I wonder if I could get your opinions on my symptoms. I was diagnosed with idiopathic PD just over 2 years ago and my decline has been rather more rapid than I might reasonably have expected. I have many of the classic PD symptoms from resting tremor in my right arm, to bradykinesia, very awkward gait in which I stoop forward and seem to have knees permanently bent slightly when walking which puts a lot of strain on leg and back muscles. Lots of troublesome backache, excessive saliva giving rise to drooling on my pillow during the night. Lack of flexibility, reduced manual dexterity etc, etc.
But the thing I perhaps struggle with the most is lack of strength. I literally seem to be as weak as a kitten and get completely knackered at the slightest exertion. I just don't know where this extreme weakness has come from but its very debilitating and does make me want to question, once again, whether this is normal for PD or whether it's more typical of MSA - because it does feel like my muscles are atrophying before my eyes! I joined a pilates class a year ago and still do it weekly although now, I'm unable to do about half the exercises. Getting up from a face-down position on the floor into a kneeling position, for example, I find almost impossible without help. And getting up off the sofa to a standing position is also really troublesome. I try to do exercises daily and my medication is 187.5 mg Sinemet 4 x per day.
Also, in the last 6 months my speech has become strongly affected and my voice is quieter and higher pitched than it used to be and I more often than not have a lot of trouble getting my words out. Normal conversation has become very difficult.
Is this extreme weakness and speech difficulty to be expected or do you think I could be a candidate for MSA or some other "PD+" variant?
Many thanks
Paul
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PWal
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RoyProp will never steer you wrong. Please start the b1 Thiamine hcl as soon as you can. Definitely join the Facebook group he referenced. Many HU members are members of the Parkinson’s Thiamine hcl group also. Good luck PWal.
Many thanks. My neurologist told me he’s a movement disorder specialist but I on,y get to see him every 6 months and due to corona virus my April appointment with him was postponed until September.
PWal, I sympathize with you and understand your predicament. Can you at least get him on the phone or meet him via video call? Are these options where you live?
I don't know how you can pull through without a lot of misery until September without help. The situation that you describe, qualifies as an emergency.
Yes it’s difficult at the moment. I did email my neurologist a few weeks ago to try get some questions answered but never got a reply. He seems to have disappeared!
Hi, PWal. Sorry to learn about your challenges. I agree 100% with pdpatient. This is a wonderful site with many caring people, but you need to see a Movement Disorders Specialist. I was also diagnosed two years ago so we are brothers facing this together. You will be in my thoughts and prayers. Best wishes always!
Many thanks. My neurologist told me he’s a movement disorder specialist but I only get to see him every 6 months and due to corona virus my April appointment with him was postponed until September.
I too am having very similar but very debilitating symptoms but have never, over the past 9 years that I've been struggling, had any of the typical motor symptoms of PD. Non-motor symptoms, yes, lots of them. But over the past two years I've really been struggling with musculoskeletal pain and full body weakness resulting in the same physical symptoms you have so I know exactly how you're feeling.
And for a long time I've been wondering if I have P D or not. I've been told by numerous neurologists that I don't and datscans have been negative. But here's the problem for me. I have a twin brother who has PD, without a doubt, and he has exactly the same issues regarding pain and musculoskeletal problems. His datscans were negative too when he was first diagnosed 11 years ago. His first symptom was left sided tremor and he responded well to PD meds. After 11 years he's suffering a lot, especially physically.
The more I investigate the possibility of rhumatalogical causes of my symptoms the more I am realising that I seem to have problems with some of the many varieties of arthritis. Which type I have yet to find out. My bones, joinst, tendons, ligaments, muscles all hurt like hell and the result of all this leaves me not only in pain but absolutely exhausted and, as you said, weak as a kitten. I have huge problems with manual dexterity too with my fingers, arms legs, shoulders, back
and neck. Huge balance issues plus a host of other problems. Drooling, yes, slurred speech, yes, rigidity yes, even breathing without thinking I'm about to break my back or crack open a couple of ribs. My rhumatalogist tells me my muscles are atrophying too.
Before you say you don't think you have any problems with arthritis or musculoskeletal issues, neither did I until about 2 years ago when pain and difficulty moving any and all parts of my body
normally began to take over as THE major and most difficult symptoms. I began to have MRI's and scans and in particular a scintigraphy. I found that I have arthritis and/or inflammation in almost all of my joints, large and small. My neck vertebrae are arthritic too which can cause all sorts of problems lower down. And I mean all sorts of problems!
So, do I have PD or not? I have cognitive problems and vision problems which were the first worrying symptoms for me. I saw a rheumatologist in Geneva who said they're being caused by arthritic neck
vertebrae. Same issues with my shoulders. Arthritis and tendon and ligaments all causing me problems with pain and weakness and dexterity. How many times have you read that PWP have neck and shoulder problems? Pretty much all do. My brother does big time.
I really do feel part of my problems is PD. I know how it feels not to be able to move properly or think clearly and feeling like I'm sure my brain needs some dopamine NOW to get me out of this. I can see the same with my brother when he's having his "off times". But the neuros I've seen say I don't have PD because I can pass all their tests in office visits. So can my brother by the way! Outside their office it's another matter.
What I'm saying is that I'm as confused as you are. But don't rule out non-Parkinson's musculoskeletal causes that are in their early stages. Some forms of arthritis (there are many types) can take years to be diagnosed as being the cause of many of the symptoms you and I have.
A good rhumatalogist who will do a full work up on you including radiological including such things as bone density testing and blood testing is definitely worth finding. If only to eliminate musculoskeletal problems.
And, as others have said, a movement disorder specialist who would also be able to take into account rhumatalogical problems.
Do you or I have PD in any of its forms for certain? Do we have a variety of PD and something else at the same time? It's possible of course. All I do know for certain is that it is hard to live like this without knowing why.
I hope I may have given you another rabbit hole to go down which may help you to get closer to a diagnosis.
Many thanks frankaspergilus for your very comprehensive reply. I’m sorry to hear that you have so many problems of your own. We sound a right pair, don’t we? What you say is very interesting and food for thought. Many thanks and best wishes to you👍😊
I've tried 23 and me but for some reason they won't test people who live in France which I do. My brother lives in the UK so I asked them if I could send samples via him but was told it was against their terms of service. The kit they send out has to be used and sent back from the country it was sent to. Why not France I have no idea.
I am going to ask my neuro if he can arrange to do DNA testing here as I know some of them do. But as they always rule out PD based on my clinical symptoms in their office, I don't hold out a lot of hope.
Your other suggestion earlier on about B12 I think I have covered. I supplement with B12 and Vit D and have done for a long time.
At the moment I haven't found a solution for my neck problem apart from paying as much attention as I can to how I position and move my head, and even my upper torso throughout the day. Sometimes it feels normal with no stiffness or pain, sometimes I can't move it an inch in any direction because it's so stiff and painful. I can't decide if any of that is PD or not. I'll guarantee some PWP will say it is.
So far, I can't get any of the neuros or rhumatalogists to agree on how bad my neck is or what symptoms it may be causing.
I've found that if I sleep wrong on my neck it makes things much worse when I wake up. Even cognitively. More than a few times I've woken up feeling as if I've had a stroke or something. Totally muzzy head, slurring my words, dizzy and can't walk in a straight line. And a real headache which I think is what is termed as a cervical headache. This can go on for a few hours before it clears up. And it always seems to happen following a bad night's sleep thanks to my neck.
So, I sleep with a very thin pillow that allows me to sleep almost flat when I'm on my back and I try to fold the pillow to double its thickness if I turn onto my side. It's still only about 4 inches thick. This way I hope to keep my neck in line with my spine. If I use normal pillows and my neck is bent or stretched out of line for any length of time, I know I'll suffer a lot when I get up.
Shoulder and neck massage for me makes things worse. It wipes me out and it's the same with acupuncture.
Unfortunately, I don't have much choice in painkillers. Ibuprofen and such are no good for my digestive system and I'm allergic to opiates such as codeine. I try to get by with mild painkillers and turmeric. But, as I have diffuse pain in most of my body, the effects aren't great.
A lady I know, only in her forties, was having real problems with her arms and upper body (dizziness, poor coordination, weakness, numbness). She thought PD was a possibility. She was cleaning her teeth in the bathroom one day when, in an instant, she found herself on her back on the floor across the room with no idea how she got there. I've had similar experiences. They found she had a problem at the base of her skull/top of her neck. She had an operation and is now fine. I don't know exactly what the problem was. The guy who diagnosed and fixed the problem was a neuro who specialises in peripheral neuropathy. I've been trying to get an appointment with one who does the same thing in my area but Covid has but that on hold.
Apart from that I try to stretch a lot. Anything, anywhere, anytime. Trying to prevent things from getting worse really. That includes my neck but I know I have to be careful with that.
Hi Frank, it looks like you have most of my symptoms and I hope what I have done will help you as well. Most neuros or orthos do not know how to help people like us. One Wrong surgery can make your life hell. Our neck problem appears to have three components. Vertebra that are out of alignment, intervertebral discs that are prolapsed and pressing on the nerves and inflammation at the intervertebral joints. Muscle spasm coming from the faults in the neck and from Parkinson's itself further worsens the picture by compromising the blood flow. To improve the alignment I went for kkt spine treatment. For the prolapsed discs 3,4,5 and 6 I had ozone injections in the Paraspinal muscles. The ozone also significantly helped the inflammation. I had 4 ozone injection sessions and had about 28 injections into my neck. To control the spasm in the neck I found a drug named Colril very helpful. The whole regimen was not prescribed by any doctor but as a result of my own research. At this time I can say thanks to Allaah Almighty that I am 75% better. I now plan to go for intra discal ozone injections Insha Allaah to help stabilize the neck and clear the remaining symptoms. I sleep with the collar and have started doing neck exercises gradually.
Please understand that my situation was really BAAAAD. I do not know which part of the world you are in and whether the options are available to you or not. Good luck.
Wow! You've done so much to make things better for yourself. I wouldn't know where to start. You've clearly done your research. Well done and I'm glad you feel so much better for it.
I suppose before you began to try those treatments you must have been very sure about exactly what was going on with your neck. The neuros and rhumatalogists I've seen so far can't even agree about what's showing on my x-rays, mri's and scans. I have an appointment this week with a new rheumatologist and I'm hoping he'll be better than the ones I've seen until now.
I live in France near Nice after living in the center of France for 12 years. It's there where my problems started and where I began to ask for help but found very little. Down here we're hoping to find better medical care.
Which medical specialty would know anything about the types of injections you've had? Perhaps someone here might be familiar with the procedures and the products you used.
Can I ask how your PD was diagnosed? Datscan, typical motor symptoms, clinical diagnosis? Is or was there there any doubt about the diagnosis or is it 100% clear cut?
Do you have any family history of either PD or the type of arthritis you're suffering from?
Just wondering if there's any similarities in the origins of our problems. For me, there seems to be significant genetic probabilities for a fair chunk of them.
I was wondering if you have any dizziness or lightheadedness also. I keep falling because of this and my whole right side hurts. My neurologist says this is due to my Parkinson’s but no one in my family has it. My speech is really soft and I do slur and have trouble remembering what I want to say.
I do have bouts of dizziness and light headedness due mainly, I think, due to orthostatic hypotension (low blood pressure)
This has caused me to drop into a dead faint on several occasions. My speech is also grossly affected - quiet and incoherent much of the time and I often struggle to be understood. Very frustrating!!
Yes Cindyross, I have those symptoms too., although I still don't know if it's anything to do with PD or arthritis or something else. I have cervical arthritis (and arthritis in other places) which can also cause dizziness and light-headedness. Have you checked that out? Do you think you have arthritis in and around your neck and shoulders? Are they often stiff or painful? If by any chance they are, definitely check that out.
Blood pressure problems can cause those symptoms too of course. Are you OK there?
I think there's a danger that once you have a problem like PD, doctors can easily lump every other symptom you have into the same basket, even if it's caused by another entirely different problem. It's easier to do that than begin searching down another long road. I'm not saying it's the case with your doctor but we all know it happens all the time.
And yes, I slur my words at times. Usually when I've "crashed" mentally and physically. Which can happen a lot. Is it a tired brain? Is it a tired body? One would easily affect the other of course. For me again, is it PD, arthritis-related or something else?
Do you slur your words all the time or do you think it's related to when you're experiencing your "off" moments, when your PD meds have worn off? I suppose if you can't connect it to when you take your meds, it might be down to mental and physical fatigue.
Do you sleep well? Sleep deprivation can cause you to slur your words amongst many other serious symptoms that you and I both share. There's a huge amount of information online about sleep deprivation now. It can also cause memory problems and forgetfulness. It makes sense. If a persons brain isn't recovering properly during sleep it's not going to be functioning well once it's awake. I don't sleep well and I know there's underlying mental fatigue at some level when I can't think or talk properly. Does that sound like it might be the same for you?
Because I still, after so long, don't have a definite diagnosis I aren't taking any meds. So I know none of my symptoms are being caused by drug side effects of any sort.
Have a think about the above and check out other possible reasons for the dizziness. Ask your doctor to make certain nothing is wrong there. Especially if you often have pain in your neck or headaches.
And definitely look seriously at sleep deprivation. You may find something that could help you eliminate or reduce your mental fatigue and you could find yourself slurring your words less and thinking more clearly once you're less tired. It's just something you can tackle yourself in small steps, making sure you're getting better quality sleep, until you feel things may be getting better. I hope so.
Good luck and chin up! I hope I might have helped in some way.
Awe thanks so much for your input. And you’re right I don’t get much sleep six hours a night if I’m lucky And my speech gets worse by Dinner time because I’m so tired. I can put up with a lot of stuff but this lightheadedness is driving me bonkers I wish I could get rid of it I also get headache amd I live on Tylenol
When I lay down I’m fine if I stand up and walk around that’s when I get really lightheaded my Dr. thought it was my blood pressure also but I keep checking and I don’t think it is because I’m fine that way
If you are getting headaches often enough for you to need Tylenol for it perhaps they are cervical headaches which can be caused by neck problems. They will make you dizzy as you move around during the day. I can get really dizzy and mentally confused just moving my head a fraction even when I'm just sitting in a chair.
I think you definitely need to seek out a new doctor since your doctor doesn’t even answer your emails! Usually the first five years after diagnosis of PD, symptoms, most cases, are mild, gradually worsening, some say it’s a honeymoon. My husband had such back pain that his neurologist sent him to a Orthopedic doctor who performed an MRI. The MRI revealed that his back pain is caused by arthritis! He had a Facet treatment and at first it didn’t seem to help, but I have to say several months later, his back pain is much better! Please seek out a new more responsive doctor. Your doctor seems to be missing in action! Good luck to you, but you shouldn’t have to suffer!
On a similar note, see my post which is the reply before yours. Things are not always black or white but that's how many doctors think unfortunately. Glad your husband is getting some relief.
Welcome to this forum. You’ll get a lot of good advice and bad advice from people who have been there and done that. The important thing is you will find that everybody’s experience is unique. So there’s good news and bad news here for you. For what it’s worth, here’s my two cents worth:
Bad news first:
I’ve been lucky. I retired from the airlines 15 years ago at age 60 and have had plenty of time to learn a bit about PD and so called PD specialists.
You have been unlucky. You are going to have to learn a lot in a short period of time. I recommend a book written by a doctor at the mayo clinic. The New Parkinson’s disease treatment Book by Dr. Eric Ahlskog Will give you a good foundation of knowledge about this disease, though there is so much research going on now that new treatments may not be included.
2. Like good instructor pilots, good PD specialists learn much from their clients. Try to find one who seems receptive and treats you as a unique patient rather than another guinea pig for a pharmaceutical salesman.
3. Ultimately, you will probably have to be the expert on your PD condition. Making it more complicated, you may well have a separate problem at the same time that complicates diagnosis and treatment.
The good news:
1. All current treatments for PD treat only the symptoms rather than the disease itself. With all the research going on now, a cure may be found soon and that will change everything for those who can hang in there for a couple of more years.
2. My daily battle is finding a balance between dyskinesia and dystonia. If you don’t already know the symptoms of those two side effects, that’s just two of the conditions you may have that you need to be able to identify in order to adjust your medication amounts accordingly. Finding a neurologist who will give you medication guidelines and maximums, then let you experiment within those limits and adjust your daily regimen to find the most effective dosage for you, may help you, as it did me. Be sure you’re getting enough levodopa in your system each day and know the limits to how much your body can take without adverse effects.
In a nutshell, that’s what I’ve learned about PD as it affects me. I am not a doctor and I didn’t even stay in a Holiday Inn express last night, so this advice may be worth just what you paid for it.
Welcome to “The incredible shrinking Man “ club, as I think of it. (If you’re too young to recall that movie from the 50s, google it. )
You may be deficient in vitamin D. I have suffered through the same severe weakness and vitamin D in high doses helped a lot. The doctor prescribe between 400 to 5,000 units per day but people like us need around 25000. It is available over the counter and amazon.com. next thing, whatever happens, how weak you are, do not quit exercise and physical activity.
What do you mean by "levels checked" though? Blood levels don't tell us what is available at the cellular level, right. And who would have ever thought that some need such high doses of B1! This thread particularly interests me bc Paul's experience sounds very much like my husband's though his diagnosis (by a movement specialist) was not even 2 years ago.
Yes, I agree. I wasn't really looking for advice on possible treatments. I know there are many advocates on here for B1 Thiamine and other supplements ,but I was only trying to get some comment from people's own experiences as to whether affected speech and extreme weakness is really symptomatic of PD as have long suspected that my diagnosis may possibly be in doubt.
Looking at your symptoms and experience of PD I really feel that you have been really unlucky with maybe your Neurologist and support network and advice.
My husband had a Neuro five years ago who we never really had a rapport with, he was like a Scientist unwilling to impart with us his knowledge about PD didn’t really answer questions told us it was progressive and gave my husband Modopar to see if it helped. It helped a bit and stayed on the same dose for 4 years - altered it a bit but basically stayed within 4 doses 25/100 per day.
As I felt there must be more I could do to support him I started researching daily about PD - note my husband didn’t, as it scared to think how he would end up. I
I took a different approach, introduced much healthy eating, nothing extreme. Researched vitamins, supplements, therapies from this website and many others. Last year went to European Parkinsons in Italy for intensive exercise treatment which was amazing plus learning more about nutrition.
Changed our Neuro found a much more positive and helpful person. He said carry on with supplements, added in Rasigiline. These gave my husband more dyskinesia so after an email exchange he prescribed Amantadine. They have been amazing.
Still has PD five years plus now - symptoms going back to ten years ago. Walks every day 2- 3 miles, due to lock down, no gym as we can’t.
Recent 40 minute phone appointment he suggested cutting down Modopar as maybe too much dopamine causing restless legs and foot dystonia so he’s done that and it really helps, he seems to allow my husband to manage meds with help.
Complains of weakness too, has lost weight but managing ok.
I agree with comments already offered that you need support with meds and you need to see what helps and what doesn’t, as much as you can.
Hi PWal: I empathize. I too was diagnosed with MSA at first, before being downgraded to PD. I was almost 52 when diagnosed, the perfect age for MSA. I drool a lot overnight, my balance is worse than most fellow Parkies who were diagnosed a lot earlier than me, and I virtually lost my handwriting and typing despite taking Sinemet for two years. The slight benefits from medication make me wonder as well whether I am actually MSA, but my neurologist says I am responding well to Sinemet, which is more typical of PD than MSA. One of the nasty things of PD is that it fools your muscles into thinking they are weaker than they are. I know in the last six months I have been able to get physically stronger because of the PD Warrior and regular exercises I was doing; but I was still surprised when my physiotherapist told me that my right leg, which is worse affected, is actually stronger than my left leg. Your problems are frustrating, but don't give up hope that it is actually PD instead of MSA; I found it is simpler not to worry about it.
I have most of those symptoms too. Diag 10 years ago. Kitten business, yes on and off every day. But I sometimes have to resist it as I have a young family. My main issue is anxiety, I find that more crippling than anything. The neuros i see have sorted out some of my issues, most especially was insomnia.
When I get weak in my legs, the more cardio- stationary bike , long fast walks, and weight training, seems to actually give me more strength and balance. I don't know if you can do this but exercise really does help. I also take a concoction of health products- including fish and MCT oil, and Curcumin (for inflammation) Cheers
Although I don't have resting tremors, I do have all of your other symptoms, including extreme weakness worsened by any type of exercise. I was diagnosed in Aug 2017 at age 55 but symptoms started abruptly in fall of 2016. My husband and I used to walk daily, hike a whole lot (French and Swiss Alps, Canadian Rockies, Alsace’ Vosges, etc) and one day, I woke up and could not do my 30 min treadmill walk: arm swing had vanished and had leg drag.
I had no benefits from Sinemet prior to about 600mg daily, but got a whole lot of side effects starting at 300 mg daily... And the benefits I had didn't last for very long. For example, at 200mg 3x a day, I would have to wait an hour before it kicked in, got at best a 2 hr window in which I walked normally, and then decline would settle until next dose. But even this little window worked for about 2 months and then stopped working. I needed 700mg and then, needed more. Side effects were so intense that they were worse than the disease: total loss of appetite (weight loss), insomnia (3:30 hrs sleep nights), intense physical relentlessness, painful rib dystonia, end of dose toe curling and face cramping and worsening of already bad constipation.
I tried pramipexole, amantadine, azilect, entacapone with not much results but lots of side effects.
I am also wondering if I have MSA, but I think it most probably is a PD subtype: Akinetic Rigid:
Parkinson Subtypes Progress Differently in Clinical Course and Imaging Pattern
At baseline assessment, UPDRS-III motor score did not reveal significant differences both in the OFF- and ON-state between the subtypes (see Table S1). In contrast, the follow-up evaluation showed a remarkably faster clinical progression in the akinetic-rigid compared to tremordominant patients indicating that akinetic-rigid ones were clinically more affected.
Conclusion
This study shows for the first time a considerable clinical and in-vivo progression of akinetic-rigid patients over time, whereas tremor dominant patients have a relatively stable course. These data may cast new light on the two different entities of one disease.
Like you, I was told by my neuro that DBS is not for those who don't respond well to levodopa, leaving me just about hopeless. And then I read about FUS Focused Ultrasound Surgery on here. I have a Sept appointment in Switzerland to evaluate if I am a candidate for the surgery or not. I am sorry to say that this is all I found that may help me. You can search on here ''FUS''.
Have you asked your neurologist's opinion on the extreme weakness? I asked mine and she says it’s not weakness but rather stiffness... and as far as being worsened by exercise, it's just not possible in her view!
No I haven’t had an opportunity to discuss it with him yet as my meeting with him in March was cancelled. I know what you mean about exercise. I too feel weak after it. Maybe it’s simply fatigue ?
I don't know what it is but it definitely limits all aspects of every day life. What bothers me the most is that rigorous exercise is said to slow pd progression but the more I try to exercise, the less I can actually do...
"A definite initial response to levodopa treatment was seen in 15/18 patients with MSA-P, but in none of the six patients with MSA-C.
Age at onset is about 1 decade earlier in MSA-P compared with PD,1 furthermore the motor disability at presentation is clearly more advanced in MSA-P and it progresses more rapidly than in PD. "
I had the same symptoms 3 years ago for one year till I started HDT. I saw 5 motion disorder doctors and all gave me Sinemet which did nothing for the non-motor symptoms (drooling, urinary urgency, constipation, insomnia, anxiety, depression, bad balance, foggy mind, weakness, lack of energy etc.). All of these non motor disappeared after started B1 two years ago. I saw the first improvements after 4 weeks. None of those doctors took B1 seriously. Initially I did not believe in it, either.
I have 160 lbs and started at 2g /day - 8am and 2pm but after one year I cut down to 1g / day - at 2pm. Very few people had some issues with the blood pressure so just monitor it. Other than that it seems to be safe and a lot of people here use it.
The single symptom left is the RH tremor which Sinemet only partially helps but for non-motor symptoms did nothing. In order to verify if the HDT helps I stopped it for 3 months and I felt the non-motor symptoms gradually coming back.
HDT helped mostly getting my physical and brain power back.
You do whatever you want but I just gave you some info regarding my experience! In my case the doctors did not help too much. Actually I stopped dealing with the neurologists and have my family doctor prescribe Sinemet for me (3 X 100/25 a day).
Hi! I think I explained in my previous post about the dosage vs weight. I'm taking Solgar 500mg pills from AMazon but some people use a different brand. I chew them (not very bad taste) with a small square of dark chocolate (80%) plus water.
Apparently our muscules need a lot more oxygen than people who don’t had PD. Hence we feel weak more quickly. PD meds help this a lot.
Re the neck I’ve just started taking Celebrex and it’s incredible how much better I feel. Neck and hips not sore at night so can actually sleep. Wish I’d taken it sooner.
If you can’t see your neurologist maybe a GP will prescribe some meds.
i have extreme weaknesss in my pd arm for sure and i have speech difficulty and swallowing difficulty i have an eating protocol. cheers!
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