My answers on questions about hand controls and CMT and pneumonia

Hi Everyone: I guess by now you can tell that I’m not a big time blogger. It simply takes too much energy and usually half a day for me to do an entry. However, some CMT people have been asking me questions and, rather than answer them individually, I have asked each one permission to print their question on my CMT and Me blog so everyone can read my answer. I have four questions on my plate right now and I’ll try to answer two this week.
I’ll only answer questions I have either personal knowledge of or have written about. There are tons of things related to CMT that I haven’t a clue about. And if you want to help out with some useful information to add to my answers, please do.

Hand controls
Q: I have a friend who has CMT. She is looking to get hand controls for her car in the United States. Could you please let me know where can she find information on hand controls for driving. We will be very thankful to you.

My answer: I have used Sure Grip push/pull hand controls for 30 plus years and love them. I’m told, by my mechanic, that they are not that expensive and quite easy to install (under $1,000 total). Mine have lasted for years and I transfer them from van to van as we buy new ones (every 8 to 12 years). Every time I get my automatic ramp checked out, I have my hand controls checked as well. Little adjustments can mean a lot when it comes to fatigue. I also use a quad grip on the steering wheel as my hands are too weak to grip the wheel. There are a variety of hand controls and spinner type devices available and she’ll have to decide what’s best for her. A tip is to ask the dealer if they have someone who already uses the hand controls she thinks will work for her and go for a demonstration and test drive. We’ve shown our van to several people thinking of buying both a kneeling van and hand controls. Go to http://www.suregrip-hvl.com for the dealer nearest you.

CMT and pneumonia
Q: My name is Pauline (71 years old ) and I was diagnosed with CMT in my mid forties .
I am constantly frustrated by the lack of assistance I get from my doctor whenever I have a question regarding my condition .
Obviously he can’t know everything about every disease so I’m continually having to research information myself .
Over the years I’ve overcome (with help i.e.. calipers (braces) etc.) each situation as the disease progresses but I can’t find out if CMT is the cause of my getting pneumonia almost every time I get a common cold?
It seems to take me a long time to recover and I suspect that I have ‘walking’ pneumonia this time .
My doctor is always reluctant to prescribe antibiotics and I understand why. He also doesn’t like my suggesting it may become worse due to my CMT .
I don’t think he is very happy that I research it myself as he ignores and disregards any information I try to show him.
In all other matters he is a good doctor so I’m loath to change to another.
Is this a common problem?
I was very interested to read your site , you answered a lot of questions for me .
Basically I just want to know about the cold becoming pneumonia, possibly being related to CMT ?
I look forward to hearing from you .

My answer: Hi Pauline: Most of us do a lot of our own research. Most doctors see one, maybe two, people with CMT in their entire practicing life. If you’re lucky you’ll get one who listens to you as you are the one living with the disease and you have the most to gain if you receive appropriate care.
I also am 71 and used to get pneumonia pretty well every time I caught a cold. The cold lasted about ten days but for weeks I felt as if I’d been pulled through the wringer.
Finally, after X-rays or an ultrasound, I can’t remember which, it was discovered that I had, and have had likely many times, lower lobe pneumonia.
The lobes of the lungs go way down into you lower back and it was infection down there that was doing me in. Antibiotics helped clear it up. Tip: Always take acidophilus before, if possible, and with an antibiotic. The drug strips all the good (and bad) bacteria from you intestines and you could end up with diarrhea while on it. The acidophilus replaces the bacteria and keeps your gut in good working order. You can get acidophilus at your health food store.
I finally found an antibiotic that didn’t give me hives or worse. It’s clarithromycin also known as Biaxin in Canada. I use the time release type. My pulmonologist gives me a standing prescription for it and when I know I either have bronchitis or feel that I have pneumonia (my sputum tastes different when I have pneumonia and I usually get checked out because I can’t hear the rattles way down in the lower lobes.) I fill the prescription. I use it maybe once a year but actually went on a four year period of wellness two years ago.
Several years ago, my GP was doing a routine chest tap and told me my lungs didn’t sound right, especially the left one. He scared the daylights out of me. My imagination is a vivid animal…I immediately had lung cancer. An ultrasound was suggested. It turns out that I have a pocket of fluid in the bottom of my left lung that’s just always there. It is not infection and it is there because my diaphragm is too weak to let me cough deeply and I don’t move around enough to get rid of it. To my great relief, my pulmonologist said, “Don’t worry about it, you’ve had it for years and I know all about it. You’re fine.”
I also get bronchitis almost every time I get a cold and it’s not fun. My bronchial tubes get so congested I can barely breathe. Sitting up all night struggling for breath isn’t my idea of living. I cough and cough and eventually, after maybe three days, begin to bring phlegm up, but I still can’t breathe well and am utterly exhausted.
My pulmonologist suggested I have my own nebulizer, which is a nifty little machine that makes liquid into tiny droplets that I inhale. The medication that goes in it is Salbutamol respirator solution and I use it when I can’t breathe well. After inhaling, until the nebulizer reservoir is empty, I can breathe well enough to sleep and with sleep I get well so much faster. It also relieves my tight chest during the day. I never abuse it and always try to go off it as soon as possible but it truly is a lifesaver. He also suggested I lie upside down off my bed to shift the fluid in my lungs and help bring it up. Crazy but it helps.

Before the nebulizer came into my life, I’d have to wait eight sometimes 12 hours in the ER for the same treatment and only have it once. When you can’t breathe without a huge struggle it is frightening and panic only makes it worse. Knowing you can do something about it makes a huge difference. Now, I can treat myself as needed and that relieves a great deal of the fear and helplessness you feel when you can’t control your own destiny. My doctor gets that.

Our ability to cough can also be lost if we cough too much. I’ve coughed so hard and so long for so many days (and nights) that eventually, I simply couldn’t cough anymore. My cough reflex was gone. This isn’t good because the only way you’re going to get that gunk up is to cough it up unless you have to go to suctioning which, I’m told, really isn’t fun except it does give relief.

The antibiotic and Salbutamol mist help your body get rid of the infection and mucous and you eventually have clear lungs.

In my humble opinion and as a CMT person who has had pneumonia maybe 12 times and bronchitis more often, a weak diaphragm, weak chest muscles, inability to move around vigorously and CMT affected nerves can all lead to pneumonia and bronchitis following a cold.
Ask your GP to refer you to a pulmonologist.

From the WWW: A pulmonologist, or pulmonary disease specialist, is a physician who possesses specialized knowledge and skill in the diagnosis and treatment of pulmonary (lung) conditions and diseases.

Pulmonology is classified as an internal medicine subspecialty. Because of the variety of clinical problems encountered, knowledge of internal medicine and other specialties is required in order to obtain certification.
These are my opinions based on my experiences. Your doctor should be your final stop but no harm in making suggestions. You are your own best advocate.
If you’d like to add to anything I’ve said here, please do through lindcrabtree.wordpress.com. Questions maybe addressed to me at linda@lindacrabtree.com

9 Responses

  1. Thank you for the information Linda , you have been a tremendous help . I will print it out and take it to my doctor and ask him to refer me to a Pulmonologist as you’ve suggested.
    Best wishes
    Pauline Catchpole

  2. Make certain you spread out the acidophilous (sp?) hours apart from the antibiotic or else you will render the antibiotic ineffective. I suggest actually starting the acidophilous after you end the antibiotic to restore balance to your GI tract. However, if the antibiotic does give diarrhea, you can take the acidophilous, but several hours after taking the antibiotic. Also, a cough assist machine, used both during colds and routinely can help your maintain your maximum lung function longer, allowing you to better clear phlegm when you do get sick.

  3. Thank you Linda, I do not have this problem, thank goodness. But I have followed your words and your column for many years now. this is Joanie, formally from the Mojave Desert in California. In 2004 I moved to NC to be near my son. He has been ill a lot of the time. Now I am 82,, and can no longer drive. Have a rollator in the house when I have my AFOs on, and a power chair when they are off. Various problems have come about due to the CMT,but at least I don’t have the various breathing breathing problems you are talking about here.
    Joanie

  4. Hi my name is Teresa Gentle, I’m 50 years old and was diagnosed with cmt at the age of 35. I just wanted to say I enjoy reading this blog and learning from all of you with the questions and comments. thank-you

  5. Hi Linda, Bettye VanderVeen here. I have followed you since your early days with CMT. After seeing you driving with hand controls, I decided to investigate hand controls. I realized I was getting to the point where my feet were not working as they should be. I did not want to be one of the little old ladies that drove through the side of a building when I put my foot on the gas, thinking it was the break. I also wanted to remain independent as long as I could. The hand controls have been a godsend for me! There are many helpful handicap possibilities out there. I started by going to the business that installs hand controls. The best thing to do is fine a Driving School and Driver Rehabilitation and take some lessons from a driver Rehab Specialist. You will take a written test and then you will learn to drive with the hand controls. At first, it will seem strange, but hang in there and work at it — the best thing for you. Soon it will start to feel good and you will have and independence you will be so happy to have gained. I live in Virginia and there are some helpful grants for the Aged and Handicapped on the Internet (I believe Virginia.gov). I received $100. The school was about $300. Some may have a discount and you can use your grant toward the lessons. I took about 5 or 6 driving lessons. Had an excellent instructor! After you have completed your sessions, you will need to take a new drivers road test with your hand controls installed. Study hard from your state’s drivers manual. Most automobile dealers now have a brochure for the handicap. I bought a new Honda Accord and I went to American Honda on line and filled out a form and applied for assistance. They would evaluate you situation and give you as much as $1.000. toward your request. The hand controls cost about $2,000. There is an initial investment, but if you can some how work it out, it will probably be the most important thing you can do to keep you independence! I am doing pretty well. Have had two hip replacements and just had my second full knee replacement. I was a little concerned about having the knees done because of my CMT. My knees are fine, but I do have the two big toes that drop and could cause me to fall. I do not like walking with a cane because it is much easier to fall. I have discovered this 3 wheeler Winnie Walker by Drive on the Internet, even has racing stripes! It is very light (about 9 pounds), inexpensive and collapses like an umbrella stroller. Many people have asked me about it. I can put it in my trunk and walk around holding to the side of the car. I use it all the time and my insurance company accepted it since I need it to get around and still be able to walk! This is a hard disease for many of us, especially if we have been very active in the past, but it could be worse. I have many friends experiencing eye problems and cancer of many descriptions. Try not to be depressed – take it own. You will be please with yourself, if you do. Linda, I have always been amazed with how you have handled your CMT. You have been an inspiration to me! Thank you. Sincerely, Bettye VanderVeen

  6. OMG, I thought I’d never be able to drive again but this gives me hope. I miss my independency. Thank u for sharing ❤

  7. Hi to all, have you tried Guidosimplex hand controls.

    • Hi Mark and thanks – Guido Simplex hand controls look really good for those of us who have functioning hands. Some don’t. I’m just lucky to be able to use a quad grip. But, if your hands are still strong and you’d like to drive a car with a manual gear shift, this might be just the thing for you. Google Guido Simplex and you’ll find an excellent video explaining how it works.

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