A couple of questions about how to manage with PLS

[Chris3274]

Hi Eydie: WELCOME! As always, sorry you have this disease. Difficult to cope with at times. From your post it seems we are at the same place with symptoms. I use a rollator, fall often due to ero balance and my speech is garbled. I talk very slowly, which is the exact opposite of my speech pattern pre pls. I sound like someone who has had too many cocktails. I too have had a few choking incidences. You mentioned that you have had pls for 16 years. What was the onset symptom for you? Mine started about 6ish years ago with a very slight drag of my left leg, barely discernible to me and not at all to anyone else. I am wondering if I've had it longer. Before the leg problem I do remember dropping things. But I have never related that to PLS since I've read it mostly starts in the leg. Don't think it moves from hands to leg to hands.

Nikki and all: I am going into surgery in the am. Titanium plate (s) in my wrist. A bit scared but happy to get this done right.
Chris

 

[Green Queen]

Chris all the best with the surgery. Please keep us updated on how it goes.
God bless, Janelle x

 

[LouLou]

Wow...this is very informative thread! I can really relate to all of this too. I was diagnosed in June of 2011. At present I think I'm in a plateau stage. My main concern is my speech. I'm still intelligible but so slow when I talk. I'm finding myself to not participate in conversations as much due to the effort it takes to talk. My overall health is good and since January, my Baclofen pump has only been increased once by 5%. That's the lonest span since getting it two years ago. I'm riding my stationery recumbent bike and stretching 3-4 days a week for an hour. Exercise has been very beneficial to me. I've fallen way too many times in 5 years, and thank goodness have only been bruised. Yes, you have to be focused 100% of the time on what you're doing or in a split second you can be toppling over. I've been going to massage therapy every other week where my legs are massaged for an hour. I think this too has kept me from increasing the pump dosage.

The emotional part has been a bit of a struggle this year and I'm taking Nuedexta for this. But I still have moments of abrupt crying when something sad comes to mind - like thinking of saying goodbye to someone after visiting the - watching Dr. Phil - or sometimes even seeing someone running. The mind/body connection is interesting.

Keeping busy is a big help to me. Even if it's to get a pedicure or walk around a store, just getting out and enjoying my independence now is so important. I can still drive so am very thankful for that.

I really enjoy this forum. I'm also so fortunate to have a support group here in Seattle where there are 5 of us PLSers. We have such a great group.

Blessings to all!

 

[Eydie67]

Hi Chris,

I happen to remember the first incident because it was the day my grandson was born in Georgia 5/5/99. My husband and I were driving from Texas to Ga. and I started experiencing spasm's in my left leg. I thought it was cramps or a Charlie horse I just didn't have a name to put with it. I blew it off I had similar experiences thereafter occasionally when driving or flying.

I did have a struggle with emotions crying easy, My GP prescribed FLUOXETINE 20MG that seems to do the trick. My son passed away one month before I got my diagnosis. I was a mess. He had pneumonia and died suddenly we were so shocked I think that was just too much for me hence the need for the Fluoxetine, it will be two years next month. I know this seems odd but after loosing my son the PLS diagnosis didn't seem all that important to me. It put thing in perspective.

As you described your speech it does seem a lot like mine. I know that feeling of not being able to participate in conversations. I also tire easily trying to keep up with conversations.

Peace,
Eydie

 

[SSesser]

Forgive my ignorance, but I have no idea what a PWC is. I've Googled it but, no matter what other keywords I use, all I get is "personal water craft" or "Price Waterhouse Coopers". I'm really frustrated with my balance problems from PLS. I do daily balance exercises, like walking in a straight line putting one foot in front of the other, or standing on one leg, but no matter how well I perform on the balance exercises, they don't seem to help prevent falls. And the falls fit no pattern, although using a hiking pole as a walking stick seems to help. Once i fell waiting for an elevator, standing still, and last week I fell walking down stairs, even though I was gripping the handrail tightly. I had six stitches for a scalp wound and a CT scan for possible damage to my spine, fortunately negative. Question 1: What is a PWC and if it's a walker, how do I go down stairs for the subway? Question 2: Baclofen sounds so scary. Have any of you experienced anything else that works, such as swimming, massage, acupuncture, tai chi or doing balance exercises? Thanks, Stan (age 72 and formerly a backpacker, hiker, cross country skier and runner, so PLS really gets me down.)

 

[dkcarl62]

Hi Stan, PWC is power wheelchair.
Deb

 

[billbell52]

PWC is a Power Wheelchair. Balance exercises won't help with balance. Balance is complex process. You have fast acting muscles in your legs and feet. They are paired with fast acting nerves from your brain to your legs/feet. You don't know you are doing it but you adjust your balance several times a second. For those with ascending PLS those small fast acting nerves are the first to go so balance exercises do no good. There are around 35 subway stations in NY with handicap access. My wife is from there so I looked it up a few years ago.

Baclofen is not really scary. When my walking started being affected I tried it but it made my legs felt rubbery and actually caused more problems. If it helps you may consider a baclofen pump. It pumps baclofen directly to your legs so you don't have side effects like drowsiness. I was also very active so I feel your frustration.

 

[RollerRacer]

Thanks everyone for writing this post. I have started with either this illness or ALS much younger than the average bear. I am 31 now and started having symptoms 2 years ago.

My latest issues have been with breathing any swallowing. Not exactly a great combination. Apparently I am pretty stubborn and opted to fight through having pneumonia for 7 months.

I've been doing my best to stay active and engaged in the world around me. No matter any of our ages, we are all in the same boat if we stop breathing. The stigma was mental and physical problems is absurd. Our minds and bodies are all interconnected.I have seen many friends and family get physically sick from stress and anxiety. Anyone in these forums has every right to feel the way that we do.

I went on a vacation last week with my wife, best friend and her three boys. We went to an amusement park and other normal teenager activities. It was great to see the pure joy on their faces. It was also an awful feeling to know that I was an outsider looking in. I also have syringomyelia and cannot partake in normal fun activities as I once could.

They went and did indoor skydiving and all I could do was take pictures. Once upon a time, I would have encouraged everyone to go jump out of a real plane.

All these illnesses have kept me from finishing my bachelors degree. I went ahead and registered for a class this semester that I hope is setting me up for success and not frustration and disappointment. As it has been more difficult for me to speak lately, hope business communication works out for me .

One thing that has helped me out on my journey is working on biofeedback. We all know that we need to breath, have good blood pressure, normal temperature, pulse and pulse- oxygen level. Why not practice the same way in which we would if training for a race.

What I do is set benchmark numbers by recording each one of those. Then get in a comfortable position and focus on deep breathing or even just focused breathing. Then I check after about 20 minutes. After practicing for a while, your body will start to do it on its own.


Thank you to everyone that is here and has shared their thoughts and feelings. I put on a smile for all those around me to not get the look of pity. I know we all have a unique struggle with any number of these diseases, but at same time can all relate to the struggles we face daily.

RollerRacer (pwc user)