Why Keep Your Neurologist?

Ataxia is a condition without a cure and without a definitive treatment plan. Going to (yet another) doctor for (yet another) hopeless visit can be physically and financially challenging and emotionally draining. So why would you want to keep your Neurologist if they can’t cure you?

There are a few reasons.

A good Neurologist may be able to develop treatment plans that can address one or more of your symptoms.

They can write prescriptions for treatment programs or assistive devices in a way that makes sense to insurance companies, which may then pay for (a portion or all of) your treatments or devices.

They can establish a base line of your condition, and evaluate how you are progressing over time.

They can refer you to practitioners of other modalities such as physical therapists, occupational therapists, speech therapists, and exercise programs, all of which are designed to keep you safe.

They can refer you to researchers and research studies to participate in new treatment modalities.

They can suggest support groups, conferences or symposia in your area.

They can provide more and more accurate information about your particular Ataxia.

They can suggest care and treatment you might not otherwise know about till after they might have been able to help you.

No, your Neurologist will not be able to cure your Ataxia.

But they can help treat the symptoms, define a care plan that works just for you, and keep abreast of the current thinking on this condition. Yes, going to one more (usually more expensive) doctor can be one more thing to schedule, to manage, and to pay for. But if you decide to stop your visits to your Neurologist, you lose an important coach/guide/helper on your journey with Ataxia.

Disposing of Medicines (Safely)

Your journey with Ataxia will likely come with a lot of different medicines that are prescribed to you along the way. In variably one or more of these medications will not work, will no longer work, will need a different quantity, size or compound, and you will be left literally holding a fistful of frustration.

Back in the bad old days, we would just toss the bottle of meds in our wastebasket or the loo and wander on about our day, sure that we had done all that needed to be done. Maybe we’d scratch off the recipient’s name on the bottle or tube, but usually we’d just toss it. Or perhaps we’d drop the medicines into the toilet and flush them, again thinking we’d done our civic duty in disposing of our meds.

However, times they have changed and that means that the way we dispose of our medicines safely has changed, too. You can no longer safely dispose of your medicine bottles into the waste basket or flush your medicines down the toilet or the sink. Here’s why:

Whether you are a lucky rural dweller with well water or an urban dweller with treated city water, you run the risk of contaminating the very water you drink if you choose to flush or wash your medicines down the toilet or sink. Many medicines do not break down in the treatment process and they proceed to revisit you in that sparkling glass of water you just drew from your tap. Even if you have a well, disposing of your old medicines through your toilet or sink simply flushes those nonbiodegradeable medicines into your septic tank….where they hang out cozily till they decide to leach into your well. Yum!

And what about liquids, lotions, and creams? Those, too, should not simply be discarded in their tube or jar. Even if the container is supposedly air-tight, the odds are good that the container may break, shatter, puncture or otherwise release the contents…which then make their way into the water table and contaminate the water around the disposal site.

Even if you aren’t worried about your health, your discarded medicines dumped into the environment have an impact on the flora and fauna around the disposal site. In general, pharmacology companies are not required to study the impact of their medicines when improperly discarded into the environment. They have no idea exactly what their sleeping pill, pain pill, antidepressant, etc is doing in the environment. That means: neither do you.

Disposing of your old, discontinued, expired, or extraneous medicines is easy to do, particularly in the Lansing area.

First, prepare your medicines for disposal: For pills and tablets, remove all labels and markings from the container. If you need to scratch out your name, Sharpy pens are very good for this purpose. Just make sure you completely deface your name and any identifying information such as your address, the medication name, and the prescription number. Then, shake the contents of the pill container into a plain zip lock baggie. You can put as many kinds in there as you want, including the pill/s you accidentally dropped on the floor (yuck!), the expired aspirin or supplements, and so on. No one else is ever going to use these pills, so don’t worry about keeping them separate.

Once you have removed the contents of the containers and eradicated any identifying information on the container, you can pop the lid back on and toss the container into recycling or the trash. But! there’s residue on the inside of the container! Yes, there is. However! there’s not enough medicine in the dust that falls off the pills to worry too much about. And as an Ataxia person you likely have bigger fish to fry.

Now you have a little (or big) baggie of various colored pills and tablets. All you need to do now is carry the baggie to your local law enforcement office and wave it at them. They will stand up, tell you to poke it through the reception speaker hole, and carry it away and drop it into something that looks like a locked Sharp’s container. The contents of that container is dropped into an incinerator and the old meds are burned up, leaving nothing but inert ash. This is much better than dumping them into your water supply!

Some people may worry about being questioned or hassled when they try to shove a bunch of pills at a cop, but honestly in all my time of disposing of old meds, no one has ever even asked my name. I personally use the local sheriff’s office during usual business hours. Use some care to make sure you are safe while you are dropping your baggie off. In other words, if you happen to live in a rough neighborhood, don’t advertise your ‘wares’, put your pill baggie in a small paper bag and let the officer open and dispose of it. Just tell them you are dropping off old medicines.

You can also return your tablets or pills to the Walgreen’s Pharmacy on Jolly Road in Lansing. The pharmacy there is open 24 hours and you can drop in and drop them off. I prefer to use our local sheriff’s office to dispose of pills because, well, “police!”

Now, about creams, lotions and liquids. The police will NOT accept these forms of medication. Sparrow Hospital Pharmacy used to accept pills/tablet/liquid/lotion/cream and paste medicines, but no longer do. That leaves the MSU Pharmacy, located at 804 Service Road and the 24-hour Walgreen’s Pharmacy at Jolly Road. If you are an Ataxia patient seeing any of the many fine neurologists at MSU Neurology, then you already know where the MSU Pharmacy address is located. The Pharmacy is at the front of the building and if you are using an assistive device you may want to get a friend or caregiver to drop off for you.

Liquid/lotion/cream/paste medicines should be kept in their original packaging with the patient’s name, the prescribing doctor, prescription number, and so on still intact. MSU Pharmacy will NOT accept medications unless all this information is still there. You can also turn your old tablets in to them, but you need to make sure all the information is intact on the bottle. Personally, I find popping into the cop shop a bit simpler than trotting over to the MSU campus and dealing with parking and so on.

At this time, MSU Pharmacy and the Jolly Road Walgreen’s are the only organizations in the local Lansing area (that I currently know of) that accept liquid/lotion/cream or paste medicines for disposal.

So there you have it. If you want to safely dispose of medications for whatever reason, this is how. Please do not throw your medicines away in your trash or flush them. It’s an avoidable environmental hazard that could come back to revisit you in unforeseen ways.

Please note that the locations mentioned here are Lansing-area specific. Your mileage may vary in other locations and states. Just call your local police station and ask. Do NOT dial 911 as this is not an emergency; please call their land line.

And by the way, you can dispose of pain killers of any stripe (aspirin, tylenol, oxy, whatever) in this manner. The recipients in this case do not care what is in your pill disposal baggie or bottle!

My Tale of Ataxia

I volunteered to be the local Lansing area National Ataxia Foundation representative not because I have all this copious spare time nor because I am a selfless individual, but because my family has a rare form of hereditary Ataxia that I have been forced to learn rather a lot about because of our personal circumstances in dealing with this kind of Ataxia.

My dad and Aunt both have Ataxia. It developed about the same time, but the progression has not been the same. Dad is a little older than my Aunt, and his Ataxia is much worse.  She’s still fairly mobile; he is less so and experiencing the full gamut of symptoms.

Ataxia is a condition without a cure and with no clear treatment plans. There is no magic pharmacological bullet; there’s no ‘top secret’ research in process that will provide my relatives with a cure that will return them to their former level of health.

As those who know me best will attest, I am driven, focused and determined. After living through 9-11 in New York City as a New Yorker, I would have said pretty much nothing in this world scares me anymore. That would have included Ataxia – which still doesn’t scare me – but I have a healthy respect for the chaos the condition can create:

I had my personal ‘dark night of the soul’ one frigid morning at 3 am when my Dad fell and (re)broke the same hip he had just had replaced 3 weeks earlier as a result of his Ataxia worsening. My Mom was still alive, with end-stage vascular dementia, and I could locate no one awake to come sit with her while I went to the hospital with Dad. I sat in the dark and howled for 3 minutes – all the time I could spare at the time – and had my very personal pity party of one. I was terrified. But I had to get it together and get Mom and I both over to the ER, where we sat for a couple of hours till they found a room for Dad and we could get him settled in. By 7 am, we were home and then the fun really started.

This experience really highlighted to me how unprepared we were for any sort of real emergency, and I was determined at that moment to be prepared for the future. “That which doesn’t kill you”, and all that rot. 

Over the past year in particular as our care needs have changed, I have taken a deep dive into the best practices of case management, caregiving, medical treatment, and yes, even research.  None of this has scared me, even though some of the experiences have been quite ‘exciting.’ Sometimes this makes me very sad, and sometimes this makes me mad. But none of this is scary.  If you are reading this, and you are scared, hopefully we can help make the medical stuff and life changes all a little less scary and yes, more accessible.

So I have been there, done that, and am living the dream (hah!)  Much of this web site is based on what we have found helpful, not so helpful, and in my case, interesting. I try to attend any local conferences or symposiums that may be useful in my quest for care for my relatives.  Luckily, living in the capitol city of the great state of Michigan, where we have access to both Michigan State University locally, and the University of Michigan an hour away, excellent medical centers, and some amazing care and support organizations make this task easier than it might be.

I would like to note that people in other states who are reading this, or even people in our Upper Peninsula, may find the specifics of care in the Tri-County Capitol area of Michigan not terribly useful for their own situations. One of the things I have learned in talking to others in different states and cities is how lucky my family is to be in this area. We have a lot of services available; others are not so fortunate.  Also, the Michigan state government has done a remarkable job of making information available to care-giving families and funding organizations that can help us help ourselves.

My goal with this web site and the Lansing Area National Ataxia Foundation Support Group is to helping others avoid their personal 3 am Dark Night of the Soul, and get the best possible outcome for their Ataxia or their person with Ataxia. That is why I am here and how I hope to help.

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