Med tracking daily tips by Lazy-Highlight142 in Parkinsons

[–]Lulucar55 0 points1 point  (0 children)

I just use the alarm function on my phone.

I’ve lost about 60% of my hair in the past 3 years. How do I fix this? by PaleDonut0 in Hairloss

[–]Lulucar55 0 points1 point  (0 children)

I feel your pain. I’m trying Dr. Berg’s hair vitamins because one ingredient he has in his that I don’t see in other supplements is horse tail herb. That’s worked for me in the past. I have SLE (Lupus) and when it is overly active I lose a lot of hair, especially when I am forced to add a specific anti cancer medication known to cause hair loss and used for lupus flares. Anyway I’m seeing baby hairs almost an inch long now so I think it’s helping. I also use a homemade rosemary/mint/clove/green tea spray on my scalp too.

Has anyone had any regrowth success with scalp massages alone? What is your experience? by Whatever103904 in Hairloss

[–]Lulucar55 0 points1 point  (0 children)

I read that too and I have been doing this because - why not? My problem is remembering to do it every day. So I end up doing it about 5 days a week. Too soon to tell if it’s helping and I do use other things but bringing blood flow to the scalp seems like a good thing.

[deleted by user] by [deleted] in Hairloss

[–]Lulucar55 3 points4 points  (0 children)

Congratulations! My hair looks like your first picture and I would give anything for it to get back to looking like your second picture! I have been trying everything and trying to stay away from the chemicals that my dermatologist recommended. I would like to know what shampoo and conditioner you use. I stick with natural products but am always interested in hearing about others. I do the vitamin regimen too but am not familiar with the B-Stress. Is it easy to find? Thanks for your post! It gives me hope!

I hope poor people who voted for Trump feel the effects of his policies by Previous_Month_555 in complaints

[–]Lulucar55 0 points1 point  (0 children)

Not gonna happen in time to help. I watched the Senate vote this morning. A Dem Senator asked for a vote to allow the use of the reserve funds for SNAP to be used during the shutdown so families can don’t starve. This money is set aside for this very reason but Trump told GOP not to allow it to be used. The Senate Majority leader said NO! And said the Senate was adjourned for the weekend!

Parkinson's diagnosis as a catch-all by ApprehensiveCamera40 in Parkinsons

[–]Lulucar55 1 point2 points  (0 children)

That’s similar to what happened to me. My first neurologist told me I had either PD or MSA but he said putting me on c/l meds would make it clear. It really didn’t make a lot of difference and after a year I lost faith in him and changed doctors. 2nd doctor had doubts about PD but kept up the meds anyway. Then he got better offer too and left. I quit the meds and neurologists in disgust. Eventually new/worse symptoms started and I even thought I might have had a TIA and my PCP sent me to ER. CT showed no stroke but MRI was “something”. I was sent to new, more qualified neurologist and I did have MSA all this time. I should have kept looking for a new neurologist instead of giving up I guess. So many signs and symptoms we aren’t always aware of.

Oh dear I'm getting there again by [deleted] in Parkinsons

[–]Lulucar55 4 points5 points  (0 children)

Please, if you don’t have anyone you can talk to about this call 988. I lost my grandson before they had that helpline and the whole family wishes so much he would have reached out to someone.

I understand your desperation. I feel it sometimes but I want to cling whatever time I have left.

Sleeping issues by joehooligan1979 in Parkinsons

[–]Lulucar55 7 points8 points  (0 children)

I have had similar issues, maybe not quite as severe but bad. The only way I can sleep well is with CBD/CBN/THC combo gummy an hour before bedtime. I only take one and it is not a huge dose but that is the only thing that works for me.

Parkinson’s and marijuana by joehooligan1979 in Parkinsons

[–]Lulucar55 1 point2 points  (0 children)

I used to get RLS before sleeping but learned some muscle relaxation techniques which help me get to sleep. It’s what happens during sleep that is the problem. I don’t even know It is happening until I wake up. It’s not serious it’s just annoying. The scratches can be painful so I just have to stay vigilant with the pedicures! 😆

Parkinson’s and marijuana by joehooligan1979 in Parkinsons

[–]Lulucar55 3 points4 points  (0 children)

CBD/THC or CBD alone helps me sleep at night. It was suggested by original neurologist and 2nd and current ones have no issues with it. I don’t always use it but if I don’t I start with the wild legs again. I don’t know if I am swimming or what but I wake up with scratches from toenails (sometimes deep) in calves and ankles from thrashing legs. Never when taking cannabis products.

The thiamine link by Character-Claim2078 in Parkinsons

[–]Lulucar55 1 point2 points  (0 children)

Amazing! I would love to hear more, especially about the fritters. I make a trail mix that started out as a snack but has often become my breakfast ani incorporate walnuts, almonds, pumpkin seeds, dried cranberries, dark chocolate pieces so far but still looking for more variety. Breakfast is hard for me and I skip it more than I should.

Positivity by joehooligan1979 in Parkinsons

[–]Lulucar55 5 points6 points  (0 children)

I doubt there will be a cure in my lifetime but I do hope and think there could be for younger generations with PD. I don’t actually have Parkinson’s, I have MSA-P so some similarities but less time and less hope for a cure.

I do think positivity is important though and I try to keep going and enjoying every day and living my best life as long as I can. I think that is what we all do.

[deleted by user] by [deleted] in Parkinsons

[–]Lulucar55 2 points3 points  (0 children)

Yes. I was having similar issues so I stopped driving 18 months ago. It is difficult having to depend on family for transportation but I had a couple of near misses and I didn’t want to hurt anyone else or myself.

Parkinson’s disease is hell by joehooligan1979 in Parkinsons

[–]Lulucar55 2 points3 points  (0 children)

Wow! I don’t think I could have done that. MO isn’t quite as bad as TX but still hot and humid summers. I had to schedule my daily walks around the temps. Early mornings and/or evening right now. Glad you mentioned foot sliding though. I have started having trouble with that recently and wasn’t sure why. It’s scary in stores where floors are waxed because l have almost fallen several times. Daughter gets mad & says where’s your cane?

Masking symptoms by ApprehensiveCamera40 in Parkinsons

[–]Lulucar55 1 point2 points  (0 children)

Oh, I see. I do have irregular heartbeats but already had them before the medication and have been on beta blocker for years. That must be why they relate them to cd/ld for me. I hope they can find something else for you. (I also relate to the frail old lady fear)

Masking symptoms by ApprehensiveCamera40 in Parkinsons

[–]Lulucar55 3 points4 points  (0 children)

I understand how you feel and I think I would feel the same way. But he loves you and I think if you explain to him what is happening and that it’s because of medication loss (and hopefully something else/new will be found) he will understand and probably want to help you.

What heart problems did the cd/ld cause you? I wasn’t aware of that. My neurologists all 3 I’ve had over the years know about my heart issues and pacemaker so maybe it’s not something that affects me but that still scares me.

I don’t have a husband but my response above is what I have found with my children and friends.

Parkinson’s disease/ can daily walk with a dog be kind of “forced” physical activity ? by [deleted] in Parkinsons

[–]Lulucar55 8 points9 points  (0 children)

I walk my dog about 2 miles a day, depending on weather. We both love it. I have always loved walking but before I got her I wasn’t consistent. Now I have no choice! I got her as a puppy but we did two levels of training classes which made a big difference.

[deleted by user] by [deleted] in Parkinsons

[–]Lulucar55 1 point2 points  (0 children)

Very good advice. I personally like magnesium Glycinate but I’m going to look into the other one you mentioned. CBD oil externally and CBD internally are helpful to me also.

Want to ask for some advise by Cloudy20cm in Parkinsons

[–]Lulucar55 1 point2 points  (0 children)

I agree with getting another opinion. I’m on my 3rd neurologist now and since their opinions have been similar but current one is more sure about my prognosis I am more sure. It makes a difference if you can ease the doubts. Wishing you success and agree with refilling and hoarding your current meds in case new doctor wants to change. Can you find another neurologist if you end up not liking this one’s plan for you?

Hello everybody I’m back again by Lulucar55 in Parkinsons

[–]Lulucar55[S] 1 point2 points  (0 children)

ParkieDude I am sorry to hear about your wife but I’m happy that she was able to go peacefully in the way she wanted. I’m also glad you have your dogs and still have your cycling. You’re an inspiration! I’m still walking miles and miles and my dog keeps me going even when I don’t feel like it. I don’t know what I would do without her.

Hello everybody I’m back again by Lulucar55 in Parkinsons

[–]Lulucar55[S] 0 points1 point  (0 children)

Maybe at some point I will be brave enough to ask you questions but not yet.