lots of excuses and none of them was ALS. I think it has really gone downhill in the past six months, but my wife and others allow me say it is not that bad. As I have lost the use of my left arm and hand I have recently taken to dictating my emails and IMs using speech to text and the microphone. It works remarkably well given my slurring.


>3. What's is the start of swallowing problems.

I think my swallowing problems began in the first quarter of 2013. It started becoming noticeably worse by Thanksgiving where I could not participate – fearing death.

Swallowing has become one of the major debilitating factors in my ALS progression, as food and eating are very social activities. I had to give up eating solid food in January/February. Now, if I want to take my wife out to dinner or my colleagues out to lunch, I have to have my smoothies in advance and then choose something at the restaurant like a clear soup to be able to participate. There is a fine balance between being rude, feeling sorry for myself, and still being able to participate.

By the way, if you find yourself at the point where you can no longer chew and swallow, there are many liquefied diets seem to fill the bill. I'm on one gets very between two and 3000 cal a day relatively painlessly .


>Grammar and spelling are not my strong suit and not als related so please overlook.

you should see some of the d doozies goes hand that I write using this speech to text software ...

>Take Care

you do the same Patrick. These can be hard times, but they don't have to always be hard times.

Kind regards,

Max

 

[John1]

Hi Patrick,

I'm sorry you have had to join the forums but I think you will find a warm welcome here and lots of answers and support. I am going to touch on your #2 question, speech. I suspect yours has started to go. In my case it is one of the few areas of progression which is variable. It is actually worse at times and then improves for a spell. Some others have not had this experience. I suggest that you consider banking your voice now for future use in a speech synthesizer for communication. Many, many people have waited too long to record (myself included) and now regret not having their own voice when verbally communicating. You may have a short window of opportunity to do this.

The best program I have heard of is Model Talker which is still in the development stage hence free. You can find out details at modeltalker.com . Perhaps some members who have experience with it can chime in.

I would also mention that for most PALS (person with ALS), the first several months are among the worst emotionally. It is easy to become overwhelmed and depressed. In fact, with time, most PALS continue to enjoy life and adopt a new attitude of living every day to the fullest.

John

 

[Patchesgus52]

Max Thank You. Life is good, you made my day.

 

[Patchesgus52]

Thanks for the insite. I can handle most anything with information on what may happen..thank you, please take care.

 

[Patchesgus52]

Thank you, I mean it.

 

[Patchesgus52]

Janie I learned from you reply. I guess you just have to adapt thanks for the swallowing technique. Take care

 

[AfraidButNotAlone]

My twitching is pretty constant for over a year now. A drink (my choice is gin) usually helps. Not a lot of gin though!

 

[BrianD]

1. The twitching will usually stop once enough nerves have died in that area and muscle has atrophied some. So enjoy them and root them on cause when they stop moving usually you do too.

2. Yes, slower speech is a sign of bulbar symptoms. If you have the time and patience, Modeltalker can generate a synthetic voice for your computer or dedicated AAC device. You record about 1600 words or phrases, upload to the company, and then they create the voice file to download and install. But I would at least recommend talking to your SLP if you have access to one, preferably at an ALS clinic to start looking at your options to communicate down the road. Or if you don't have access the forum can help you out.

3. Usually the first sign of swallowing trouble is with thin liquids. There are various products that you can add to thicken food and beverages without affecting taste. We can provide pointers on that when you need it too.

 

[danrising]

Patrick, as for twitching goes I still have them all over my body just as bad today as I did prior to diagnoses. The only difference is I know why I have twitching. My biggest fear is lost of mobility and unable to transfer. My limbs are getting weaker every day. I am not having any swallowing or speak issues yet, thank God. We all have plenty of challenges ahead of us in the future and have to keep our spirits high. I agree that the first few month are the hardest emotionally, but also all the acts of kindness from friends and strangers are very moving as well.
Good luck and take care.

Danny

 

[zoohouse]

Patrick, sorry you ended up on this team, but you will find out that the people here are the strongest most resilient people you could ever hope to meet. There is such determination to live life to the fullest, and with humour. As far as spelling and grammar, if there wasn't a spell check and grammar check on this computer, you would wonder how I ever made it through school. Sometimes my spelling is so bad that the spell check can't even figure out I am trying to say. My husband is truly brilliant when it comes to english and he is very patient with me, and never makes fun. I have a lot of talents, but spelling, distance running, and skating are not even close to being one of them. Imagine a Canadian that sucks at skating.
Brian is correct about the twitching, as my husbands fasciculations are almost completely gone, but he is basically a quadriplegic. Take care, and come back and play soon.
Paulette

 

[Patchesgus52]

Gin sounds good. Amazing what we do for medical research...

 

[Patchesgus52]

Question. Left arm and hand are about 60 percent gone. Right arm 20 to 30 present weaker. Is excessive of the right arm beneficial.

 

[Patchesgus52]

Will do. Thanks