I noticed as the ataxia was developing in my dad, the symptoms were falling into chairs, falling into bed, inability to navigate in bed (rolling over, moving around), inability to get himself properly cleaned in the bathroom, dressing issues, especially shoes and socks. You may want to keep an eye out for these things happening. The bathroom/shower issue was really big. I didn't know about ataxia at the time, but I knew something was going wrong and that's when I hired CGs to come to his house a few hours a day to help him with all of these activities. Lynn

Oh boy, I didn't realize you were in those stages now. Bet you love having that "hired help", huh?!

Leone, I also have to do everything, even shave Fran as he can no longer do it. Its odd, before his rapid decline the socks were the first clothing item he could not put on.
Fran balked about the handicapped toilet but I bought it anyway. What a help it is for me, once he has his BM it is so much easier cleaning him up afterwards as it sits higher. It can be adjustable to different heights. I just slip my gloved hand between the toliet bowl and his toilet seat. Bernie

One choice can be better than another solely based on the person taking it. So many with LBD seem to react differently to the same drug, so you are at the mercy of hoping that your dr. can try the right one early on, starting on a small dose in case there are negative side effects. There is no one right choice for LBD patients - that's one of the very frustrating things for everyone. It's trial and error for most people from what I have seen. Lynn

Also, I have noticed that pharmacists also can be very knowledgeable about drug interactions and effects. We have an excellent pharmacist in the local hospital and my mother's doctor often discusses meds with him. He has made some great suggestions. Anyway, if you know your local pharmacist, he or she might be another resource.

But I believe Lynn is right--it is so hard to predict because every LBD patient seems to be different! Trial and error is right.

Julianne

How very sad for Dale! Yes, of course Lewy can 'manufacture' pains where no pathology exists but the pain is just as real, nonetheless.

Leone, I am so sorry to read about all the recent changes in Dale.

My mother is now on the lowest dose Fentanyl patch (placed on her back, where she can't pull it off) and two Vicodin three times per day. OTC pain relievers did nothing for her. Even with all that in her system, at times she still complains bitterly of pain in her lower back, hips and knees (not always all locations at once).

I used to worry about all the pain killers and spoke with the doctor and also the DON at the SNF, but both said that if she is perceiving pain, she should be treated for pain, even though I suspect it is not necessarily pain in the ordinary sense of the word. For instance, I notice that she complains of pain more when something else is also upsetting her, for instance.

And she is also extremely weepy, most often in the morning but it could be at any time. I wonder if it is due to her awareness of all her limitations.

Isn't it just so sad to watch these changes?

Hang in there,

Julianne

Leone, Fran also has pain everyday, and I was able to control the pain with Tylenol and Sports Creme. Today was so intense that I called his neuro. The only response I received from the front desk was that they are not a pain clinic. Needless to say I was rude to her after that remark. I tartly told her been there done that with no relief at all.

I explained the situation and after she talks to the doctor, she will call me back. It is now close to 5:30 and I doubt if I hear from them today.

I also think that he is once again declining with his cognition. We both had a really rough day. Bernie

I think a really good pain medication for neurological pain is Neurontin. It can be given at night and it helps with sleep. It also does not appear to make LBD symptoms worse. I would suggest you discuss this medication with your doctor and see if he thinks it might be of help. Smiles, Nan

Frank takes 300mg gabapentin/neurontin, at supper time and goes to bed between 6-6:30 most nights, he doesn't have any pain but I think it helps him get a 12-14 hr sleep. He also takes 10mg of namenda and 5mg of zyprexa, that could also be helping. Whatever it is, I like the 3-4 hrs I have at night and the 2-3hrs I have in the morning. That is my respite.

Yes, forgot to mention, my mother is also on Neurontin. But it wasn't enough. The narcotics are the only things that come close to controlling her pain.

Julianne