Anyone experience festination and freezing at same time?

[LindaP50]

Hubby's walking with much difficulty. Not sure if its the heat or needs higher dose of meds. Neurologist suggested going to 3 tablets of C/L 3x daily. That caused a problem (wrote about this in an earlier post). Went back to 2 tablets of C/L 3x daily. Just a few days ago added another tablet at lunch time.

Also taking HB1 - 1 at breakfast and 2 at lunch. Easing back into this slowly.

Walking is a struggle. Freezes at thresholds then starts to walk on tiptoe and legs appear as though they don't want to move at all. Gait is slightly a shuffle walk, steps are very small with most of the time on tiptoe.

Still using just a cane but he wants an electric wheelchair. We had a talk about if you go to a wheelchair you'll loose any muscle you have left, you still need to stand and pivot, go up and down stairs (unless we build a ramp) and life will be different. I said we need to let the professionals assist us with this decision.

I left a message for doctor on Friday and hope to hear from him today (neurologist). Thought maybe he should get home PT or OT or something. At best maybe they could teach him how to use the walker (we have 2 kinds) cause trying on his own the walker goes way in front of him and his legs are far behind and looks like he'll fall flat on his face.

He's 81 1/2 years old, diagnosed 3 years ago. Started with Lyme Disease (5 years ago) and morphed into PD. No tremors. Talks now in a whisper which I can barely hear. I assist with dressing, he can do it himself but takes a long time. His mind still works very good. Showers on own. Does some cooking but can't stand long, and needs me to bring the items to the counter by the stove. Not safe for him to carry things and walk with a cane. This hot humid weather doesn't help. Heat has always gotten him down so can be a combination of PD and heat fatigue. Yes, stays well hydrated. Eats heartily.

I've been his wife, best friend, advocate, therapist and more - my stomach is getting in knots -

[20fatcats]

Hi.Sorry to hear things are getting harder. What meds is he on. Is it the original sinemet that has been used for years or one of the replacements that has recently come along. Also we found slow release sinemet no good. Is he on slow? We found the new Madapor not as good a sinemet and am back on it now it is in stock again.

[LindaP50 in reply to 20fatcats]

He's on meds for about 3 years now. 25/100 Carbodopa/Levodopa.

Thanks for your reply.

[ddmagee1]

I admire your fortitude, and loyalty, as a caregiver! I’m in my 70’s, with PD, and, do stretching exercises and PD exercises, recommended by my local Parkinson’s Society. This is helpful, because I have times, where walking is very difficult for me. Freezing and shuffling episodes, have caused me to have several falls. I understand only too well, what your hubby is going through. I would think that some form of PT would be helpful, for him to regain some mobility. Good luck to you both! PD is a challenging ailment to live with, day in and day out!

[LindaP50 in reply to ddmagee1]

Thank you for your kind words. I'm still waiting for the neurologist to call back - hopefully with referrals for Physical Therapy and perhaps Voice Therapy. Although I am a little worried about having a home care person come to the home however I will be there to make sure they follow the guidelines for social distancing.

Good to hear from someone who experiences the same difficulties as my husband. Yesterday, he couldn't communicate too well. Words were slurred and softer than a whisper. Today, he got up and said "Hello" clearly and loudly. Told him to yell "Bozo" (because its funny) every half hour - to keep that voice going.

I'll see if hubby will do some stretches with me later. Seems he rather have a partner than doing physical activity on his own.

[Pdlolo]

Try to experiment with your medication. When he wakes up in the morning, he should take his first dose on an empty stomach. Wait half an hour before eating breakfast. Meantime, observe when the medication kicks in and record it. This will be the start of his “On” period ( meaning he can do everything normally, with minimal and manageable symptoms ). When the freezing starts again, record it. This is the start of his “off” period. Take his second dose. Continue this process for the whole day till bedtime. Just remember these basic PD rules to get the maximum benefit from your meds: eat your meals one hour after and two hours before taking your pills and refrain from consuming high-protein foods, especially during the day.

Now, check your records.... and for the next days coming, adjust the timing of your medications to get rid of your “off” periods. Meaning, figure out when to take the next dose before the previous one wears off.

If possible, depending where you live, try to look for and join a Movement Disorder Clinic for Parkinson’s instead of seeing a general neurologist.

[LindaP50 in reply to Pdlolo]

Good suggestions. Will start this tomorrow morning.

The general neurologist wasn't much help and I had to keep calling to get a response from him. Typical with some doctors these days. I'm not sure the Movement Disorder Clinic is included in our health plan, but I'm going to double check. I've been reading a lot yesterday on the Veteran's website for Vets with PD - they may be a good resource as well.

Thanks much.

[LindaP50 in reply to LindaP50]

After 3 days, good results with modifying the time taking PD meds C/L. Instead of taking 3 C/L before breakfast took 1 and waited at least 30 minutes for breakfasts. An hour after breakfast took the other 2 C/L. Did this method throughout the day and the festination with the tiptoeing has stopped. Still pauses/freezes at some thresh holds.

As for his voice, there are good days and there are off days. He doesn't practice a loud voice unless I say Hey yell out Hello, etc.

Whatever works, right!!!